Patrick's News Blog

Summer Holidays

2010-11-17T07:07:00.000-08:00

I know, I know. I'm getting really bad at updating Paddy's blog! We had a fab summer with family and friends though, hopefully the piccies say it all xxx

Loving Life

2010-07-16T09:12:00.001-07:00

WoW what a mad mad start to the Summer! We had a fab time in Gran Canaria, got stuck out there amidst the volcano crisis but Thomas Cook were excellent and looked after us really well. Patrick travelled really well, he was a bit more sleepy than usual during the days as it was so hot out there but he came alive in the evenings and we all had a really nice, relaxed family break.We've been back for a while now and Patrick's been going to playgroup twice a week which he loves! He gets really excited on school days and always comes out smiling and laughing. He's only been there for a term and has his last day there on Monday but he starts big school nursery in September which will be brilliant for him. He's got a place at our first choice of schools, Linwood School which I'm sure he'll do really well at.
It's hard to believe we've reached this point, there have deffinately been times over the past fews years where I wondered if he'd ever make it but I'm so happy to say that he's doing so well, so happy and healthy it really is amazing how far he's come. His epilepsy is well controlled again after a slight downward turn as we weaned one of his meds off. We've since put him back on the drug and he's not really having any seizures. Physically he's grown again (he really is a big boy) and his head control and trunk are getting stronger all the time.
We're at the start of the summer holidays now and have many fun packed days planned. We're starting with a trip to Naomi House though for some quality time and then we're off to London for a few days to visit friends and relatives and at the end of August we're off down to Devon for a week in a big country pad with 23 of our relatives, so loads of magical memories to be made in the weeks ahead!

One thing we're also doing in August is a sponsored walk to raise some money to buy Patrick a special comfy seat and an 'all-terrain' buggy. We are determined that Patrick will get to experience as much of life as possible and feel that he would really benefit from these items, especially the buggy as we'll be able to take him into the forest and down to the beach which will be fun for him and Isaac. The walk will be held on the 14th August and will be 5 miles long from Hengistbury Head to Bournemouth Peir. We are looking for volunteers who wouldn't mind walking with us and getting friends and family to sponsor them. If you would be interested please let me know asap and I will send you a sponsor form. If you can't do the walk but would like to sponsor me and Isaac then you can do so easily by using Paypal, we have a special donation page that you can use to donate.

Pennies for Patrick

Thanks to all those who are already signed up for the walk, we're looking forward to it.

2010-03-11T07:36:00.000-08:00

Well, it's been a good start to 2010 so far. Patrick had been having a few seizures over xmas and new year but after a consultation with his neurologist and a tweak of his meds he's doing better.
We're in the process of starting his statement at the moment, should have been sorted last year but there weren't any educational psychologists to do the assessments! As part of the process we've been getting reports from all the professionals that work with Patrick and surprisingly it's been quite positive. There is lots of focus on what he can't do, obviously they have to concentrate on these to make sure he gets the best support at school but there has also been a lot of really positive comments made about what a happy little boy he is and how much he has progressed over the past year, much more than is expected of him really. We've seen a big improvement in his awareness, he can associate object with activities now e.g if I show him his headphones he gets excited as he loves his music. When I get back from dropping Isaac at school he hears me set the car alarm (it beeps) and looks to the door for me coming in. Both these skills are really important and is a good sign for his future communication.
It's been interesting getting these reports as for the first time we have it in writing what Patrick's diagnosis is. It's a mixture of a few things and isn't straight forward but will make it easier to introduce him to people.
1) Epileptic Encephalopathy - loss of skills in all domains of functioning including cognitive, behavioural, communication and motor that occurs with epilepsy and appears to be caused by epilepsy.
2) Cerebral Palsy - a group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to non progressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of cerebral palsy are often accompanied by disturbances of sensation, perception, cognition, communication, and behaviour, by epilepsy, and by secondary musculoskeletal problems.
3) Cerebral Atrophy - a common feature of many of the diseases that affect the brain. Atrophy of any tissue means loss of cells. In brain tissue, atrophy describes a loss of neurons and the connections between them. Atrophy can be generalized, which means that all of the brain has shrunk; or it can be focal, affecting only a limited area of the brain and resulting in a decrease of the functions that area of the brain controls.
4) Epilepsy

It's good to have these 'labels' for him but none of these can tell us how or why his seizures were triggered in the first place. Epileptic Encephalopathy is usually linked to certain syndromes which thankfully Patrick doesn't have so we're none the wiser really which suits us fine.
Patrick had his 3rd birthday a few weeks ago, I can't believe how fast the time has gone! He had a great weekend with lots of family and friends. I made him a special sensory tent by converting a pop-up play tent which he loves and he got lots of money towards play equipment.

I'd just like to mention the Variety club charity who recently funded Patrick's new super-duper supportive car seat, make sure you all buy one of their gold heart pin badges!
We're off to Gran Canaria for the Easter holidays which will be our first time abroad with Patrick, lots of organising and panicking to be done over the next 3 weeks but I can't wait to get a bit of sun!
I'll hopefully have loads of good photo's to upload after that so look out for the next post!

HO HO HO Merry Christmas!!

2009-12-18T09:05:00.000-08:00

Just wanted to wish everyone a very Merry Christmas and a fab new year, hope 2010 is a good one!! Patrick has gone 21 weeks without any seizures now which is amazing, he's loving the xmas season with all the lights and tinsel, it's a sensory overload! We're all really looking forward to a hectic week ahead with Isaac's 7th birthday on 22nd and then everyone at ours for Christmas day then up to London for boxing day with family there. We have managed to book a few days at Naomi House in between xmas and new year just to relax and recover which will be well needed by then.

I hope you like my little snowmen, they dressed up for the Julia's House Christmas party last weekend, I don't think Patrick was too impressed!

Lots of love to everyone and thanks for all your support in 2009 xxxx

2009-11-15T02:49:00.000-08:00

Found this beautiful song by Mark Schultz, just click on the title and it will take you to the you tube video.

He's My Son

A NOTE TO NEW FOLLOWERS

2009-11-15T02:44:00.001-08:00

I know that other Mums and Dads out there have come accross Patrick's blog as they desperately search for answers and hope for their own children (you know who you are). I know it is really important to find other people who understand that you can talk to, please feel free to e-mail me directly at gemconyard@yahoo.co.uk or check out Patrick's Facebook group Patrick's Progress

2009-11-13T14:05:00.000-08:00

Wow, didn't realise it had been so long since my last post! Really sorry for the long gap in between news, I know there are some followers of the blog that look forward to seeing how well Patrick is doing and at the moment he is doing very well.

A lot has happened over the past few months so I'll try and fit it all in, Patrick has been seizure free for 16 weeks now, his best run yet. He still has the odd 'jerk' and little spaced out episodes but very few and far between and always very brief. He has settled into a good routine and is sleeping much better, from 9pm - 6am with usually a 2hr nap before lunch then he's wide awake, alert and playful for the rest of the day. He is getting much stronger and his head control has really improved over the last few months, he only loses it when he is tired. He is much more interested in his toys these days. I made a few adaptions to his buggy out of frustration that he couldn't reach his toys without help and I couldn't get a play arch to fit it, I managed to rig a couple of hooks to the sides so I could hang some toys in his line of sight and close enough so he could reach them and it seemed to work wonders. When we're out and about now I hang his favourite tambourine for him and he bashes away all around the shops, much to the annoyance of everyone else but I love it!
I've been keeping really busy and have been getting creative with my new toy, my sewing machine. I was getting so frustrated at the cost of special needs clothing, bibs etc that I've now started a dressmaking course and have set up a website selling bandanna style bibs and hope to be making and selling vests and sleepsuits in bigger children's sizes once I've finished the course. www.littlegreenfrog.net is the web address and all proceeds from the sales go towards stuff for Patrick.
With my new found creativity I've gone a bit gadget crazy, since I've made Patrick some support cushions for his buggy that help bring his arms forward and another one for his positional chair, it makes me mad that his equipment costs at least £2000 but still none of his seats etc have been right for him and he would always sit with bent arms, hands in the air, unless I put his splints on. Now with his new support cushions his physio has already noticed an improvement in his arms, they aren't as tight as they used to be which is great. I've also made him a special support for his bed as one of the problems we have is that he wriggles around in his bed and slips under the covers, as he can't then pull himself out it's always a worry for us that he'll suffocate so I spend all night adjusting him and pulling him back up the bed. With his new support he stays where he's put all night which helps him and me sleep better.

We've finally managed to get the educational psyhcologist round to get the ball rolling on his statement process which couldn't come sooner. We went to visit Linwood School recently and were really impressed. I think it's likely that the council will offer him a place at Linwood and we're more than happy with that. We got on really well with the teacher there and she even invited me along to a teacher training day about switches and switch adapted toys as I'd been speaking to Patrick's OT about them. With the money made from bibs sales and some very generous donations from Patrick's Grandparents we've managed to buy Patrick a selection of switches and switch devices which we hope will start him on the road to communication. The link I've added is to a you tube clip of another little boy playing with a switch similar to Patrick's, just to show you what a switch is, I will try and get some good video footage of Patrick soon.We've just returned from our holiday at Centre Parcs which was brilliant. Patrick was on top form all week and as you can see from the photo's, he had a really great time. As ever we made sure Patrick was included in everything we did. We took him swimming, the pools are really warm there and the disabled facilities are great which makes life a lot easier. We went ten-pin bowling and with Isaac's help Patrick knocked them all down! He joined us for a round of mini golf and even helped me with on the driving game in the arcade!
We have a mad schedule over the coming weeks, it's always hectic this time of year but even more so as I'm going into hospital for a few days to have my wisdom teeth out (would usually be done in a day but I have a blood dissorder so need extra treatment). I'm really not looking forward to it as I hate the idea that I'm going to be away from my babies and out of action for a few days, I'm sure they'll all cope without me, not sure I'll cope well without them though :-(

Latest scan results.

2009-07-21T01:14:00.000-07:00

Hiya, we had the results of Patrick's latest MRI scan today and have some great news to share.

Since his last scan in March 2008 Patrick's brain has continued to develop and grow and the myeline (white matter) is developing too. This news confirms that he doesn't have a degenerative dissorder, which of course is great news. There are still questions surrounding the area of the brain that controls his functional movement, this area still isn't developing normally but we had anticipated that really as we know he's not made much progress physically in the last year. It would seem that there is damage to the white matter in that area and so his brain isn't able to send clear enough signals to control his movements. As this area is tiny and his brain is still very small it is difficult to get a clear enough picture to see the extent of the damage, we may get a clearer picture in the future.
This scan has also shown that the damage to his brain is consistent with massive trauma, or "'a catastrophic explosion" as his neuro put it! This sounds alarming but is the same as would be seen in a child with cerebral palsy who had been starved of oxygen at some point. This puts further weight on our theory that his episode in 'Status' is what has caused the long term damage rather than any kind of genetic or metabolic dissorder.

So, basically we can relax and be sure that Patrick's condition isn't going to get any worse over time, all the signs are there that he will keep making progress, he may not ever be very physically able but hopefully his communication skills etc will develop and improve with time and hard work.

His main problem now is his epilepsy and keeping that under control. He is still taking 4 strong anti-epileptic drugs but he is relatively seizure free, his last seizure was 4 weeks ago and that was a mild one. We will be weaning him off one of his drugs over the next 6 weeks (his Vigabatrin) as it isn't good for him to be on so many, hopefully with no nasty consiquences.

I hope I've explained all that in a way that makes sence, I'm a bit emotionally shattered today so may be talking gobbledygook!

2009-06-13T07:44:00.000-07:00

Hiya, the last month has been a bit up and down. Patrick is still stable but he has had a few more mild seizures. He's also had trouble with what seems to be leg spasms/cramp. About a month ago he was having quite frequent episodes of this, he would suddenly start really crying in pain and he would draw up his right leg which would be tense and shaky. This lasted for around 10-15 mins with him really distraught and then he'd relax and calm down. We struggled to find a cause or a trigger for the episodes as it came on so suddenly, we were worried he was having some kind of seizure as we've seen seizures before that looked like stomach cramp. Anyway, he was wearing his orthotic boots a lot and I wondered if they might be a little tight so stopped him wearing them, since then he's not really had the cramp so I'm hoping that was all it was. We have spoken to his neurologist who said it could well be seizure related, he wouldn't be surprised given Patrick's history but without hard evidence and catching an episode on EEG it's impossible to say for sure. We'll just have to keep an eye on it and if it starts happening again look more into it. He doesn't need to wear the boots anymore anyway as they weren't doing enough for him, instead he's having some special foot splints made to keep his feet in a better position and hopefully stop his toes curling under.
Patrick has been given a back brace and new arm braces now to help with his posture and help prevent his elbows seizing up, he's taken to them quite well bless him, with his leg splints and foot splints he's got no chance of escaping!
He was due to have his annual MRI scan last week but unfortunately he caught a virus, just a cold really but it hit him hard and he's not been able to eat properly for a week without throwing up and he's got no energy so I had to cancel his scan and wait until they send out a new appointment. He was also due to see his paediatrician as well but it's all had to go on hold until he's well again.

May was quite an eventful month, lots of family stuff going on, in particular my sister Sharon's wedding. As it was local it was a bit less stressful than other occasions, the weather was fab and the hotel really looked after Patrick's needs well. My sister had arranged with the chef for them to give Patrick the same meal as everyone else but for them to puree it for him, well, the chef really went to town and produced an amazing plate of pureed lamb presented on a dinner plate in a pretty pattern with garnish etc.. I've never seen anything like it! It kinda put my pureed slop in a bowl to shame! It was a fantastic day, a sensory feast for Patrick with bubble machines everywhere and he loved the disco, all the noise and lights and his Grandma whizzing him round the dance floor in his chair, he's definitely a bit of a party animal, when he's awake that is!

We're still trying to find the right balance of drugs to keep him awake, we have dropped his carbemazapine down a bit but can't really tell if that's done the trick because he's been so poorly. We're seeing his neurologist next month so will discuss it further then.

We had some good news regarding Patrick's standing frame. At last the NHS had a change of heart and decided they could fund it for him, as far as I know the order has been placed and he should receive it soon.

That's about it for now, thankfully things have been pretty uneventful, or maybe we're just a lot more chilled out these days. I do feel we are a lot more relaxed around Patrick now and we try to just take everything in our stride. Things are that much better that I've made the decision to go back to work at last. I worked a few nights a week as a youth worker before I had Patrick but never went back after my maternity leave. They left the door open for me if I ever wanted to return and I think the time is right now. I'm only going back one evening a week and on a volunteer basis to start with to see how it goes. I'm really looking forward to it though as it will give me a bit of time away from Patrick so I can be 'Me' again. I'll be working at Somerford Youth Centre, just waiting for my criminal records check then I can start. I'm also looking at joining a choir. For anyone who doesn't know me from before Patrick I used to sing lead vocals in various bournemouth based bands but again, haven't felt able to since having Patrick. Anyway, I found a local choir called 'The Funky Choir co.' who do all contemporary stuff that I like so I'll be able to sing which I love and is a massive stress reliever but without the pressure of being out front.

So that's about it for now, I'll update again when we have some more news following his hospital appointments.

Lots of Love
Gemma xx

2009-04-24T08:25:00.000-07:00

Hiya, I realised it's been a while since I updated the blog so thought I'd better get my finger out!

It's been 13 weeks now since Patrick's seizures stopped. He did have one a few weeks ago on Good Friday though, he'd just gone to sleep but woke up suddenly and went a bit spaced out. His right leg was jerking rhythmically and with every jerk he grinned. It was all very mild but went on for a good few minutes. It was very upsetting at the time as he'd gone for so long without having any and it caught us off guard a bit. Thankfully he hasn't had any more since then and continues to be more alert which is great.

At a recent physio assessment his therapist wasn't too happy with his progress. It seems his arms and legs have got tighter over time in spite of me doing his exercises regularly. He will be getting new arm splints fitted to try and loosen his arm muscles and stop him keeping them bent at the elbows. They are also getting him a corset like back brace. He tends to lean over to the right a lot and can't sit up straight unaided so they hope that the brace will help correct his posture a bit and help support him when sitting. When he sits up straight his head control is a lot better so having the back brace will help with that too. Bless him, he already has braces for his legs, he's gonna end up looking like the tin man at this rate!

He's getting on really well with his glasses, they don't bother him at all really. He can't take them off as they're hooked right over his ears but somehow he manages to knock them off his nose and into his mouth and he chews them!

The change in Patrick's medication regime has made little difference really. For the first few days it seemed it was working as he was awake nearly all day and slept all night but after about a week he was back to sleeping all morning, right through lunch until 3pm on some days. Now he seems to have a few good days where he's awake all day followed by a few really sleepy days. I'm going to speak to his neurologist soon and see if we can reduce at least one of the meds a bit to see if that helps.

We had a great Easter holidays, thanks to the weather the boys were able to get out on the trampoline a lot (Patrick loves it) and we caught up with lots of family and friends.
We're off to Naomi House on Sunday for a few days, our first break since January so we're really looking forward to that.

That's about it for now, not a lot to report I'm afraid but I suppose that's good news really. We're just plodding along nicely all healthy and happy, long may it continue!

I did it!!!

2009-04-01T05:31:00.000-07:00

Hiya,

Thank you so much to all those who sponsored me to abseil off the tower, as you can see from the big grin on my face I loved it! I raised nearly £250 for Julia's House and Help a local child and had a fab day xxx

How cute is that?!!

2009-03-28T01:28:00.000-07:00

Hiya, as you can see from the picture Patrick has his new Mr Bump glasses, he's coping really well with them surprisingly and doesn't seem to bothered by them. He tends to knock them off as he's rolling around on the floor but that's all.

We had a busy week of appointments last week, first one was with Prof Kennedy, Patrick's Neurologist at Southampton. The appointment went well, his EEG results show some improvement due to maturation which is good news although there is still abnormal activity as well. As Patrick is so stable at the moment and isn't having seizures we're not going to change any of his meds, we've adjusted the regime slightly as he has been over sedated, by splitting his meds up across the day and giving him 3 doses instead of 2 it has made him less sleepy during the day and he's sleeping longer at night which is fab.

We went to Oxford to see the Dr regarding the Keto diet, she was really nice and after taking all Patrick's details agreed that would be an ideal candidate for the diet but is not going to put him on it now while he's not fitting. At least it's given us a good back up plan should his seizures return we know we can contact them at Oxford and they'll start the diet straight away. It's a lot less hassle than we had thought as well, we wouldn't need to go and stay in Oxford and there would be no need to starve Patrick for 2 days either, it's all done via e-mail these days!

We also had Patrick's swallow x-ray last Friday, by mixing in some special powder with his food and drink we were able to feed him and watch on the monitor to see exactly what he's doing with it. We were particularly concerned that he wasn't swallowing his fluids properly and thought they may have been going into his lungs. Thankfully though this wasn't the case and he managed to swallow every mouthful! His mouth action is a little disorganised, his co-ordination is all over the place but that doesn't matter, he's getting his fluids and food in properly so no need to fit him with tubes, great!! They were actually very impressed with his feeding, he usually has pureed food as he tends to gag and choke a bit with lumpy stuff, they tried him with a chocolate mousse with rusk mixed in and although he didn't eat it properly, he filtered all the lumps out and just swallowed the mousse, cheeky but clever!

It was a bit chaotic last week having 3 big appointments in 3 different hospitals but thankfully this week has been really quiet and we've been able to concentrate on Isaac a bit. He had his schools Easter bonnet parade this week so there were fluffy chicks and painted eggs everywhere!

The big abseil is tomorrow!! To all those who have sponsored me already, thank you so much. I know money is tight for everyone at the moment so every penny really means a lot. I'm starting to get really nervous now, I didn't think I would but I've been talking to a few other people who are doing it and they're terrified, I think it's rubbing off on me a bit! It doesn't help that the forecast isn't great, it's gonna be windy apparently, not good when you're suspended by a rope 120ft above ground! Anyway, I'm looking forward to meeting Kyron Bracken, Patrick and I will be having our photo's taken with him for the local press!

Anyway, that's the latest, I'll add some photo's of the abseil after the weekend xxx.

8 weeks and counting!

2009-03-14T14:04:00.000-07:00

Hiya,

Just a quick one to update on a few things. Firstly, Patrick is now 8 weeks seizure free! He has the odd vacant episode and the odd twitch but that may be the drugs. We're seeing his new Neuro on Monday to get his EEG results and discuss his medication, Patrick is overly sedated at the moment, the combination of drugs really knocks him out, he often sleeps all morning until 1-2pm so we're really keen to get that sorted as it has a negative effect on his development.

I saw his speech and language therapist a couple of weeks ago, she watched him drinking from various different cups and with his syringe and she's concerned that he may be having problems swallowing. This could answer a lot of questions about why he keeps getting chest infections, if he's not swallowing properly any liquid can go straight into his lungs causing him problems. Anyway, he's booked in for a videofluoroscopy next Friday which is a special xray that will show exactly what happens when he drinks and eats. If it proves that he's not swallowing properly he may end up having a 'button' fitted which is basically a tube that goes straight into his tummy. This would be a last resort and we're hoping it wont come to that as I can't help thinking it would be a step back but if needs must... In the meantime we've been advised to give him thickened liquids in a special cup that makes it easier and less messy for him.

I took Patrick for an eye test at Southampton hospital last Thursday, because he's on Vigabatrin which can cause sight problems he has to be regularly tested. It turns out he has a slight squint and is slightly longsighted in his right eye. Bless him, as if he isn't cute enough already he now has to wear glasses! Hopefully as his sight is still developing, wearing glasses now will correct his vision and he may not have to wear them long term, we'll have to see how he gets on. I'm not sure how well he's gonna cope with glasses, he's likely to have problems keeping them on and I don't think he's going to like them but we'll give them a go. He has a spot of eczema behind his left ear so that might flare up with the glasses rubbing, as if he doesn't have enough to deal with! Anyway, he'll get his cute little Mr Bump glasses in about a week so I'll post a photo when he's got them.

We have a busy week next week, Neuro on Monday, Oxford on Wednesday, videofluoroscopy Friday so I'll have lots to update after all that.

On another note, on 29th March I'm going to be abseiling down the Water Tower in Poole raising money for Julia's House, the hospice Patrick goes to for pre-school sessions and toddler group. It's a fantastic charity that really does a lot for all of us so if you could please take a look at my Justgiving site and sponsor me I would be really grateful. If I don't reach my £100 target I can't do the abseil and I'm really looking forward to the challenge. PLEASE SPONSOR ME HERE.

Thanks for all your continued support and interest in our precious little boy.

Our baby's no baby any more!

2009-02-24T03:19:00.000-08:00

Hiya, our big boy turned 2 last Thursday! Massive thanks to all those who sent cards and pressies for him, he had a great day. We had a quiet morning while he played with his new toys and his Grandma & Grandad came round for lunch and a bit of birthday cake, then in the afternoon we took Patrick, Isaac and a couple of friends to a local clay studio where the kids painted their own ornaments and Patrick was able to do a bit of foot printing which he loves (he has very ticklish feet!).

Patrick has nearly gone for 6 weeks without any seizures now so that is great news. He is doing fantasticaly well, becoming more and more vocal and is now able to make a few more sounds. He's nearly mastered the 'M' sound so I have a little hope that he may say 'Mummy' one day.
We've been busy busy as usual, went to see another school yesterday that Patrick could go to, Victoria Education Centre. We didn't think we would find a better school than Langside that we went to see back in December but we're pleasantly surprised. This school is much bigger with more children with more varied levels of disability. We really liked the friendly, buzzy atmosphere and think that Patrick would fit in well there. We have a couple more schools to see and must get the statement process in place but that all takes time. We know we have to get it started now though as we want him to start in September.

This afternoon I have an appointment with Patrick's speech and language therapist to look as his drinking, hopefully she can help make it easier. Patrick's physio, OT and portage worker have all seen him since he stopped fitting and they have all noticed a big difference in his alertness and concentration. He's more interested in his toys now and is trying much harder to explore them. He's just started rolling over to the right as well which is progress, he can't quite make it right the way over yet but is trying. Unfortunately as he is still on all the medication he is still a very sleepy bunny, he usually goes straight back to sleep after breakfast and can be out for the count until 1pm! We have appointments with his neurologist and his assesment for the keto diet next month so I hope that we can eventually start weening him off some of his drugs.

We managed to get an EEG done a few weeks ago so hopefuly that will show if there is an improvement there but we wont get the results until we see Prof. Kennedy in a few weeks time.

For those of you who are on Facebook, Patrick has a new news group! Patrick's progress. Facebook is great as I can upload loads more photo's and video footage and I can send e-mail updates to all group members making it easier to keep you all updated and also it makes it easier for you leave us messages. So for anyone who's not on facebook already, sign up! I will still be updating the blog so you wont be left out so don't worry.

That's about it for now, I'll update in a few weeks when we've seen the neuro's.

Take care, Gemma xxx

A Change For The Better?

2009-01-23T02:44:00.000-08:00

Hiya,

I've been putting off writing this blog entry for fear of jinxing things but as this blog is supposed to be an honest account of Patrick's progress hear goes...

Patrick has not had a seizure for 8 days.

There I said it and am currently running round the house touching all the wooden furniture (damn this laminate cheap stuff!). This is a really significant change for Patrick as up until 8 days ago he was still having at least 6 seizures a day, they had changed slightly recently and we thought they were getting a little worse so to have them suddenly stop completely is very strange. There has been no change in any of his medication since the beginning of November so we are stumped as to why they should suddenly stop.
We have also seen a significant improvement in Patrick's concentration and his awareness of his surroundings, he has started to show an interest in his toys, whereas before he would simply ignore them and look away. He had a Portage session yesterday and he worked so hard, copied us banging his drum and laughed at the toys and the silly faces we made. Up until now it has been quite hard to get a smile out of him without being hands on with tickling him but now he will watch his brother Isaac running around being a loon and thinks it's really funny, a real joy for all of us especially Isaac as he tries so hard to make Patrick happy and loves this new positive response.

So it would seem for now that Patrick has turned a corner and you would think that we would be overjoyed, we are of course amazed and thrilled at the sudden progress he is making but with any change comes a new fear, the fear of the unknown. All the while he was having lots of seizures a day we knew what we were dealing with, knew the signs to look for and when he was most likely to fit and we were very laid back about it all. Now there are no seizures we don't know what to think. It is possible that Patrick can outgrow his epilepsy although we have always been told that it is highly unlikely as his epilepsy is so severe, it is also possible that Patrick's epilepsy has just changed. We may now see less seizures but when they happen they may be a lot worse than he is used to which poses more risk. So as you can see, although for now it is good news that he hasn't had any seizures, until we can establish why this is, we are extremely nervous and worried about what happens next.

We have been waiting for an EEG scan since November and I have tried chasing this up, that should hopefully tell us a bit more but I guess we have to just wait and see where things go from here. Keep everything crossed and I will update if there is any change or information.

I am now off the wheelchair clinic to get a bigger buggy for him, he's outgrown his one already in only 6 months!

Lots of Love, Gemma xx

Happy New Year!!

2009-01-13T08:23:00.000-08:00

It's been a hectic start to 2009, a sign of things to come I reckon. Patrick has had quite a few appointments already, we saw a rep from Jenx last week who bought out a couple of bigger standing frames for him to try, he's so tall he needs a frame that's made for age 3-8yr old's, he's not even 2! They've also loaned us a special sleep system for a couple of weeks to see how he gets on with it, it should help prevent problems like curvature of the spine so is quite important. Both these bits of equipment are great but the NHS say they wont pay for them so they are approaching charities on Patrick's behalf to get the funding for them, the mattress alone on the sleep system costs £2000! We've had another visit from Patrick's Occupational Therapist who has closed his case for now as he has all the equipment he needs! I never thought I'd be saying that this time last year!
Patrick's health is really good at the moment, since he's had his new bed that has an adjustable base he hasn't had any chest infections only a mild cold that he recovered from quickly. We keep his bed tilted up a bit so his chest can drain nicely and it seems to make a big difference. He's also sleeping so much better, often going right through the night. We still have the occasional dawn chorus at 4am but in general there's an improvement.
Since Christmas we've seen a big improvement in Patrick's eating as well, I'm not having to puree all his food at the moment, before if there was the slightest lump in his food he wouldn't know what to do with it and would gag and often vomit. As long as his food is soft enough he is managing to munch lumps and is doing really well. He still has problems drinking but we're seeing his speech and language therapist next week and are hoping she may be able to suggest a special cup we can get for him. You can get thickening agents on prescription that thicken any juice or liquid making it easier for children like Patrick to drink but the ones I've seen are full of carbohydrates so may not be any good when he goes on the keto diet (still waiting for an appointment for that).
Patrick's seizures are also very stable at the moment, we've just spent the weekend at Naomi House and from the Friday to Sunday they only recorded one seizure! I was a bit unconvinced that he hadn't had any over night and thought that they had probably gone unnoticed as he's in a room on his own but for the past two nights we've been home and he's had none through the night so that is brilliant. He has had a couple today though but has a couple of big teeth coming through so I think that is making them worse. I am encouraged though by the noticeable improvement, especially as there has been no change to his medication in over a month.
He's been really alert over the last few days and is really responsive which is great, I am hopeful that this year will be a good year for Patrick.

We had an appointment with a Geneticist today at Poole hospital. It went OK really, we had to go over all the details of Patrick's condition and what he's been through and he drew our family tree and asked us questions about our family history. He said that as there are mainly boys in our family they can discount a lot of conditions already. He had a good look at Patrick and was generally pleased with him, he looks like a 'normal' child, no obvious signs of there being something wrong. He thinks Patrick will be a difficult case to solve as he has nothing to go on other than his epilepsy really but they have some blood samples at the lab and he took some photo's of Patrick to take back to his team who will be investigating. At this stage he told us that it is possible that he has a genetic disorder and so there is a 25% or 1 in 4 chance that if we had another child they would have the same condition. I got the feeling he was covering himself until he can tell us more. It is also possible however that he has a new mutation of a genetic disorder and if this is proven then the chances of it happening again are zero. All these investigations will take a long time though so we wont get any answers for a while.

Anyway, that's about it for now, we have a busy couple of weeks ahead, lots of celebrating to do with weddings, birthdays etc and various medical appointments in between. I'll update in a couple of weeks, hopefully with news about the Keto diet.

I hope everyone had a fabulous new year and wish you all the best for 2009!
xxxx

Ho Ho Ho Merry Christmas Everybody!!!

2008-12-16T06:30:00.000-08:00

Hiya, really sorry for the lack of news lately. We've just been really busy settling into our new home and getting ready for Christmas, it's a rather hectic time of year. In actual fact, there's not really been anything to report. We're still waiting for appointments for the Keto diet, EEG's and eye tests so no news there. We did his latest blood results back that show his immune system is fine, he's going to have the flu jab and an injection to help prevent another bout of pneumonia so that should help keep him well.
We're all sorted and ready for Christmas, Patrick seems to like this time of year, there's flashing lights everywhere and sparkly tinsel to play with, our lounge is like a giant sensory room!
We've just had Patrick's new big bed delivered this week and a mobile hoist and in the new year he'll be getting a new standing frame and a sleep system, his Christmas has come early!
As there's not much news I thought I'd use this post to share some gorgeous photo's of the boys and wish you all a very merry Christmas xxxx.

The Big Move...

2008-11-06T12:36:00.000-08:00

After a manic month and lots of sleepless nights (even more so than usual) we finally moved in to our new home last Saturday 1st November. We did it all ourselves, hired a van, rallied the troops and despite the appalling weather (it rained heavily all day) we kept smiling and got on with it, I have to say a massive thanks to all the boys (and girl) who had the job of lugging heavy furniture (Ash, Bill, Bruce, Stacey, Alec, Bobby & Andrew) I haven't found any breakages yet so they did a good job. Although we are still surrounded by boxes the new Bungalow is already feeling like home and I can already see the benefits. Patrick's positional chair is set up in the kitchen so he can be out there with me while I'm busy doing 'Mum stuff' he doesn't have to be left on his own to entertain himself anymore, and he can sit up to the table with us at meal times which is great. I can wheel him from the kitchen into any room on the ground floor, there are no restrictions which saves my back a lot of aching. Isaac is loving all the space in the new house, he even has room to practise his power slides across the living room floor so he's well happy!

There was one drawback to the move, we weren't allowed to bring our pets, Chewey the daschund and Poppy cat with us. There were lots of tears when we found out but we have found really good homes for both of them and they are doing fine. I still expect the dog to bark whenever someones at the door, it's all very quiet without them.

That's the move news out the way, on to Patrick. We had his 6 monthly appointment with his Neurologist Fiona yesterday. He's been fairly stable for the last 6 months, he's had good days and bad days in equal measure but we've coped OK and he's still happy and making small amounts of progress so that's good. We made the decision yesterday to go ahead and start the ketogenic diet. He will be referred to a hospital in Oxford and we'll have to go and stay there for a few days while they start him on it, he'll have to fast for 2 days and then start on a high fat diet, more info can be found on this fantastic website Matthews Friends. There is also a film called 'First Do No Harm' starring Meryl Streep which follows the true story of a family in USA and their battle to get their son onto the diet. I'm not sure yet when we'll be going to Oxford but it is likely to be before Xmas, I don't know how we're going to pack it all in! In the meantime we're increasing most of his anti epileptic drugs. We found out yesterday that Fiona is leaving to have a baby in December and will be on maternity leave next year, we were given the choice of different neurologists to see while she's away and have opted for Prof. Kennedy. We saw a lot of him before when Patrick was admitted and put on Vigabatrin, he seemed quite easy to get on with back then so hopefully we'll have a good relationship with him like we've had with Fiona.

We're off on a little holiday next week to recover from the madness of the last few months, and to recharge in time for the madness of the next few! Only going down to Centre Parcs in Longleat but we're planning on a bit of pampering in the spa and in the tropical indoor pools, I'm sure there'll be lots of photo's to share.

All was calm when...

2008-10-12T10:41:00.000-07:00

What a crazy few weeks with more highs and lows than Alton Towers!
We were just plodding along as normal, getting back into the swing of things after Brainwave and planning our next plan of attack on the local council when out of the blue a letter arrived from the housing department. As you know we have been battling with the housing bods trying to get re-housed in more suitable accommodation but they had insisted there was nothing they could do for us as there is such a shortage of council accommodation in our area. Anyway, just as we were about to take further action and start challenging their whole allocations policy they sent us this letter to tell us about a 4 Bedroom Bungalow, newly renovated that is currently available to rent privately in our village. The landlord of this property has just signed a contract with the council that states he must rent it to people currently on the housing register at housing benefit rates for the next 7 years. In return the council gave him a grant to help with the renovations. We didn't really know what to think at first but decided we might as well go and check it out. Turns out to be ideal, newly extended detached with massive rooms, big driveway and loads of options in terms of making adaptions for both Patrick and Martin all of which the landlord is fine with.
We tried to get the ball rolling and accepted the house straight away, we took Patrick's OT round to view it with us and she has agreed that it should work for us and will come and see us a week after we've moved in with some catalogues, we can get a mobile hoist for carrying Patrick through to the bath and a special height adjustable bed with sides (like a hospital bed really) to save me having to bend down to him all the time. As you can imagine we are over the moon that this house has been offered to us, it all seemed very 'too good to be true' for a while. For the first few days it was really frustrating not knowing if it was all going through alright, the woman at the council who deals with all the financial side of things wasn't in so we couldn't get any firm answers and I spent the whole weekend feeling physically sick worrying about it all. Half of me was worried that we wouldn't get it, the other half was thinking that if we did get it then something bad was gonna happen, sounds silly I know but we're just not used to things going our way this easily so I always feel suspicious of good luck. I kept feeling that if everything went right with the house then maybe something would happen to Patrick?
Seems like I was right to be worried as the following week Patrick started to show signs of not being well, he was really agitated and unhappy when he was awake and very sleepy. Although he didn't have a high temperature or anything at this point we all new something was wrong. We took him to the Dr's on the Thursday who diagnosed an ear infection and gave him anti-biotics, he perked up for a couple of days then Sunday night he was up with a fever and sounding 'chesty'. Monday morning his temperature flew up to 42 and he was very febrile, we got straight on the phone to the Dr's and took him in, he had no energy and was very quiet, not like him at all. The Dr stuck him on a Saturation monitor and his Sat's were at 84 which is very low and he needed oxygen. An ambulance was called and he was taken to Poole Hospital. An x-ray showed he had an infection in his right lung so they just gave him different anti-biotics and kept him on oxygen. The following day after his morning nap he woke up with a fever again and had another febrile convulsion, it seemed he had got worse again. Different Anti-biotics were prescribed and on Wednesday we found out he was actually being treated for pneumonia. While he was in there I stayed with him, we had our own room which was good but on Wednesday I came down with some kind of sickness bug (I think it was something I ate) and had to go home, I felt devastated to leave him but managed to draft in the cavalry, Mum, who stayed with him all night for me.
Patrick finally turned a corner on Thursday and started to look and feel a lot better but still needed to be on oxygen while he slept. All the while his Sat's were below 93 they wouldn't let him home, they were at 99-100 all day but dropped to 90 while he slept. By Saturday I managed to persuade the Dr's to let us go home, Patrick sleeps so heavily, especially with all the medication he's on, I doubt his Sat's are ever as high as a 'normal' child. They have never been measured while he's been well so I think if they were waiting for his Sat's to improve we'd have been in there forever!
Anyway, he's home now and apart from normal cold symptoms he's doing fine. They've just given him an inhaler to help with his breathing. While I was in the hospital Martin managed to get the council to start the ball rolling on the Bungalow and as far as we know we're moving in on the 1st November! We still haven't been able to put the notice in with our current landlord but will do that today and as he needs a full months notice the council will pay for any overlap in the rent. It's all a bit manic now though as we have to get packed up and sorted in two weeks, including cleaning this place from top to bottom and stripping it of any sign that our crazy family of 6 with two pets were ever living here (help!). We're at Naomi House this weekend which couldn't come at a better or worse time, then the week after we move in we're on holiday at Centre Parcs, so much to think about and sort out, I don't know how it's all gonna get done and I'm sure the next few weeks are gonna be a blur but at least I can say that we will be in our lovely, spacious, new home for Christmas which I hope will be a quiet one!

Brainwave

2008-09-25T00:41:00.000-07:00

Hiya, after another relaxing break at Naomi house (much easier the second time round) I have just got back from our trip to the Brainwave Centre with Patrick. What an experience. It's been an exhausting 2 days, especially for Patrick bless him, he's worked so so hard and was so well behaved and cooperative, I'm a very proud Mummy.

This was our first visit to the centre so we didn't know what to expect, we arrived on Monday (Me, my Mum and Patrick) and were shown to our Bungalow which was really nice, comfortable and well equipped. We had the rest of the day to chill out ready for the first day of the assessment on Tuesday. The day started at 9am with Music Therapy although true to form Patrick was asleep so missed that session. We did meet the therapist and she was able to show us what she would have done had he been awake and gave us some tips. I think Patrick would have enjoyed it really as he is very audibly aware and responds positively to anything that makes a good noise. The therapist recommended a book to us so we can practise Music therapy at home with him so I'll let you know how we get on (our neighbours are gonna love us!).

After this session we had to sit down and go over Patrick's history and answer questions on where we think his development is now. This was quite emotional really, I had prepared a timeline of events (I had to refer to the early posts of the blog for all the details) and whenever I'm forced to go over what happened in the beginning it just brings back lots of emotions and feels surreal. It's easy to forget that Patrick was in 'Status' for 12 days, that always gets me. It's a miracle he's even with us and although many would think he can't do much, I look at him and am amazed at how far he's come. Brainwave had received reports from his GP, Physios and his Neurologist and although I didn't read them all we were told that Fiona, his neuro had just written that they've ruled out any degenerative condition. Every time I hear that I feel a huge sense of relief, although as I've said before, I wont fully believe until he's had a few more scans. The physiotherapists were handed all his info before they met Patrick and even they said later that having read his history and known what he's been through in the past 18 months they couldn't believe they were meeting the same little boy.

In the afternoon Patrick had his main physical assessment. He was assigned two physiotherapists, Dawn and Margosha who put him through his paces for well over an hour, thankfully by this time Patrick was wide awake and on top form.

Although Patrick has regular physio sessions and Portage, this assessment was different mainly as we were given so much information and explanations as to why Patrick struggles with various things. Everything made complete sense too, it was a real eye opener really. An example is that although Patrick moves his arms and legs around quite freely, there is very little coordination and actually when you look at the way he kicks his legs about you can see that he really doesn't know they're his and although he can put his hands in his mouth, he can't really do too much else. He just isn't aware that his arms and legs are his or that he has this thing called a body. Normally a baby that is developing normally finds it's feet and has the strength to explore their own body and will naturally experiment and learn what to do with it. While Patrick was at the age when this should have happened he was too poorly and too weak so he missed a whole chunk out of his natural development. So, we have learnt that we need to go back a few paces with Patrick and basically introduce him to himself, until he can understand that his hands are is own we can't really expect him to be able to play with toys or try and reach out for things. There are various ways we can do this with exercises, the technical term for all this is 'spatial awareness' and is only one part of his programme. The rest of his tailored programme will work on improving his trunk control (his back) as this is really quite weak at the moment and there are exercises designed to improve the flexibility of his arms and legs.

After this long assessment we had a break and then Patrick had an assessment in the hydrotherapy pool. This session was brilliant, Patrick is such a water baby and is so relaxed in the water it's lovely to watch. He was put through his paces again and worked really hard but really enjoyed it too. We were shown lots of techniques and exercises to do with him, it's just a shame that at the moment we don't have access to a pool that is warm enough for him, only when we go to Naomi House. You can see that he would really benefit from regular hydro sessions but the provision just isn't there at Poole Hospital. He was in the pool for about half an hour then finished for the day, completely physically exhausted but you could tell his adrenalin was pumping and he had really enjoyed the day. Most children I'm sure would hate to be pulled about by strangers all day but as Patrick loves to be manhandled and thrown about he thought it was great fun!

So with assessment day over we went back to our bungalow and had a relaxed evening ready for an even more gruelling day 2.

The second day had a slightly delayed start as Patrick was asleep until 10:30 but thankfully because the physios were allocated to Patrick for the whole 2 days they could be flexible. They had taken all their findings from the assessment and created a programme of exercises and sensory activities for us to do at home. They have split the programme into 3 sections, 1to1 exercises that should take about 20 Min's daily, 2 person exercises using a therapy ball and roll that can be done every other day and a 10-15 Min's sensory section that Martin can do with Patrick while he is sat in his chair.

They spent nearly 2 hours going over the programme with Patrick and they videoed it and gave us a DVD to take home and refer to. Patrick was really worked hard as he had to do everything twice, once with Dawn and Margosha and again with Mum and I so they could see that we were doing it right. He was so relaxed and easy to work with so it all went smoothly. After lunch they took Patrick to the sensory room to practise his 'tracking' skills using lights. They noticed that Patrick is always distracted by lights and will always stare at the lights on the ceiling so they decided to use this for his advantage and in the darkened sensory room using different flashing toys his tracking and concentration improved straight away. We have used sensory rooms before but never in such a constructive way. They had a flashing tambourine at one stage and Patrick really responded well to that, bashing it with both hands and then turning round to me for reassurance. It was great to see his reactions to different things and spending 2 days just focused on Patrick really helped me see his potential and see that he really understands more than we give him credit for. After another session in the hydro pool after lunch we were finished. All 3 of us were totally shattered, Patrick must have felt so physically knackered but was on such a high that he sang for 2 hours solid all the way home (as did Mum and me!).

The tiredness has caught up with Patrick now and he had the best night sleep ever last night, slept from 8pm until 7am. He has had a couple of stronger seizures over the last 2 days but I was expecting that really considering how hard he's worked.

So, now we are all really excited about the programme and optimistic that it will work for Patrick. He has shown such strength over the past few days I'm sure that as long as we put the effort in and the time then he should really start seeing the benefits. We are booked in for his re-assessment in February and have full support from a regional coordinator until then.

Although Brainwave hasn't given us any big revelations, I had already heard of a lot of the techniques they used, what it has done is shown us how these techniques relate to Patrick. I have several books and catalogues that refer to 'spatial awareness' for example but I've always bypassed these sections as no one has really explained that Patrick would benefit from it. Now it seems obvious, it's just a shame that the NHS hasn't given us all this info before.

Back to normality, whatever that is!

2008-09-11T02:34:00.000-07:00

So, we managed to squeeze every last ounce of fun out of the summer holidays with a trip down to the Blue Reef Aquarium with SCARF. It was another great day and we were really pleased that even Patrick was able to take in his surroundings and was captivated by the fish. We have been to many places over the last month where Patrick hasn't really been able to see what's going on, most animals or birds we've seen have been too far away in their cages and Patrick just isn't able to focus and see them. With the floor to ceiling fish tanks we were able to push his buggy right up against the glass and the flickering lights in the tanks highlighting the colourful fish really caught his attention which was really lovely to see. He even had a close encounter with a starfish called Patrick and a giant crab! Isaac has gone back to school into year 1, he's already loving his new class and teacher, it's almost like he was never away. He's also started football training with Burton Youth under 6, scored 2 blinding goals on Saturday so we're hoping he's gonna be the next Walcott. Either that or he'll be a rock star, he's already becoming a bit of a Deva, this morning I walked into the lounge and caught the tail end of him singing to Patrick.

He said he'd made up a song about Patrick and if I wanted to hear him sing it I had to A) play with him in the playroom at Naomi House later and B) pay him 1p! I tried to haggle but he just said "look Mum, that's what all the other singers do". I'm sure all the professional stars out there let their Mums watch them for free, he'd better not be so tight when he's famous!

Patrick has been a bit poorly again over the last week, just another cold again but it always hits him so hard. He hasn't been having many seizures though which is good although he has had a couple of long ones and we've had to use the midazolam, I'm sure it's just because he's under the weather though. We've had a run of really bad nights with him waking up at all hours coughing or fitting but we're off to Naomi House today for another 3 night break so hopefully we'll be able to catch up on the lost sleep a bit.

I finally plucked up the courage to have all my hair cut off again. I've been growing it out for the last 5 years and it was looking OK but I've spent the last year with it in a pony tail as it gets in the way when I'm looking after Patrick and it took so long to wash and dry it was just a pain. So I went and had a morning of pampering in the salon, had it all cut short and dyed purple with blond highlights, a total change. My brother thinks I'm having a midlife crisis because I turn 30 next year but I've always been a bit of a nutter with my hair. I must admit when I decided to have it done part of me thought that if it all went horribly wrong and I ended up looking like a clown then at least people might stare at my stupid hair and not at Patrick when we're out and about. As Patrick is growing (he's huge already!) you do notice more people staring, I can ignore it to a certain extent but I feel awkward when strangers start talking to Patrick (usually when we're standing in a que for the checkout) and they get no response, I never know whether to explain why he wont acknowledge them when really it's none of their business anyway. I guess as he gets older and it becomes more obvious that he's disabled then people will probably stop trying to talk to him, which is sad in a way but easier also. Martin doesn't cope very well with the staring and tends to let people know in his own subtle way that he finds it rude.

Anyway, I'm off to finish the packing and do the chores before we leave for Naomi House later, I'll probably not get a chance to post for a while now as we're away until Wednesday then I'm off again for a few days with Patrick and my Mum down to the brainwave clinic next Monday. I'm sure I'll have lots to say about that so you've been warned!

P.S Just wanted to share this, Martin came across it on one of his Infantile Spasm groups. Thought I'd post it on here, mainly for the other parents we know that read the blog. xxx

Someone I love relies on me in ways you will never understand. Someone I love endures pain and challenges that break my heart and renew my spirit at the same time. Someone I love is unable to advocate for themselves for things that most of us take for granted. Someone I love will never have the opportunities that every child should have. Someone I love will need unconditional love and support after I am gone - this frightens me to the core. Someone I love encounters pity, stereotyping responses, and prejudice at every turn, because they look, act, and/or learn differently than others. Someone I love has needs that require me to allow "outsiders" to have power and input in areas that should be mine alone to meet. Someone I love will continue to look to me for everything in life long after other children are able to assume a place as part of the world. Someone I love has needs that require more time and energy than I have to give. Someone I love has needs that mean I am not able to meet basic needs of my own. Someone I love has needs that have become the driving force behind major decisions my family makes. Someone I love has changed me in ways I will never be able to describe. Someone I love has taught me about love and about the really important things in life...

2008-08-30T07:18:00.000-07:00

In need of a holiday!

2008-08-30T00:37:00.000-07:00

Not because I'm stressed at all but we have been so busy all summer that I need a week of doing nothing to get over it!
We really have had a brilliant few weeks, Patrick has been stable with good days and bad days but we've come to expect that. Isaac on the whole has been an absolute pleasure to have around so I will be sad when he starts back at school next Tuesday. Since my last post just 2 weeks ago we really have packed loads in, with trips to the cinema, the fair, Serendipity Sam's, art exhibitions, Poole pottery, the beach, we really haven't stopped. I won't bore you with the details of everything we've been up to but I would like to highlight a couple of extra special days we've had.

As Patrick attends Naomi House hospice we were invited to an annual event put on by the Starlight Foundation at Popham airfield in Basingstoke. We didn't know too much about it and very nearly didn't go as the weather forecast for the day was rain, thank goodness we went, it was an amazing day, the sun shone all day and it was a day we'll never forget. Basically, Starlight took over the whole airfield for the day, lots of local pilots volunteered themselves and their planes and gave every family (about 500!) a short flight. We managed to be the first family to have a turn, me, Patrick and my Mum went in one plane with Isaac and Martin following in one behind us. Mum sat in front and was given control of the wheel, she even managed to land the pane without too many bumps, an experience I don't she'll ever forget. Patrick was happy to be in the air although I don't think he really realised, choosing just to sit happily on my lap and chew his hands! Besides the airplanes there were helicopters, we gave Isaac Patrick's helicopter ticket as he would appreciate it more and Mum had never been in one so they both went up together. There were also dozens of different cars from sports cars to classic cars that were there, driving all the kids around the field. They had loads of motorbikes, a London bus, a fire engine and little hovercraft to have a go on. It really was a great day out. Lunch was provided and there were free activities and games in a big marquee so not only did all the children get to experience all the free rides, they also came away with free gifts and toys. We all had a fab day, I don't think Isaac really appreciates how lucky he was to get to try all the things he did in one day, but we certainly do and we're very grateful for all the effort made by the organisers and volunteers.

Another good day we had last week was hosted by a charity we have only just found called 'SCARF' like Coping with Chaos they organise activities and day trips for families with disabled children. The good thing about SCARF is that they operate closer to home with activities in Lymington and New Milton and the New Forest so we'll be able to get more involved. It also means Martin and I both get to meet other parents locally which is really important. We went along to a Football training day last Wednesday where Isaac got to join in with a coaching session run by professional coaches from Bournemouth FC. We were made to feel really welcome by both the parents and other children and we're now looking forward to a trip to Blue Reef Aquarium with them on Monday.

Our battle to be re-housed is still ongoing with letters currently going backwards and forwards between us and the council as we try to establish why we can't get further up the list. We have asked them to clarify how their allocations policy adheres to the governments housing guidelines regarding vulnerable children and also how they encompass the children's act into their points system. So far they have told us that they do take vulnerable children into account and would give priority to a child if they didn't have access to a garden or if they live above the ground floor in a block of flats. Unfortunately their current points system doesn't allow them to give priority to severely disabled children like Patrick who cannot be given the equipment he needs to help him to reach his potential where we are currently living, makes for an interesting case I think so I'll keep you posted on that one.

I would like to draw your attention to another website we have recently found out about called Post Pals. Patrick is too young for me to register him on there yet, he has to be 2 but basically there are many children with serious or terminal conditions that you could make smile just by sending a little something in the post. Anyone with children will know how excited they can get if they receive something in the post, even a postcard. This site gives details of lots of children that you can write too, a great project if you have children yourself, Isaac has chosen to write to a little boy called Jack who was born on the same day as him, Jack is currently battling cancer so Isaac is going to send him some colouring and sticker books. A simple gesture that costs very little but can mean a lot.

I would also just like to give a mention to my friend Karen who's son Luke (see earlier posts) was yesterday taken back into hospital after having 28 fits over a 4 hr period. Luke is just a couple of months older than Patrick and is a gorgeous little boy so we're sending lots of prayers and keeping everything crossed that they can get his seizures under control quickly and find out what's caused the sudden change.

Anyway, that's it from me, I've got lots of photo's to upload so I'll do that in a separate post, for those who aren't on facebook yet there are loads of photo's of our summer holidays on there so get yourself signed up!

Lots of love as always xxx

Summer Update

2008-08-16T09:00:00.000-07:00

Hiya, been so busy over the last few weeks we just haven't had time to really sit down and write a new post. I'll try not to go on too much and will start with the important bits first.

At the end of July we took Patrick for a check up at the Child Development Centre. Patrick's regular paediatrician is on long term sick so they've dragged another out of retirement to deal with her patients and although I have no doubts that this Dr has a wealth of experience, he really was 'old school' with his opinions and his manner, and Martin and I both found the whole appointment incredibly frustrating and a bit of a waste of time. The Dr got my back up from the very start reffering to Patrick's symptoms as problems and repeatedly using the term 'handicapped' which isn't at all politically correct these days. I asked for some advice regarding Patrick's eating as he isn't really making progress with his chewing and although he eats well we has to have everything pureed. I had hoped to be refered back to his speach and language therapist. Instead what we got was a 10 minute advertisement for a blender! The Dr hadn't listened at all, I already give Patrick the same food as us and puree it at home, in the end I gave up trying to make myself heard.
Also, he tried to tell us that "children like Patrick" wouldn't benefit from a programme like Brainwave and that we should not waste our money! According to this guy Patrick comes under the catagory of children where the damage has been done and there is little chance of him learning new skills as his epilepsy would interfere and wipe out anything he learns. We were a bit taken aback by this at first as none of the other Drs or specialists have said this before or been so blunt. We're definately going to disregard most of his comments though as he has no idea about what Patrick is capable of; he's spent five minutes looking at his file and formed an opinion after comparing him to other children he's seen. After voicing his views against programmes that use repatition he then proceeded to get on the floor with Patrick and showed us excersises to do with him and said "with enough repetition he'll eventually be able to do it himself"! A total contradiction! We know he didn't read all his file up to the part where it explains the progress he's already made as he still thought Patrick was on drugs that he came off months ago and he seemed unaware of the results of the most recent MRI which showed the white matter loss had in fact stopped. Patrick's neurologist has said that Brainwave could be good for him and she would be the best judge really.
Anyway, that appointment as I said was a waste of time, all we got out of it was some advice about Patrick's constipation and the confirmation that Patrick's development age is still around 3 months. And like we've always said, we're not bothered by his development age, it doesn't get us down to know that he's so far behind and is only making small progress, Patrick is Patrick and he is a happy, contented little man with a big character so that's alright by us.

So with all that off my chest I can move onto to the fun stuff!
We've had a really busy summer holidays so far, we couldn't do anything last year being stuck in Southampton hospital all summer so we've really tried to make the most of time this year. We've not been able to get away but have had lots of family days out including trips to Monkey World, Adventure Wonderland (with Coping with Chaos), Gunwharf, Ten-pin bowling and yesterday we had a fantastic day with friends Linda and Mervyn, mucking about in the water.
Patrick has been on fairly good form over the last few weeks, he even managed to stay awake for the whole of his visit to Julia's House last week and had everyone saying what a joy he was when he's awake!
In between all the fun days out we've had a few physio and portage sessions which have gone OK, Patrick has now been given a Corner Seat and a better Standing Frame so as ever our living space is getting smaller and smaller. We are still battling with the council over our housing needs, this will take time but we're confident it will all be sorted eventually.

Tired Bunny....

2008-07-19T11:53:00.000-07:00

It's been another long and very tiring week. Patrick has come down with yet another bad cough that has really knocked him out, he's not eating or drinking well and what he does manage to take in 9 times out of 10 comes straight back out so he's pretty low on energy. We took him over to Poole for his hydro-therapy but he was so sleepy that we actually managed to get him undressed and in the pool without waking him up, he just wasn't having any of it so they let him float about for 5 mins then got him out, of course as soon as we laid him down to get him dressed he was wide awake! We then had to take him straight for his hip xray which didn't go too well. They laid him on a couch and undressed him which was fine, then they lifted him and placed a thick wooden board under his back, as soon as they put him down he screamed. He really did cry which made me freak out a bit as Patrick just does not cry unless he is serious pain. The nurses all thought he was just a bit upset by the process and I had to convince them there must have been something that hurt him because I haven't heard him cry for months. They eventually decided that it must have just been the hard board hurting his back so they found some foam to put down to cushion it a bit and he was ok. We've got an appointment with Patrick's Paediatrician in a couple of weeks so I guess we'll get the xray results then.

We braved the rain on Thursdays to support Isaac at his first school sports day. It's not quite the same these days now that it's all non-competitive, they make it more of a team event now, loads of different activities with just one straight running race thrown in at the end. Isaac did very well though, his team won overall and he came 4th in his race.

On Friday we took Patrick over to Poole again, this time for his normal physio, unfortunately when we got there we were told that we should have been informed the session had been cancelled as his physio was off and his OT was nursing a bad shoulder so couldn't work on his exercises. Thankfully it wasn't a completely waisted journey, they let us use the sensory room and they fitted him with his arm splints. For someone who always has his arms bent at the elbow and loves to chew his hands he's actually taken to the splints very well and hasn't moaned at all. They are made of a soft material that is strong enough to keep his arm straight but flexible enough not to restrict him when he's fitting. We're just using them one at a time during the day, hopefully it will be enough to loosen his muscles a bit.

That's about it for this week, Isaac breaks up from school on Tuesday so hopefully the weather will start picking up a bit for the summer. We have heard back from the family fund and they have agreed to pay for Patrick's rain cover which is brilliant as we only posted the forms off on Wednesday!

We'll I'm off to put the poorly little man in bed and hopefully he'll have a peaceful, cough free night.

Busy, Busy, Busy! (Still)

2008-07-14T06:20:00.000-07:00

Hiya, it's a hectic couple of weeks with appointments every day for various things. Last Tuesday was a good day with both our new van and Patrick's new buggy finally arriving. The van is mega! So comfy and much easier to drive than I thought it would be, with a lift for getting Patrick in and out easily in his pushchair it makes life easier for me and minimises the lifting and carrying. Isaac loves the van mainly as it's big enough for him to run around in and kick a football in and he gets to sit up by the driver on occasions.

Patrick's new buggy is really nice, I'm not sure it will fit him for too long as they ordered the smallest size for him and it doesn't allow much room for growth (although they assure me it does). The only problem we have with the buggy is that the NHS wont supply a rain cover or any accessories with it so we have to buy our own. Because of the way the buggy is designed a standard rain cover wont fit it so unless we never go out in the rain (impossible in this country) we are going to have to try and buy the rain cover that is made to fit. I have just been given a quote of £207! This includes the price of a retractable canopy/sunshade that you have to buy in order for the rain cover to fit, it's ridiculous really and we are having to apply to the Family Fund to raise some money towards it which is madness but we haven't the choice.

Patrick started his hydrotherapy last Wednesday. It went ok but was a bit frustrating as we have to take him to Poole hospital for the session, it takes us an hour to get there and get parked and he only had 10 minutes in the water! The sessions are supposed to last 20 mins but he started to get stressed out so they got him out early. He was really enjoying it and was relaxed until the therapist kept dunking his face in the water (all part of the exercise I'm sure). He's only been given a 4 week course of hydro as demand is high so I can't really see how 4 sessions of 10-20 mins is going have any long term benefit but we'll see.
On the same day we had to take Patrick over to Southampton hospital for his regular check-up with his neurologist. We discussed his medication, it's still difficult to say whether this new drug is working as Patrick has had some bad days and some good days in no particular order, I'm sure his teething etc has a big effect on his seizures and Fiona said we need to work towards getting him to a point where teething and colds don't effect his fits but we're not there yet. We're going to persevere with the new drug and start taking him off the vigabatrin again in a couple of weeks. We'll be trying the ketogenic diet (that I've mentioned before) in the future, we want to try and wait until he's two which should be ok if he stays like he is at the moment and doesn't get any worse.

Patrick had a really good portage session this week, - when he woke up enough to participate! He is really starting to explore things with his hands which is good. Up until recently if you put his hands on anything to get him to feel it he would show no response, his hands would stay closed and he'd not try to feel it, now if you put his hand on something his fingers open and he'll make an effort to feel it, this is a very small step forward but as we've said before, any progress is good news.

We had a bit of a setback on Friday as we made a call to the housing department to chase up the medical panel's decision after we reapplied recently. It turns out that we were given the wrong information and the whole process of reapplying was a complete waste of time as we already have the maximum points that can be given for medical reasons, the panel weren't able to do anything more. We were led to believe that a panel could look at our case and make us priority or award us extra points but that isn't the case. We have been told that we have 65 points which is a 'reasonable' amount but that there are many families with higher points than us so with only around 2 properties becoming vacant a year, basically we have no chance. The only way we can get more points is if we plead poverty and go back to panel saying that we are struggling financially. Someone from the housing dept wants to come and see us to discuss our finances but to be honest because we're so careful of what we spend our finances are in fairly good order.
We are seeking help and advice from other sources at the moment and know we have a long battle on our hands, we have to keep trying though as we really are up against a brick wall at the moment.
This week is much the same as last, busy, busy but we did have a couple of hours off on Monday with Pam, Patrick's carer round to give us a break. Patrick is having his hips x-rayed tomorrow, this is standard procedure apparently for all children with development problems as your hips aren't fully developed at birth and rely on exercise and movement to strengthen the sockets, as Patrick hasn't been able to do this they need to have a look and see if his hips are ok.

Anyway, it's past my bedtime (which is 8pm these days!) so I'll leave it there and update at the end of the week.

Naomi House

2008-07-04T08:06:00.001-07:00

We've just got back from our first stay at Naomi House and we had a really great time. We didn't know what to expect and were really nervous about leaving Patrick in a separate room overnight but thankfully we were made to feel so welcome and Patrick's carer was great and really put us at ease. Patrick was given the 'Duck' room, really nice and bright with doors that opened out onto the garden which was lovely, our accommodation was upstairs, it was just like a good hotel, a family room with en-suite and a shared kitchen that was kept stocked up with essentials like tea, bread and homemade cake! Lunch and dinner were served around a giant table in the dining room so we could all eat together, proper home cooked food and lovely puddings, the diet was definitely put on hold for the week!

Patrick kept us all on our toes and had a bit of a bad day on Wednesday, loads of fits, some lasting as long as 9 mins. He was fine apart from that though, he's got some really big teeth coming through so that probably has something to do with it. We had planned to take Isaac out for the day on Thursday but as Patrick was being a bit unpredictable we just took him out for lunch and spent the rest of the day chilling out in the hydro pool. Isaac loved it at Naomi House, he basically had the run of the place, they have a fully equipped play room with every type of games console, we all tried out the wii fit on Thursday night and discovered that Martin aka snake hips is a champion hula hooper! I haven't laughed so hard in a very long time, we have to get one of those things!

They have a lovely big garden with every kind of ball game and bikes to ride on. They bought a little dog called Tumble round one day and Isaac was aloud to take him for a walk around the grounds (although that was a bit of a disaster when the dog smelt the rabbits and ran off!). Isaac also made use of music room and they both did some work in the art room, Patrick had his feet painted for a footprint picture and Isaac made some money boxes.

We spent a while in the sensory room with Patrick, and we made good use of the hydrotherapy pool on both days. It was really nice for me as although we had a busy few days there, I didn't have to do any chores or cooking and although I did still spend a lot of time with Patrick, Ann-Marie and Lucy who were his carers took care of all of Patrick's needs, they washed and dressed him, fed him and gave him his meds. I didn't have to worry about him at all I just got to spend real quality time with him and Isaac, it was great. It was nice too as Patrick, when he's awake and not fitting is so content and happy so he's quite nice to look after, he was never short of attention and had the carers fighting over him!. We really were able to relax there and we were all made a fuss of, Isaac always had someone willing to play football with him so he was happy and Martin and I were inundated with tea and cakes! The only downside to the whole week was the night time, especially Wednesday night. Patrick had had a lot of fits during the day and wasn't settling down to sleep. I left him in his cot at 8pm and went up to bed but when Martin looked in on him later he was still awake. This stressed me out a bit as at night time there are less staff on so the children don't have one to one care. Patrick was left in his room with an audio monitor on that triggered an alarm when he made a noise. The problem with Patrick is that his fits are silent. If he's awake and making noise then you can pretty much say that he's fine but if he goes quiet then it's likely that he's fitting. I was a bit worried that his silent fits would go unnoticed so I sat up with him, unfortunately he was being a bit of a monkey that night and by 11pm still hadn't gone to sleep. I managed to get one of the nurses to move his cot into a room next door where someone would have good visual on him all night so I could go to bed. When he did go to sleep he had a good night and slept until 6am. Apart from that I can't find fault with anything, and we have asked for another 3 night stay in September and a weekend in January.

This break couldn't have come at a better time really as July is a really busy month for us. Next week is particularly busy, with Isaac's sports day on Monday, the van and Patrick's buggy (yeah right!) arrive Tuesday, Wednesday Patrick starts his Hydrotherapy and we have a Neuro appointment at Southampton. Thursday Patrick has Portage and then he's having his MMR on Friday. Look out for a long post next weekend!

Patrick's world...

2008-06-29T00:27:00.000-07:00

A better week this week, it's been a quiet one so less stress all round. We finally got Patrick started on his Rufinamide on Tuesday. The hospital have given us his first months supply and he is on a gradually increasing dose, starting on 100mg (half a tablet) once a day then 100mg twice a day, increasing over the following weeks to 200mg twice a day. It's too early to say if it's working really, he is still having some strong fits, the day before yesterday he had loads of fits, more than usual. They were mostly mild but with a few really strong long ones. Yesterday he only had 3-4 during the day so there's not really a pattern emerging yet.

I thought it was about time I did a full update on Patrick's development so you have some idea of where he's at. It's easy to look at the photo's and see a healthy little boy who happens to have epilepsy. There's a lot more to him than that.

Patrick although seemingly thriving is still very far behind with his development. I read a book recently called 'How to rescue brain injured children' written by the founder of BIBIC which is another Brain Injury clinic in Somerset. Brainwave, the centre we are taking Patrick to was born out of BIBIC when some therapists thought that the BIBIC's regime of 6-8hrs of therapy a day was a bit extreme. Anyway. In this book it has pages where the development age of the child is measured by assessing various abilities, looking at this information, Patrick's development still seems to vary between 0-6 months.

Mobility is one of his worst area's as by 3 months of age a baby should be able to 'creep' on their stomach and move around. Patrick is now nearly 17 months and only just has voluntary movement of his limbs and this isn't very coordinated. Patrick will lie on the floor and kick his legs and flap his arms around like a newborn, he can get his hand in his mouth when he wants to but he can't reach for a toy very well (this is partly due to his muscle tone in his arms). He can roll over, which is progress but can't hold his weight on his arms so being on his front is hard work for him.

Patrick's Motor skills are poor, his hands are particularly tight, and are often clenched in a tight fist. Looking at the book his hands are only just on par with a newborn. He has a grasp reflex but his hands are often closed too tight, he will grasp our fingers but not for long, likewise, you can place a thin object like a rattle in his hand and he'll hold it for seconds before losing his grip and launching it.

His language skills are like those of a 3 month old, he can cry although he doesn't and he can make some vowel sounds 'aaaarrrhhhh' is his favourite at the moment. He is just starting to use 'M' and 'N' sounds but these just come out randomly, he isn't able to communicate what he wants, although his tone changes if he isn't happy so we have to listen to that and try and establish when he's not comfortable or if he's hungry, it's all guess work really.

Patrick's vision and auditory development are both good, he focuses well and will fix and follow on a moving object. He has good hearing and will respond to different sounds, e.g a sudden loud noise will make him jump, and he'll turn his head towards a sound. What is difficult to measure is Patrick's understanding of what he sees and hears. If we showed him a picture of our car, I'm not sure he would understand that it is a car although he goes in the car most days. We talk to him all the time about what we're doing but it's impossible to tell if he understands what we're actually telling him. Patrick just goes with the flow.

This all sounds a bit negative although that wasn't my intention, I just wanted to try and get across how Patrick is besides the epilepsy. Most people who read this blog don't get to see Patrick very often at all and those who do, usually see him asleep! With all the development issues it's hard to imagine that Patrick would be able to have such a character but he does. Patrick is very laid back and is a very happy little boy. He may not be able to communicate his needs but he has the most cheeky smile and finds almost everything amusing. Every morning Patrick wakes up at around 5am (or earlier) and starts the day by singing 'aaaarrrggghhh' at the top of his lungs, he'll have a few fits in between and as I refuse to function before 7am he'll lay there quite happily until we get up. As Patrick sleeps right next to me in his cot at 7am I get him out to give him a cuddle and as soon as I pick him up he starts laughing (this is usually accompanied by a large bout of wind!). He never cries unless he is in pain, and the lightest kiss on his nose can have him in hysterics, he'll lay on his bean bag blowing raspberries and clapping his hands while we run around fussing about, and despite all his problems he doesn't have a care in the world. We are satisfied that we are achieving what we set out to, which was to do all we can to make Patrick's life enjoyable and to help him reach his potential. Well, Patrick certainly enjoys himself in spite of his limitations and with the increasing amount of physio and the introduction of the Brainwave programme later in the year, hopefully we'll be well on the way to discovering what Patrick's full potential is.

So, hopefully that has given you a little bit more of an insight into Patrick's world. We are off for our break at Naomi House on Tuesday, we are looking forward to the rest but are also getting nervous as we're so used to having Patrick with us 24-7. It may sound silly as Patrick is only in a separate room and we're not really abandoning him but I feel so guilty already at the thought of putting him to bed and not being there when he wakes up. I'm sure after the first night we'll be fine and will wonder what all the fuss was about!

Note from Martin

We are delighted to announce the imminent arrival of a new addition to our family - OUR NEW VAN YAY! It is due to arrive on 8th July and we can't wait. Isaac is particularly excited about it and is planning what he is going to have in it for his comfort! Billy has cottoned on to the fact that he could earn a fortune by ferrying his pals about on a weekend. One of the words Gemma used in response to that idea was off. Lol.

Me? I just want a fridge to keep my Yorkie from melting.

Anyone got an old CB radio.................................? Breaker breaker......etc.......!

A frustrating week

2008-06-22T00:19:00.000-07:00

Hiya, it's been a pretty long week really with a few disappointments along the way. Firstly, we still haven't been able to start Patrick on his new medication. Patrick started the week pretty badly with lots of strong seizures and we were told on Wednesday we'd get the new meds Thursday, then on Thursday the pharmacist wasn't in so we were told Friday and then we were told it was sorted and that the hospital would be supplying the drug for the first month and that they would call us to arrange it but that didn't happen either. We can't do anything over the weekend so I hope we'll hear tomorrow now.
We STILL don't have Patrick's new buggy! The last we were told was that they had the buggy but were waiting for some supports that would take a week to come in, that was 3 weeks ago! Every week they say they're due but I think they're just fobbing us off. We've just found out our new Van is ready for delivery, it amazes me that they have been able to custom fit a 6 seat Renault Master from top to bottom with various pieces of equipment, a van that was ordered a good few weeks after his pushchair and the van is ready but the pushchair isn't, it's ridiculous really.
Patrick had physio on Thursday, unfortunately it wasn't the best session as he was really sleepy from a few bad nights fitting. He was examined by his physio and OT and his portage worker was there too. They're not too happy with his limbs, his legs and his arms are a little tighter than before, even though we've been working on them doing lots of stretching exercises. I'm pretty sure that his seizures don't help. When he has a strong seizure his arms and leg muscles contract and his arms bend fiercely at the elbow and his legs raise off the ground. As his fits have been quite bad for the last month it's got to have an affect. They have made the decision to have some arms splints made for him in the hope they might straighten his arms a bit. I'm gonna have to take him in some time over the next month. They let us take home a large therapy wedge to lay him on and they're going to put his name down for a corner chair that will help him sit in an upright position as he is showing more potential in this area. He starts a 4 week course of hydrotherapy next month that will hopefully help loosen his arms and legs a bit, he only gets about 20 Min's in the pool once a week though so I'm not sure how much good that will do.
We've taken the decision to enrol Patrick onto the Brainwave programme. This is an intensive programme of therapy aimed at speeding up the development process in Brain Injured children. They do this by designing a programme of exercises and activities that we can practise at home. It works on the principle that with enough repetition the brain will basically start retaining information and dormant brain cells can be 'woken' and used to learn these new skills. They cover all areas of development and the programme is totally structured so we know exactly what to do in what order and why. I think that this approach although had work (we have to commit to about 10 hrs a week) will hopefully work for Patrick. We have an appointment booked in September for his 2 day assessment (we get to stay down in somerset for a couple of nights) they will use that time to examine him and come up with a programme, we will then have to take him back every 4-6 months to be re-assessed. I have added a link to their website if anyone wants more info, just look at the list of links on the bottom left of the page.

Patrick is still obsessed with eating himself! He has lots of little cuts on his hands where he has chewed them and has taken large sections of skin off his fingers, he must have tactility problems because he doesn't seem to hurt himself when he's chewing and he has some sharp teeth! We've tried lots of things to stop him doing it or at least to protect his fingers from damage, plasters and socks on his hands but these just get wet and make his hands sore or they fall off. I have just ordered him some baby Ski mittens! I'm hoping that as they are padded and waterproof they may just stop him doing any more damage. It's a bit warm for gloves and a shame to have to cover his hands up but we need to find something that works.

That's about it really, we are a bit quieter next week and then the week after we're off to Naomi house for a few days. I'll let you know if we do start Patrick on his new meds.

Hope everyone is well, Love you lots, Gem xxx

We did it!!!

2008-06-14T06:46:00.000-07:00

Today was the day of the Charity Fun Run. Isaac and I completed the 3km run and Isaac managed to raise a massive £550 for the Childrens Trust Charity, not bad for a 5 yr old. Isaac actually ran most of the way round, only stopping for a little walk here and there, I had to struggle to keep up with him most of the way!

We had a great day and thank you all for supporting us xxxx

New Drug

2008-06-13T01:36:00.001-07:00

Hiya, been another busy couple of weeks and Patrick's seizures have been unpredictable but frequent, with some stronger than others. We took Patrick to see his neurologist and have now agreed to try out a new drug called Rufinamide. This drug is very new to the market and has only been trialed on children aged 4 and over who have Lennox-Gastaut Syndrome (a particular type of epilepsy) which Patrick doesn't have but his seizures have many of the same characteristics. At the moment we are waiting for Fiona to finalise the details and give us the prescription as this drug has literally only just been made available and isn't even in the books yet! We'll keep you updated as and when we start the treatment but keep fingers crossed.

Changing the subject completely, most of you will have seen the article about our gorgeous babies in the local news, we've been banging on about it for the past week! As you can imagine we were so proud and completely shocked that their story made the front page! I only contacted the Echo in the hope of just getting Isaac's name mentioned, didn't even expect them to print a picture so I embarrassed myself when I walked into Sainsbury's, saw the paper and shouted 'Oh my god that's my kids!'. We can't believe the response we've had to the story, in the past couple of days since the paper was printed the amount donated online has doubled and to date he has raised £522 for The Children's Trust, one particular lady donated £50 just off the back of the article. We have been asked to take Isaac along to meet the representative from The Children's Trust at the event on Saturday so they can thank him personally and his Headteacher is going to make a fuss of him at their school assembly today. The whole idea of me contacting the paper was to have the focus on Isaac for a change and let him take the limelight for being such a special boy, that has definitely happened and for that I thank everyone who has sponsored him and everyone who have sent such warm messages. I'm sure there will be lots of photo's of the day to follow. xxx

Update

2008-06-04T08:45:00.000-07:00

Hiya, had a really good trip to Naomi House last Friday. We were given a tour of the hospice and met several members of staff who all seem lovely. Naomi House is quite different to Julia's House, it's more like a private hospital. It's a great building in a really lovely location, surrounded by 'telly tubby' hills. All the children have their own room on the ground floor with doors that open onto the garden, and the family rooms are just above on the first floor. Patrick would have 1to1 care during the day and over night they have about 4 staff to up to 10 children but all the rooms have audio monitors. As Patrick has silent fits they said they would make sure his room was opposite the carers station so they could see him. We have been allocated 14 days that we can use this year although they are already pretty booked up. We are hopefully going to have our first stay there on 1st-3rd of July. We have asked for a 3 day stay as I think as it would be the first time leaving him (even if he is only downstairs) it will take us a couple of nights to relax enough to get a good nights sleep. We are going to have to go midweek and take Isaac out of school, they haven't got any weekends available until October but that shouldn't be a problem.

Had a good weekend, myself my Mum and Aunt did our 'Race for Life' on Sunday. Thankfully the rain did just about hold off and we managed to finish the course in 50 minutes which we were pleased with. We were a bit embarrassed to have been over-taken by a chicken, a giant bra and a lady on crutches but we managed to raise about £200 between us so we're happy.

Unfortunately Patrick hasn't had a very good week. His fits have been getting a lot stronger again. Last night he was particularly bad and from 2:30 - 4:30 he was awake and fitting quite badly one after the other, not really having time to recover in between. We gave him his madazolam which is his emergency med which did stop him fitting but it didn't last long and he was fitting again within 20 minutes. He did eventually manage to drop back off to sleep but was so exhausted this morning that after having his breakfast he slept right through until 2pm. I have spoken to his neurologist Fiona this morning who has suggested we go back up a little bit with his Vigabatrin, that will let us see if weaning that has made him worse and I have arranged an appointment with her for next Wednesday when she'll prescribe him something new.

Keep fingers crossed for him over the next few days, I'll let you know if anything changes.

Lots of Love xxx

P.S The photo above isn't us being cruel, we took the boys to a community fun day recently but Patrick slept through it. I always like to include Patrick when I'm taking photo's (I have a big collection of pictures of Patrick asleep in his buggy in various locations) and we didn't want him to miss out on the fun!

Thanks xx

2008-05-28T13:54:00.000-07:00

Hiya,

Just wanted to say a massive thank you to all those who have sponsored me for 'Race for Life' this Sunday, hopefully the rain will hold off and we'll have a great day.

Just to update, Patrick is over his chesty cold and for the last 2 days has been on top form, really alert and happy and only having the odd mild fit. This further proves what a difference it makes to his seizures when he's a bit under the weather, last week his fits were strong and long. We have been reducing his vigabatrin and he's now only on 3.5m twice a day so I think it's safe to say that the reduction isn't having a negative effect. I'm taking him in for his chicken pox vaccination tomorrow, they couldn't do it last week as he was too poorly but I got him some anti-biotics that have helped clear his chest.

We're still having trouble getting his new wheels, he was supposed to get them last Friday but yet again we were told his buggy hadn't arrived, the assessor is off this week so we have to wait until Monday to find out when we can have it.

After a visit from Patrick's social services OT last week we are now having re-submit our application for housing. The OT has had to close Patrick's file as we haven't got room for any more equipment which is frustrating, she sent a letter to the housing dept who have told us we have to fill in a whole lot of new forms and give more details about Patrick's needs and then they might give our file to a medical panel who would decide if we could get put at the top of the list to be re-housed. The whole process just adds more time to the wait and we're starting to really struggle now, Patrick is just getting bigger and heavier and more difficult to handle.

I had a really nice e-mail from across the globe yesterday, a woman got in touch who has a nephew called Bryce who is 10 months old and has epilepsy and loss of white matter, very similar to Patrick. It's always nice to hear from other families with special children, it always amazes me how our story can reach so many people and touch so many lives.

Anyway, lots to do, no time to do it!

Take care, lots of love

Gemma xx

A busy few weeks

2008-05-21T12:03:00.000-07:00

Sorry it's been a while since the last post, the last few weeks have been pretty hectic, nice hectic though I'm pleased to say. The weekend before last we had a visit from Martin's sisters, Mary and Angela and Martin's nephew Dan and his gorgeous daughter Honey. The weather was fabulous so we made good use of it and had a day out at the local food festival followed by fish and chips on the beach, good old fashioned family time, lovely. We were also able to set up Patrick's new 'Waterway' pool in the garden for the first time. It took him a few minutes to get over the initial shock of being plunged in the water on his own but then he seemed to relax and just laid back and floated in the water, pushing himself off the side every so often. The pool is supposed to help him build up his muscles and encourage movement, I think if he uses it regularly enough it should work but unfortunately he's been full of a cold since that weekend so we've not put him in it again yet.

Patrick had another good physio session last Thursday, he saw his physio and OT who are both pleased with his progress. They said that his sitting position is good and he's showing much more potential than they had previously thought he might. However, they are worried about his elbows as they are really tight and need a lot of work to loosen them up; we have to stretch his arms right out several times a day which is quite uncomfortable for him but if we can't improve them with the exercises he may end up needing splints which wouldn't be nice. Patrick has now been given a standing frame to use at home. They have managed to hunt out one that can be folded away which is better as we are so limited on space at home. He should be using the frame for about an hour a day, at the moment he manages about 20 mins before getting the hump so we'll build him up to an hour over time. We had a visit from Anne, Patrick's new social services OT, yesterday who has had to close his file for now because although she could get us extra equipment for Patrick, we just don't have the space to accommodate any more.

The weekend just gone was an extra special one as we went to Warwick for my Dad and Allison's wedding. We made a weekend of it and went up on the Friday. It was a bit of a nightmare with everything we had to take; we took Patrick's Bee chair and his pushchair and he had one little suitcase just for his meds! Anyone seeing us arrive would have thought we were there for the week! Anyway, we had an amazing weekend, the wedding was fabulous and both Patrick and Isaac were on best behaviour - Isaac was a ring bearer with his cousin Owen and they did a smashing job. The only downside to the whole weekend was the fact that due to his cough and teething Patrick's epilepsy was quite bad, during the wedding service he actually had a seizure that lasted 10 mins, so we were a little on edge the rest of the day but he was OK.
On the Sunday after the wedding we went to visit our friends Karen and Gordon who only live about 30 mins from Warwick. They have just built their son Luke a little sensory room so Patrick was able to try it out which was great.

This week has been fairly quiet so far, Patrick was supposed to have his chicken pox vaccine on Monday but because his chest is still bad they wont do it so we've re-scheduled for next Thursday. We have Martins Dad coming down tomorrow for a few days, it's half term next week, we've not got anything planned but hopefully the weather will stay nice and we'll be able to give Patrick's new buggy a good run out (we should be picking it up this Friday). We are going to visit Naomi House next Friday as we finally got the news that Patrick has been accepted by them. We get 14 days pro-rata to use over the course of the year, Naomi house is in Winchester and does overnight respite care where we can leave Patrick in a room with the carers while we have use of a family room upstairs so it's not like we're leaving him completely and at least we might finally be able to get a couple of nights sleep. I'll let you know more after we've been there.

Anyway, I think that's about it for now, sorry it's been a long post.

Hope everyone is well and thank you all for your continued support and good wishes.

Lots of Love xxx

Patrick's New Buggy

2008-05-09T06:34:00.000-07:00

Had a really frustrating few weeks trying to get hold of Patrick's new pushchair. We should have had it by the end of March but were told the manufacturers were holding things up. We then found the buggy had been delivered to the wheelchair clinic two weeks ago but had to be assessed and yesterday we were told that the buggy was no good and they wouldn't let us have it! You can imagine our frustration, especially as Patrick has seriously outgrown his normal pushchair and it's getting harder and harder to take him out.

Anyway, they invited us down to the clinic today to check out a different buggy called a 'Bug' (pictured above). It's not quite as flashy and 'normal' looking as the one he was getting but this new one is actually much better. The whole seat looks much more comfy and supportive and it just looks like a more sophisticated, expensive bit of kit. We're a bit annoyed that we weren't offered this one originally but at least he's getting one now and it should only take 2 weeks to come through. We've been lent an old one in the meantime which is a bit 80's looking and has obviously had a lot of use but it's only for a couple of weeks so we'll put up with that.

The morning after...

2008-05-02T01:14:00.000-07:00

It's been a strange 24hrs, yesterday was such a roller coaster of emotions. I spent the morning visiting my late Grandma's grave to place flowers. I shed some tears and said some prayers for some good news but didn't get my hopes up. As we made our way to the hospital for the results I felt physically sick all the way, I have no finger nails left at all! I wouldn't say I was pessimistic but I was ready to hear some bad news. When the Dr said those magical words 'he hasn't lost any more white matter' it took a few seconds to process the news, when she went on to say that unusually it seemed that his brain was desperately trying to repair itself I nearly cried. I have never felt so relieved in all my life, I also felt so proud of our special, strong, amazing little boy. He is such a fighter and just an inspiration.

It was a strange evening, although we are obviously all thrilled with the news it was almost an anti-climax. That may sound strange but I suppose trying to analyse it, we have always been very positive and happy, even with the thought of losing Patrick in the back our minds, and now we still feel positive and happy. So not a lot had changed.

Today I woke up with a renewed energy, I feel 'up for it' (whatever 'it' is?!). As I walked Isaac to school the sun wash shining and I had a spring in my step, I looked at Isaac with a smile as one thing that has gone is the fear of having to explain to Isaac why his brother was dieing. That sounds horrible but throughout all of this, as soon as we were told originally that Patrick's condition was terminal that has been my biggest fear, Isaac adores Patrick and I had no idea how I would deal with Isaac if Patrick did deteriorate. For now I don't have to worry.

As I'm writing this I'm welling up and the sense of relief is growing stronger, I guess the good news is slowly still sinking in. I haven't told anyone this but over the last 6 months I have had many nightmares of having to plan and attend Patrick's funeral, morbid as it may seem that has been our reality. That reality has gone and that is the most wonderful feeling. I have always been too scared to look to the future, choosing instead to live each day at a time, now I can look to the future and still see Patrick in it, smiling away. That's done it, the tears are out! I think I need a good cry anyway.

I don't think we will ever lose our fears completely, Patrick still has a long hard journey ahead of him, without knowing more about the damage to his brain controlling movement, we don't know how well he might progress and his epilepsy is still a danger but instead of looking for a sign he's losing skills I can relax and look at signs he's gaining them.

Martin and I have both said this morning that however relieved and happy we are at our news, we both feel a sense of guilt for all the other parents we are in contact with who are waiting for some good news themselves. With any luck their good news will come, I was thrilled to read Jude's blog this morning to see that he had smiled, twice!

Anyway, I'd better put this renewed energy to some good use and go and do the washing up, I'm not sure how long it will last!

News just in...............

2008-05-01T08:07:00.000-07:00

Hi Everyone

We have just got home from the Hospital and have got Patrick's MRI results. Guess what - he passed!

The short answer is that it is good news basically.

There is no sign of further loss of white matter that they can see which is brilliant news for us as you can imagine. It also looks like the brain is trying to regenerate some areas where there has been loss and generally his brain has matured and grown. That is also very good news.

The ratio of grey to white matter is still not as it should be but again, no signs of it worsening and they have now been able to identify that the area responsible for his limbs (motor and nerves) is lacking in growth and structure. While this is an area of concern it is also good that it has shown on the MRI as investigations can continue in that area now. The part of the brain that links both sides has shown great progress in growth and structure/maturity too. This also controls or has an affect on his co-ordination.

The structure of the outside of Patrick's brain is also showing great improvement and has all of the characteristics that is expected. All of the bumps, hills and valleys as it were, so we are really pleased about that too.

All in all, a great result for Patrick and wonderful news for us, his family. We still don't know what that means for his future but we see that future as being far less bleak and a lot less scary.

We are on cloud nine at the moment and are trying to take in the news fully but rest assured - we are very happy bunnies right now. What a great kick-bum day we are having!

Love to everyone from Patrick and his roadies

xxxxxxxxxxxxxxxxxxxxxxx

Rolling over!

2008-04-18T01:27:00.000-07:00

Just a bit of video footage we took of Patrick rolling over, he's a very clever little man. xx

No news yet.

2008-04-17T12:44:00.000-07:00

Unfortunately there's going to be a bit of a delay in us getting Patrick's MRI results. When we turned up for our appointment at Southampton today we found out Patrick's neurologist had been trying to contact us all day to let us know she hadn't been able to view the scan results yet. She is now off for a break so we've arranged to go back in May when she's back and has had a chance to look at them.
Fiona was able to give us some good news though, Patrick's EEG results showed an improvement. Every previous EEG has shown seizure activity and constant 'background activity' that they haven't been able to explain, but from what we understand any kind of background activity would have an effect on Patrick's development and ability to focus. What they can see now is that Patrick's EEG is nearly 'normal' but he still has bursts of background activity. We can only assume that this improvement is due to his medication and the fact that his seizures are now fairly under control. Having said that, Patrick's seizures have been getting stronger over the past week, I don't think that it's because we are reducing his vigabatrin as I believe they were starting to get a little stronger before then. I actually think there's been an improvement since reducing the vigabatrin, Patrick has been really interacting and has been more vocal over the past few days, he's a happy little boy at the best of times but he's been even more so the last couple of days, even Fiona managed to get a giggle out of him today, she said it was the best she's seen him. We've decided to up his Carbamazepine a little bit to see if that calms his seizures again so fingers crossed.

Anyway, it's been a long day so I'll keep it short and of course I'll let you all know when we have the MRI results. For now we can relax for another couple of weeks before the nerves start to kick in again.

Meet the Patersons

2008-04-16T04:46:00.000-07:00

Well, we finally got to meet the Paterson family who travelled down from Staffordshire to see us over the weekend. I'd met Karen via a website called 'contact a family' that puts you in touch with families in similar circumstances and we instantly hit it off and have been phoning each other regularly for the past few months, it's really nice to be able to have a moan and a laugh with someone who totally understands your frustrations. Anyway, Karen is married to Gordon and they have Ellie who's 4 and little Luke who is 15 months. Luke is very similar to Patrick as he too has severe Epilepsy/Infantile Spasms and developmental delay. And like Patrick he's totally adorable and very snuggable!

It was a really nice weekend, we took the kids to the beach on Saturday and to the holiday park disco in the evening and then went to Christchurch quay for lunch on Sunday, so lots of fresh air and family fun, just what we all needed.

Patrick goes global!

2008-04-11T03:23:00.000-07:00

It's official, Patrick is now famous in the USA! Well, maybe I slightly exaggerate but a very great lady called Beth who's son Ben is Epileptic took part in a charity walk for Epilepsy and as you can see from the photo's Patrick got a mention on her t-shirt, (on the right side of shirt) how amazing is that?! Beth raised $2500 dollars for Epilepsy research which is a fantastic achievement. Martin met Beth online through one the Infatile Spasm news groups he's a member of, these groups are a great way for us to find out about other people's experiences, medication and new equipment eg. The Waterway Swimming sytem mentioned in a previous post. The pictures below show Beth's t-shirt which she used, in her own words, to 'Honour' all of our children. There are many kids from the USA mentioned on the shirt as well as a number from outside the US too. One of the pictures shows Beth's gorgeous son Ben and another little Infantile Spasms Champ - Rohan! Well done to everyone who took part in the walk - you are all Champions in our eyes! This is a good reminder that we are not alone in our journey alongside Patrick and there are other kids dealing with similar challenges to his. Well done Beth and thanks from all of us here, especially Patrick xxxxxx

Latest News

2008-04-10T05:57:00.000-07:00

Hiya, had an appointment at Southampton Hospital today with Dr Fiona Goodwin, Patrick's Neurologist. It was just a check up so there's not lots to report. Patrick was pretty sleepy when we got there so although Fiona was able to see him awake, he wasn't too responsive and he seemed to drift off into an absence seizure at one point, this is something we've seen before but usually only when Patrick has just woken or is really tired. Patrick had his weight taken, he's currently 11.6kg (25lb) so he's quite a heavy lad. He also had his head circumference taken and this came out at 45.3cm which is well below average. Apparently his head has grown from last time but it is significantly smaller than what it should be which is usual in a child with such major development problems and it indicates that his brain isn't developing normally, which we already know really.
We're going to withdraw the Vigabatrin but we'll do it very gradually, the last time we withdrew it it seemed to have an adverse effect on his seizures but he's so stable at the moment and we know that the clobozam and carbemazepine are working so now is probably the best time to get him off it.
We also discussed Patrick going on the Ketogenic diet, this is a fat based diet that is a great commitment but it is proven in a lot of cases to reduce seizures in children like Patrick. In lots of cases if the diet is working well it is even possible to withdraw all other medication. It looks like the Ketogenic diet will be the next course of action if/when his current meds stop working.
There's been another change to all our appointments now, we're taking Patrick back to Southampton on Monday for his EEG, then Tuesday for his MRI and we'll be going back on Thursday for the results.
Dr Goodwin is still waiting for some genetic tests to be processed but as before the few results she has had back have come back normal. She is now going to refer us to the Geneticists who may be able to get the tests done quicker and they may have other suggestions.
Also, it may be possible to get Patrick the chicken pox vaccine on the NHS, Fiona will speak to our GP and try and arrange it.

That's about it really, of course I'll be updating next week when we have the results of his MRI.

Take care, lots of love, Gemma xxx

Race for Life

2008-04-08T12:03:00.000-07:00

Hiya,

Just a quick one to say that this year myself, my Mum and my Aunt are entering the Race for Life in Portsmouth on 1st June in memory of my Grandma (their Mother) who sadly passed away 2 years ago after a long battle with Cancer. If you would like to support us please visit my sponsorship page here.

Thank You xxx

Busy Busy

2008-04-08T01:45:00.001-07:00

Had a great 2 weeks as Isaac was on his school holidays so we were able to have lots of quality family time. We've been swimming lots with Isaac, Patrick has been once and he seemed to enjoy it but was a bit too tired to appreciate it properly.

On Saturday we went over to Montecute School in Poole to take part in a 'fact finding' event laid on by coping with chaos. The government have given the whole of Dorset around £4 million to spend over the next three years on short breaks for families with disabled children, this could be anything from a 2hr restpite at a leisure centre to a week long family break. There was loads for the kids to do and Isaac had a great time, there were clowns and jugglers, a disco and bouncy castles and while Isaac played, we had to join in a group discussion and say what we would like the money to be spent on. It was well worth attending and it will be interesting to see what the outcomes are.

On Sunday it snowed! We rushed out to play in the snow as it so rarely snows down here and on the very odd occasion that it does, the snow melts before you know it. As we were caught unawares, we only had some peeled baby carrots for a nose and two brussells sprouts for the eyes on the snowman that we built!

We were over at Julia's house for their toddler session yesterday, we were able to take Isaac as well as he had an inset day. As soon as we walked in Isaac was kept busy and more or less given the run of the place, he was dressed up as a Pirate and hunting for treasure in the sensory garden, it was just great to watch him having so much fun. Patrick actually stayed awake for the whole morning which was a first so he was able to play with the toys and enjoy his surroundings, he's always made a fuss of when we go there so he's really relaxed there. These toddler sessions are also a great way of meeting other parents in our situation, you can share experiences and pick up tips which is always use full.

We have several appointments coming up over the next few weeks, we're seeing Fiona, Patrick's Neuro on Thursday and then his MRI scan is next Tuesday 15th (it's been brought forward). He then has an EEG scan on 25th. He's doing really well at the moment, his fits are still very mild and he's only having up to 6 a day. He's made real progress rolling over now which is great, more often than not now he will roll right over from his back onto his tummy which is brilliant. He's still struggling to pull his arms out from under him so he gets a bit stressed out but the more he does it and the longer we leave him to struggle each time, I'm sure he'll keep getting stronger, it sounds a bit harsh to watch him struggle but if we jumped in and sorted him out every time he's never going to learn to do it himself. His grip seems to be getting a bit stronger as well now and he's showing a bit more interest in holding things, if we can get him holding things that will make a massive difference to his development I'm sure.

We're not getting Patrick's new buggy for another couple of weeks now, after chasing it up I've been told that as we're having it modified a bit they need extra parts which is holding it all up. We should have it by the end of the month anyway.

We're really looking forward to this coming weekend as we're having some very special visitors. Over the last few months I've built up a friendship with Karen who has a son called Luke who is just like Patrick only a couple of months older. We met via a networking website and she and her family are coming down to meet us this weekend. It will be really great to meet face to face and share experiences. It will be nice for Patrick to have a play mate and Luke has an older sister the same age as Isaac too. I'm sure there will be lots of photo's going on here soon.

Anyway, the supermarket beckons so I must get on, I'll update after Patrick's consultation on Thursday. xx

Water Babies

2008-04-03T03:15:00.001-07:00

Hi all,
just a quickie to say that we have been enjoying the swimming at the local holiday camp that we joined. Isaac has really taken to the pool, especially since taking swimming lessons locally and now loves larking about in the water.

Patrick enjoys the water but being held all the time does restrict his movement and I assume, his pleasure. With that in mind, we have recently come across this website here which sells a swim system for babies with developmental delays or other disabilities. There is also a video on youtube here which shows you just how beneficial it can be.

From our point of view, we would be looking to use the ring part at the swimming pool but we can also use the pool (that is included) at home and even in the garden during the warmer weather. It looks like a great way for Patrick to excersise and build up strength in his limbs. One of the reasons that he is such a big fella is that he is unable to move enough to burn off the calories so this will no doubt help.

We are just waiting for a reply from the Company to clarify whether there are any weight limits or whether the rings are sized according to baby weight etc. If all goes well, we will get one and there will no doubt be some video on here very soon of Patrick using it.

We hope everybody is well.

Love from all of us here
xxxxxxxxxxxxxxxxxx

Panic Over

2008-03-28T01:57:00.000-07:00

Just a really quick note to let you know that Patrick has gotten over his cold and for the past two nights has slept soundly only waking once or twice which is fantastic! Also, he seems to be back to eating a little better, he ate all his breakfast this morning which is a good sign.

Got Patrick's scan date through, he's going in on 17th April so no doubt the next few weeks will be stressful as the nerves build up. Anyway, we want to get it over with so at least we know the waiting game is nearly over.

Forgotten what sleep is!

2008-03-26T01:34:00.000-07:00

Hiya, just when it was all going so well Patrick catches yet another cold!
Bless him, he's poorly again with a really bad chest, blocked nose, bad cough, the usual really, which means that he has even more desrupted sleep than usual so Martin and I are walking round like zombies!
I've been feeling quite sad this week as well which is probably a result of being so tired but I'm starting to feel the strain of waiting for the next scan (which we still don't have a date for). We know he'll be having one within the next month or so and we are both starting to feel a bit nervous and anxious about it. Patrick has really shown some progress since the last scan and we have been really encouraged by that but as the next scan draws nearer I am starting to prepare myself for bad news, I'm getting paranoid that he's losing skills. I was upset yesterday as for a few days now Patrick hasn't been feeding properly which is really unlike him, I've been stressing out thinking 'maybe this is the first sign?'. When I talked to Martin about it he made me see that actually, Patrick isn't eating properly because he's refusing the food. I'm trying to feed him, he has a few mouthfulls then clamps his mouth shut and just wont take any more, for whatever reason, he has decided that he's not going to eat and he's not going to open his mouth for anything. If he had lost the ability to eat, surely he wouldn't be clamping his mouth shut? I guess we should feel encouraged that he's able to make a choice, even though it's frustrating when he's not finishing his food, he is pretty poorly at the moment so he's probably just not in the mood for food. He's just keeping his Mum on his toes!
I've been giving myself a hard time for having negative thoughts about how Patrick is doing, but the reality is that until we know differently Patrick has a degenerative condition so on that basis I think I should be allowed to have a few days when I feel sad. It seems that for the last 3-4 weeks Patrick hasn't really made much progress which is frustrating but as we've seen in the past, he'll learn one new skill, first it was holding his right arm out in front of him to examine, he did this all the time for weeks to the point where I started to think it was an involuntary movement until he learnt how to clap, then he stopped waving his right arm and now he claps all the time! I'm sure he'll find something new to amuse himself in his own time. I think as we're told he'll start losing skills we become desperate to see him gaining new skills to prove them wrong, at the end of the day we haven't a clue what his limitations may be or how much he will be able to achieve which is really difficult to deal with. There are no books or websites we can look at to find out what the next milestone should be, we have to let Patrick do things at his own pace and just wait until he surprises us all with his next trick!

On a happier note, we had a lovelly Easter weekend, had Sunday roast round my Mums house and got way too much chocolate! Isaac and Patrick did an egg hunt around the house as it was raining (well I say that Patrick did it, his Uncle Bruce ran around collecting eggs with Patrick in his arms but I think that Uncle Bruce had more fun!). Also in the news is that Patrick's biggest brother Ashley is coming home from the canaries next month. He's been out in Gran Canaria since last November but has now decided he wants to come home, so we'll be back to a full house!

That's about it really, we're having a chilled Easter holidays which is just what's needed really. Oh, nearly forgot, we've just put an order in for a new car, well I say it's a car, it's actually a HUGE wheelchair accessible van, a Renault Master Versa which is being custom fitted out to suit our needs, it's fab as it has an electric lift at the back so Patrick can be wheeled in in his buggy and the buggy is strapped in place. The sales rep came out a few weeks ago and we played about putting all Patrick's equipment in which still took some doing even in a big van but we managed to get it all in with room to spare so that will make things a little easier. We won't get the van for around 16 weeks so just in time for the summer holidays.

Anyway, that really is it for now, I'll update some time next week. xxxx

A Good Week

2008-03-21T01:16:00.000-07:00

Hiya, had a busy but good week this week. I took Patrick to his first group physio session on Tuesday which was good, he got a bit upset when he had to do his stretches, especially his leg one's, it would seem we need to do a bit more work on his legs as his muscles are obviously quite tight. There were three boys in the group, the other two had cerebral palsy and although they were the same age as Patrick they were both about half the size, I'm not sure if they were under-sized or if Patrick is over-sized but I think it's the latter as Patrick is a bit of a chunk!

Yesterday was a great day as we took Patrick over to Julia's House, Isaac had an inset day so he could come with us which was good for him, he's not been to Julia's House before, only heard about it from when we've taken Patrick before and he gets pretty jealous and has actually said that he wants to be disabled because it seems like Patrick gets all the fun! He clearly doesn't quiet understand what it means to be disabled which is fine. Anyway, as soon as we got to Julia's House the staff there made a real fuss of Isaac which was brilliant, they took him off to the play room and he came out half hour later having made about half a dozen Easter baskets filled with sweets! Patrick was pretty sleepy all morning, we left him at Julia's House so we could spend some quality time with Isaac. We took Isaac to an indoor play centre just down the road and then went for lunch. We really had a great time, it was so nice just to be able to concentrate our attention on Isaac for a few hours. It was the first time we have left Patrick on his own at Julia's House and he was fine, he actually slept all morning and woke up just as we turned up to pick him up! It was nice because I thought I might be a bit anxious leaving him there but I wasn't at all. There are so many lovely staff to look after him, they allocate one carer to each child so he always has someone with him and there are usually more carers around so he gets loads of attention and cuddles which is really all he needs. It was really good to see how Isaac reacted to the other children at Julia's House, it was quite busy there yesterday with lots of young children with various degrees of disability. You would think that Isaac might be a little bit phased by it all as although he's used to Patrick being disabled, Patrick doesn't look poorly like most of the other children. I was so proud to see that Isaac really wasn't phased one bit, he was interested and concerned for all the children, especially a little girl who is totally blind, and he sat next to another little girl as she lay on the floor being tube fed and chatted quite naturally. I think all this experience will make it so much easier for him to deal with anything that Patrick may or not have to go through in the future.

By the time we got home Patrick's new positioning chair had been delivered. It's fantastic, called a Bee chair (for obvious reasons). It's much better for him than the one he has been using, he just looks so much more comfortable in it. Hopefully his new buggy should be ready within the next few weeks then he's sorted.

Well, it's now Easter holidays, we've not really got much planned, Patrick has a few appointments over the next couple of weeks so we can't really go anywhere. We have taken out club membership of a local holiday park just down the road. We thought it would be good as we want to take the boys swimming. The local swimming pools are always busy and you are so restricted to when you can go because of the swimming schools, so now we have membership to a holiday park that has a really nice indoor and outdoor pool, open all day every day and during term times the pool is usually totally empty. We will be able to take the boys any time we want and have the luxury of the quiet, and space. Also, we plan to use it as a place to go to relax, we can get Patick's carer to sit with him for a few hours while Isaac is at school and Martin and I can go and make use of the pool, which also has a jacuzzi, sauna and steam room. We can also make use of all the other park facilities including the kids club and evening entertainment so it gives us something to do on a rainy day and through the summer if we're not able to get away much.

So, that's about it really, I'm sorry if I've rambled a bit, it's becoming a habit!

I hope you all have a great Easter break.

Take Care, Love Me xx

False Alarm...

2008-03-13T03:49:00.000-07:00

Hiya, Thankfully I think it's now safe to say that the boys are not getting chicken pox! At last we can relax a bit and get back to our 'normal' chaotic life of appointments every five minutes!
Patrick did develop a rash of red spots all over his body that lasted a good few days but I think our GP was right and that it was part of his respiratory infection. He is now over this, he still has a cold but that's typical of Patrick, he is back to his normal happy, noisy self which is great.

Just thought I'd highlight a few comments from Patrick's recent Paediatric Assessment Report:
"Patrick is making progress in his development although at a slow rate. He can hold his head up for a short time and can roll over. He can hold his dummy and put it in his mouth, and can carry on clapping his hands after someone has them for a game of "pat-a-cake". He is very vocal and shows anticipation during feeding and tickling games."
"Patrick looked very well today and is thriving. He had one brief jerk during the session....Patrick's development was as described by his parents. He has mildly increased tone in his limbs with ankle clonus, but a good range of movement at all joints....he has active movements of fingers and toes, and I do not feel he is showing and signs of peripheral neuropathy."
Conclusions - "Patrick has made progress since last June and I was please that he has recovered vision. He is able to show awareness of his surroundings but only for brief periods, and does pay more attention to his own sensations. He is showing skills around a 3 month level."

So, not really anything that we didn't already know but it is nice to get written confirmation that there is definite progress, however small.

And Patrick's not the only one doing well at the moment, Martin went along to Isaac's parents evening on Monday and we're proud to report that he is also thriving, exceeding academically and socially and gaining in confidence. He even pushed someone over in the playground the other day! When questioned about the incident though he explained that the boy had pushed him over first and that he was standing up for himself (a big turning point) they both got a talking to but his teacher said that it is positive that he is learning to defend himself. We are always concerned about how our circumstances affect Isaac and are worried that he might suffer a bit because of the stress at home but his teacher assured us that we have nothing to worry about, and that he is a really great member of the class.

So, we're really proud parents at the moment. Nothing else to report really, as Patrick is better we're taking him to a group therapy session (play/physio therapy) next Tuesday then Julia's House on Thursday so the Diary is already filling up again! We've got a rep from Motability coming to see us tomorrow to demonstrate a Renault Master for us. We desperately need a bigger car that can carry us and all Patrick's gear so fingers crossed that may be sorted soon.

Hope everyone else is doing OK, take care, Love Gemma xx

Wanted to share this

2008-03-12T06:42:00.000-07:00

Hi all

This isn't necessarily something that would help Patrick's condition but it is such a wonderful thing to see, I wanted to share it with you. I know that people outside of our immediate family also read Patrick's blog and this might be of interest to them maybe more than it may be of use to use.

The following link takes you to a bit of film from US TV and concerns a little boy with cerebral Palsy who was given his own stem cells via a transfusion. The parents have reported such a change in the child in just five days! There is more to this stem cell business than meets the eye and I hope that more research can be done to see if it would help children like Patrick too. We can only hope. Needless to say, it made me cry to see another kiddie doing so well. Soppy old sod that I am. Here's the link http://www.msnbc. msn.com/id/ 23572206/ then click on launch and it should open a player in a new window on your PC.

We will be putting a bigger update on how Patrick is very soon but suffice it to say that the anti biotics he has been given this week seem to be doing the job. Still getting some disruption at night but generally his full medication cocktail is making him cope better for now at least. Gem will no doubt be posting on here later so until then, best wishes from Martin et al xx

Poorly Bunny

2008-03-07T08:08:00.000-08:00

Hiya, We're all a bit stressed out at the moment. We're still not able to take Patrick anywhere because of the chicken pox risk. We're still not sure if the boys are gonna get chicken pox but they have both been pretty poorly over the last few days. Isaac woke up with a temperature on Wednesday morning and gradually got worse as the day went on until he threw up his dinner in the evening then Thursday morning was even worse and he couldn't even keep down a cup of water. He got better over the course of the day though and today he's been fine, his usual hyper self. Patrick bless him is having a really bad time of it as from yesterday evening he's had a high temperature and we were up all night with him. He has had terrible chills and woke up a few times really shivvering with cold, although his temperature was 104! He slept a bit but we've not really been able to get his temperature down at all. I took him to see his GP this afternoon and after close inspection we're not convinced he is in the first stages of chicken pox, but he is very chesty and his ears are raging so that is more likely the cause of his fever. He has a few spots here and there that come and go and look more like heat spots than chicken pox. He's been prescribed a course of anti-biotics that will hopefully take the edge off any chest or ear infections and we'll just have to keep our fingers crossed he gets over this quickly. His seizures have been affected, his jerks are a lot stronger than usual so we are monitoring them closely.
As you can imagine we are pretty shattered and the threat of chicken pox has really been quite hard to deal with. I know it's an everyday childhood virus that wouldn't normally be a cause for concern but as we really don't know how anything like that could affect Patrick's epilepsy, waiting for it to hit is a nightmare. It's been 16 days since the boys came into contact with it but we've been told it could take up to 21 days to come to the surface so we've got a few more anxious days left. We had hoped we could get some anti-bodies for Patrick but I found out from the GP that they need to be given within 3 days of first contact with the pox to have any effect so it's too late.

Anyway, enough of that, there's not really anything else to report so I'll leave it there and keep you updated if anything changes.

Lots of Love, Gemma xxx

A quiet week...

2008-03-02T12:34:00.000-08:00

Hiya, had a quiet week this week but unfortunately not out of choice. My nephews Owen and Aiden have got Chicken pox and we spent the day with them during half term without realising they had it. As they were only just showing symptoms while we were there they would have been contagious and so there is a strong chance that Isaac and Patrick are now carrying the virus. So with that knowledge I have not been able to take Patrick to Julia's House or to the Hospital for his appointment and so we've had a really quiet week. It's a bit frustrating as we're having to cancel everything 'just in case' and there's no certainty that our boys will even have it but obviously as Patrick comes into close contact with very vulnerable children it's not worth the risk to them. I did manage to have a phone consultation with Patrick's neurologist, not much to report from that, we're still waiting on 4 test results but they wont be back for ages as the blood samples haven't even been processed for them yet. Still no date for his MRI so we're not going to change any meds or anything until he's had that, then we'll start taking him off the Vigabatrin. I told Fiona about the chance of Patrick having chicken pox and she was going to try and talk to Poole Hospital about getting him some anti-bodies that will minimise the symptoms, we know that Patrick's seizures get worse when he has a fever so I'm dreading the pox really, we have to see if he meets the criteria for getting the anti-bodies as it's usually only given to children who have a know immune deficiency, which Patrick doesn't really, fingers crossed they give it anyway.
It was Martin's birthday on Wednesday so that was a nice day, we went out for lunch and then went out for dinner Saturday night to celebrate. We had a lovely meal and as it's been over a year since we went out just the two of us, it was a real treat. Unfortunately as Patrick is still waking up at 2:30 every morning we are so sleep deprived that we were home by 9pm! We've decided that next time it would probably be better to go out for lunch as we might still be awake enough to make the most of it!
Some of Patrick's seizures have been a little more intense over the last few days so we've upped his night time dose of Clobazam. He's a bit more spaced out as a result but usually that passes after a few days.

Anyway, it's been a lovely Mothers dayand I had some lovely presents from my gorgeous boys.
It looks likely to be another quiet week as we wait for the spots to immurge, I'll let you know how we get on.

Happy 1st Birthday Patrick!!

2008-02-20T00:05:00.001-08:00

Hiya, just a really quick one to say a big thank you for all the lovelly cards and gifts for Patrick's birthday, we had a great day on the farm. Thankfully Patrick had a good day with only 2-3 fits which was great (I wonder if they knew?). He seemed to like all his new toys and deffinately seems to have a taste for birthday cake!

Busy, Busy, Busy

2008-02-17T00:42:00.000-08:00

Hiya, been a hectic couple of weeks with appointments all over the place.
We took Patrick to see a rep' over at the Child Development Centre to have a look at a new 'early activity system' from a company called Squiggle. It's pretty hard to explain but it's basically a play mat that has additional support, it's easier to post the link than to try and describe it! http://www.leckey.com/template.asp?parent=96&pid=293 We also looked at a couple of standing frames for him but neither were a perfect fit for him, apparently there's hundreds of different ones on the market to try so it might be a while until he gets one of those.
We then had to take him to the Wheelchair clinic to see a couple of 'special needs buggies'. Patrick has been fitted for a special buggy called a Phoenix, it's amazing what they can do these days as at first glance you wouldn't know that the pushchair was any different to a normal one but it's full of extra support and it will be fantastic for Patrick. At the moment he doesn't have proper support in his pushchair and has to stay reclined or he'd just 'flop' forward. In the Phoenix however it gives him the support to sit upright and he'll have the freedom to move his arms and legs properly. One thing we did want is for the buggy to be rear facing so we can see him properly, as we need to be able monitor his fits. Patrick's fits can be hard to spot so if he was facing away from us we'd miss them. Anyway, the company that makes the buggy are actually going to custom build it for Patrick rearward facing with a bit of a tilt so we can recline him if he's sleeping. We should get it in about 6 weeks. Thank goodness for NHS as these pushchairs cost thousands, we're very lucky to get such a great one, it's so new on the market it's not even on the internet so I can't post a link!

As you may have seen from the e-mail thats been sent round with some photo's, Patrick had his first pre-school session at Julia's House. This went really well and Patrick was really relaxed there and let his carer Pam look after him without a fuss. He was able to spend time in the sensory room which he seemed to love and he even did a painting! We stayed with him for his first session but next time we go we might slip out for a coffee which would be nice.

I finished the 6 week Parents course I was doing. I really enjoyed escaping once a week to attend the sessions and will miss it, it was a great group of parents, all with different experiences but we all got on well and had quite a laugh, hopefully we'll keep in touch as it is nice to talk to other Mums who really understand.

Thursday was hectic as we had a Portage session with a Speach and Language therapist at 9am followed by his development review at Christchurch hospital at 10:30. The speach and language therapist was quite pleased with him. She was able to hear him making a bit of noise before he fell asleep and she seemed to agree with what we've been saying, he's deffinately making progress as he is making a good variety of sounds, but he seems to be about 4 months behind. He has a lot of work to do but she was impressed with him really, he has just learnt how to do pat-a-cake, you have to bring his arms forward for him but he can just about clap his hands together. During the session we did pat-a-cake and when we stopped he gave us a deffinate look that said 'again' and kept clapping which was fantastic, he can't vocalise what he wants but if you look carefully you can see he's trying to communicate in his own way. We've been given lots of homework and ideas to try with Patrick, we're going to look at using sign language with him as well.

Patrick's development review went quite well although we wont get their report for a few weeks. Patrick was seen by his paediatrition and physio who both had a good look at him and could see a big difference from 8 months ago which is great. There is still an awful lot that's not right but the last time they assessed him properly he litterally couldn't do anything, he just layed on the floor and couldn't even see them, now he's rolling over, laughing, looking around the room and is responsive, all things that we didn't know would be possible for him.

I managed to speak to Fiona, Patrick's neurologist on Monday. We have been given a clinic appoinment on 28th Feb and she is putting in a request for another MRI. They are still waiting on some results but have had some back that are fine.

For some reason Patricks in-built alarm clock is playing up at the moment and he has been waking up at 3:30am! Nothing seems to settle him back to sleep, he's just wide awake and noisy from 3:30 onwards so as you can imagine, Martin and I are shattered. It's half term now so we don't have any medical appointments for a change. We're planning a nice day out on the farm for Patrick's birthday so hopefully the weather will stay nice.

Anyway, I realise that this post is dragging on now, I blame my tiredness for my ramblings! Hope everyone is well, I'll update with some birthday pics' later in the week.

Lots of Love, Gemma xxx

Julia's House

2008-02-05T12:06:00.000-08:00

Hiya, Just wanted to update as we had a such fab day yesterday. I've mentioned before about a hospice called Julia's House that are going to be giving some respite care at home for Patrick. Well, I took Patrick over to the hospice itself for the first time yesterday as they held a parent and toddler group. Mum came with us and I have to say what a wonderful place Julia's House is and what a positive experience it was. I was quite nervous about going there if I'm honest as the image I had in my head is one of a clinical environment full of very poorly children and sad parents. I couldn't have been more wrong. As soon as we walked in we were greated by countless smiley faces and we instantly felt as ease. We were given a tour of the hospice that has amazing decor, all based on a beach theme and not a bit clinical or hospital like. The toddler group itself was great fun with about 6 children all with various types of disabilities, it was so nice to be able to take Patrick to a group with other children without him sticking out like a sore thumb, he blended in nicely. Patrick actually found the whole experience pretty exhausting and promptly fell asleep leaving me and Mum on our own to join in with the group sing-song, tamborines in hand, with so many enthusiastic carers around it was easy to go along with it and we sang 'Old McDonald and Row the boat' with gusto! When Patrick finally woke up we took him into the play room where they had lots of painting things out. Patrick was a bit quiet in his new surroundings so just sat and played with some sensory toys while we were able pick the brains of the staff and get some ideas. All the staff were so fantastic and new exactly how to handle all the children, the place has such an amazing positive energy that deffinately rubs off on you as you leave.

I've actually booked Patrick in for a pre-school session next Tuesday, I was that impressed. We can basically leave him in the very capable hands of Pam, his carer and she will look after him and do activities and play with him, they have a well equiped sensory room even take the children out for walks in good weather. Martin and I will stay with him for the first few sessions but they have a big conservatory overlooking their sensory garden that's set aside for parents to 'chill' in while the children are kept busy.

Patrick's carer Pam came out to see us at home today for a couple of hours and she seems great, really easy going and got stuck in with feeding Patrick and had a good cuddle which he didn't seem to mind at all. I've been told that Pam is a bit of an expert when it comes to children with epilepsy so if we do finally pluck up the courage to leave him with her I'm sure he'll be in good hands.

Anyway, that was it really, I have rung the hospital today and am waiting for a call back so will update if and when we get any more news. I have posted a couple of links on the blog, one is to the Julia's House website which has a virtual tour on it so you can see what I'm going on about, there is also a link to a site that sells sensory toys (Rompa) incase anyone is looking for ideas for Patrick's birthday. There are a couple of larger pieces of play equipment that I would like to get for Patrick so if anyone would just like to send him some pennies for his birthday that would be fine.

I have attached a photo of Patrick lying on his front demonstrating his strong neck, and how he can lift his head unaided (a very big deal for him).

Take care, love you lots, Gemma xx

Nothing to report

2008-02-03T07:52:00.000-08:00

Hiya, sorry, no news to report just thought I'd better touch base.

Patrick's seizures or 'jerks' are still fairly stable, he's still having around 6 a day but he's tolerating them well, they're not too strong and they don't seem to be on the increase at the moment. We've had to put him on anti-biotics to try and help clear his chest. He's had a really bad chest for a few weeks now and at worst his caughing fits make him vomit so it's not nice for him. We've still not heard from the hospital about any more test results or when his next scan will be, I'm gonna try and get it touch with someone this week and find out when we're likely to get an appointment. I had hoped to have some news before his first birthday but that is looking unlikely.

The last couple of weeks have been hectic. We've had people coming and going every day which is a good thing really as we now have a social worker in place to help us who has been gathering information, also a carer called Pam from Julia's House Hospice is now on board so she'll be spending a few hours with us a couple of times over the next few weeks to get to know Patrick properly so she can then look after him at home for us if we want to go out and do anything.

Patrick had another Portage session this week as well which was encouraging. The good thing about Portage is that they focus on the positives and record what Patrick can do, not what he can't. We went through his record sheets and looked back to when he started last October and he has actually made a lot of progress in most areas. Sometimes the progress might be so small that it goes un-noticed until you sit down and go over these forms that ask simple things like 'can Patrick hold eye contact for 5 seconds or more?' Back in October the answer was a definate 'no' but now he has really good eye contact. Also, back in October he couldn't move off of his back, even with a helping hand, now he is always rolling over onto his side and can make almost make it right over, and before if you laid him on his front he couldn't move, he'd stay face down and would suffocate if you weren't there to lift his head, now laid on his front he can lift his head up and move it from side to side. He doesn't really like it on his front but it's part of his physio reigeme so he has to put up with it.

We're so proud of him for all he's achieved considering the year he's had, it's his 1st birthday on the 19th February which is unbelievable, it's been such a long year.

Anyway, as always I've got carried away, this was only supposed to be a quick one!

Hope everyone is doing ok, I would like to send best wishes to my friend Karen who has a son Luke with a similar condition to Patrick. Unfortunatley Luke has not been so good and has been in hospital since boxing day while the Dr's have struggled to get his seizures under control. They just took him home today though so hopefully things will improve quickly for them. Love to you all xxx

Play time with Patrick

2008-01-23T03:10:00.000-08:00

Another clip just to show you how happy and smiley Patrick can be! xx

All is well...

2008-01-21T10:36:00.000-08:00

Hiya, Just a quick note to let you know that things are still fairly calm and that Patrick is still doing really well. He is still having these 'jerks' about 2-3 episodes a day but they are not distressing for him or harmful.

His development is still coming along nicely and he is always rolling around the floor now, he can now roll all the way from his back onto his front which is amazing. We just need to work on building up his arm muscles as they are still too weak for him to hold his weight. He is extremely vocal and getting louder and louder, he is currently laying on the floor screaming at the top of his voice, he's not unhappy, far from it, he's just making sure we know he's here.

Patrick's physio session went well last week and both the Physio therapist and Occupational therapist could see a definite improvement since before Xmas. They managed to get him strapped into a 'stander' which was a strange contraption that actually takes all his weight and holds him upright in a standing position. This was pretty strange as I'm only used to seeing Patrick laying down or sitting, for 11 months old he's actually really tall. Hopefully after he's had a few more practises in the stander at his physio sessions we might be able to have one at home for him.

We had a great week last week, we went for a meal out for my birthday. It was the first time we'd all been out as a family (my Mum and Step dad Ian came too). We took Patrick's hi-lo chair with us so he could join us at the table (he can't use a standard high chair) and had a really nice time.

On Friday night we actually had my Mum babysit and Martin and I went out for dinner with Martin's brother John and his wife Lesley. This was a milestone for us as we've never left Patrick before but as he is the most stable he's been and my Mum has been so involved with Patrick anyway we were able to relax and have a nice evening. (in fact the last time we went out without the kids was my birthday last year!)

Isaac's schedule has got a lot more hectic as we've booked him a course of swimming lessons and he's joined the Bransgore Under 6 football team so he's pleased about that.

That's about it for now really I'm gonna post a load of photo's that I've taken on my new camera, and hopefully some video of Patrick if I can get it to work.

Take Care, Hope every one is well.

ps. I would just like to point out that although it may look like I am bouncing his face on the floor, it is in fact a padded mat and he isn't actually touching it very much. No Patricks were hurt during the making of this video. Please also excuse the TV volume in the background. Martin (Director - available for Weddings, Bar Mitzvahs and happy slappings)

Progress...

2008-01-13T00:10:00.000-08:00

Hiya,

Just thought I'd touch base and let you know how things are. Still no more news regarding test results, we'll let you know as soon as we know anything.

The last couple of weeks have been hectic but fairly positive. We have been busy with appointments with various agencies. Social services have responded to our complaint and apologised for their mistakes and fully accepted that Patrick does meet their criteria so that's good. We're just waiting to be allocated a social worker who can start planning what help we can receive.
We had a visit from one of Patrick's Occupational Therapist's who has fitted him out for his very own special seating system. It will replace the hi-lo chair that he has been using and it's very smart.

Patrick has had a great week in terms of his development. He has been really alert over the past few days and is more smiley than usual. Usually it's really difficult to get a smile from him and it takes a lot of hands on stimulation like tickling to get a reaction but for the last day or so he's been smiling at everything. I only have to look at him and he gives me one of his gorgeous cheeky grins and he's also started smiling at certain toys which is brilliant. He's making different sounds too and has managed a 'Ma' sound which is great. It also seems he is showing signs of trying to communicate, in particular when he's lost his dummy, he'll 'click' his tongue to show he wants it which is just brilliant.
Patrick actually managed to stay awake for a whole Portage session last week which was an achievement in itself! He's not too keen on anything like that, he doesn't really like other people trying to work with him and will only participate if I'm in his line of sight, but he did really well and was looking at himself in the mirror which sounds like an easy task but for Patrick it's good progress as before he's not even looked at the mirror, let alone been able to look at his reflection. I've also caught him watching the TV a couple of times as well, again, this is progress as he's never shown any interest before and even when I've sat him right in front to see if he'll watch he'd just look anywhere but at the screen.

So, at the moment we're encouraged, he's starting off the year well so let's hope these small signs of progress continue. Of course for Patrick though it can never be all good news, as unfortunately he's really 'jerky' at the moment. I'm not sure which medication is not quite right but he had a few days when he was only having one or two very mild jerks and now all of a sudden that's increased and he seems to have a bad hour when he'll have up to 6 lots of jerks. This happens a few times a day and again at night so we're keeping a close eye on that and will speak to Fiona next week.
Night times are a bit of a nightmare at the moment as Patrick seems to have developed an in-built alarm clock that wakes him up at 3:30 every night. He's quite happy to just lie there in his bed wide awake and singing to himself and grinning at me when I'm try to convince him he needs to sleep. This can go on for 2 hours until he does fall asleep again only to re-awake at 7am. So as you can imagine, we're pretty knackered!

I've started my six week 'supportive parenting course'. The first lesson went really well once I got past the introductions. It seems that I'm able to talk about Patrick to anyone in a matter of fact way without feeling upset until I'm put on the spot. When it was my turn to introduce myself and tell the others why I was there I fell to pieces and found it really difficult to even say Patrick's name let alone talk about his condition. I just burst into tears which was really quite embarrassing but also pretty normal I suppose, the others were great and once I was able to explain our situation they were all understanding which helped. Anyway, the course covers things like, dealing with fatigue and stress, time management and learning to deal with emotions which, judging by my outburst, I could really do with!

So, that's where we are at the moment, I'm feeling quite positive and am looking forward to a week of celebrations as it's my nephew Owen's birthday on Tuesday, followed by mine on Wednesday and my brother Alec's the day after!

Hope everyone is well and enjoying the new year.
Lots of Love, Gemma

P.S I will try and get some good video of Patrick being smiley and happy to post on here soon.

Still no answers...

2008-01-02T09:36:00.000-08:00

Hiya,

Just a quick one to say we had an appointment with Fiona, Patrick's neurologist today to get the results of the extensive load of blood tests etc

There are still a couple of results outstanding but so far everything has come back normal.

I suppose this is good news as they are able to rule a lot out but it would be nice to know what we're dealing with.

So, it's another waiting game now. They're waiting on a couple of the genetic test results to come back which could take another month. By the time they come back it will be time to do another MRI scan and then we'll see if there's been any more loss of tissue.

If these other tests come back normal and they draw a blank on everything then it will be time to speak to Great Ormond Street. Hopefully we'd be able to just send his notes up rather than have to go up ourselves as I think the disruption that would cause would be a nightmare. Anyway, we'll cross that bridge if and when we have to.

In general though Fiona was really pleased with Patrick. He looks well and was fairly alert when she saw him so she was able to see that he responds well to people and behaves appropriately, rubbing his eyes when he's tired, moaning if you take his dummy away, simple things like that are all positive things. At the moment we can safely say that he's not losing any skills, he's not necessarily progressing much either but Fiona repeated what she'd said when we first got the scan results, she can't believe from looking at him that the results were so bad, it just doesn't make sense.

Anyway, I guess time will tell.

For now we're back to carrying on as normal, with that said I have a hungry Patrick to feed.

Lots of Love

xxxxxx

Happy New Year 2008 xxx

2008-01-01T01:23:00.000-08:00

Well, 2008 is here and by the look of my diary already I just know it's gonna be a hectic one!

We had a really nice family Christmas, lots of love and laughter all the way. Patrick (bless him) was pretty overwhelmed by it all and was very quiet for a few days but as things have settled down a bit, he's coming back to being his normal, happy, noisy self. His seizures increased in intensity over xmas and boxing day but after speaking to Fiona and putting him back on the carbemazepine they have settled again and he is only having one or two a day.

Sorry, I'm just gonna interrupt myself to let you know what is going on around me. Patrick is asleep on my lap and Isaac is getting dressed but he has only got as far as his new 'big boy boxer shorts'. He is now trying to get my attention to show me his 'special super punching moves'. Isaac thinks that if he wears his boxers it means he is a 'boxer' and must practise his technique. I just love the way his 5yr old brain works!

I would just like to say a big thank you to all those who gave us so many lovely gifts for Christmas and Isaac's birthday. I had the good intentions of sending out thank you cards but realistically I know that it's doubtful I'll find the time but you know that we are very grateful for everything. Isaac got everything on his wish list and is working his way through all his new toys. Patrick is taking his time, too many new things freak him out a bit so we introduce new things slowly.

As I said at the start, my diary is pretty full for the next few weeks, we're off to Southampton to get Patrick's test results tomorrow, Thursday we have social services coming round to discuss how they can help us (after they refused us help and we had to put a formal complaint in). Then next week we have visits from Homestart and Portage and Patrick is getting fitted for a new chair. I am off to college next Wednesday to start a 6 week course to learn all about parenting a child with disabilities so that should be helpful. Apparently they teach you ways to cope with stress and sleep deprivation so that will be useful.

So that is how 2008 will be for us, non stop from the start. It felt strange sitting up waiting for the new year to kick in, I felt quite sad as I sat watching Patrick sleeping, he's so blissfully unaware of what lies in store. I felt a bit jealous watching people on TV enjoying themselves wishing each other a happy new year, full of good cheer and high expectations for the year ahead, while we're sat waiting for the unknown, unable to make plans and unsure ourselves of what lies ahead. We know we're gonna have some tough times ahead and it's all out of our control. I think I was asleep by about 00:05 and woke up this morning feeling much better.

2008 bring it on! We can deal with anything, bad or good, with love and laughter in our hearts we'll be just fine. Yes we will have days ahead that will be difficult but we'll pack a lot of smiles into the rest and I'm sure by this time next year we'll have plenty of fond memories to look back on.

So, happy new year to all of you, I hope that 2008 brings you many happy days.

Take care, Love Gemma xxxx

Christmas Wishes xxx

2007-12-23T11:20:00.001-08:00

Hiya,

It has been a strange and eventful year for us as you all know. I can't quite believe how quickly this year has flown by. When you look back to the beginning of this blog and see all that has happened, it's quite unbelievable how we've packed it all in. We've certainly had plenty of tough times but plenty of smiles along the way.

I would like to take this opportunity to say a big thank you to all those involved in any way with Patrick's care. Without the support from special people like Fiona (Patrick's Neurologist) and Janet (our support worker) and the many others that help us along the way, we really wouldn't be able to cope.

I would also like to give a massive thank you to my Mum, Jackie who has been a huge support to us all from the start. Mum, I love you loads, thanks a million.

2007 has been a crazy year and 2008 looks set to be just as busy, who knows what lies ahead. All we can say is that we will continue to stay strong and keep smiling no matter what.

As always we will continue to up date you as and when we have any news, we get Patrick's latest blood results on 3rd January so look out for info soon after. Today Patrick is stable, his seizures aren't too bad although it looks like he is having 'facial' seizures again since we got him off the carbemazepine. We will speak to Fiona when we can and try and get these under control again.

Isaac had a fab 5th birthday yesterday, he has been an absolute star throughout the year and is really looking forward to Christmas.

So, with all that said, have a fabulous Christmas and a wonderful new year!

Welcome to Holland

2007-12-19T23:56:00.000-08:00

Hiya,

Found this on the internet and thought it summed it all up pretty well...

"Welcome to Holland"
By Emily Perl Kingsley, 1987. All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Poorly Boys

2007-12-10T08:45:00.000-08:00

Hiya,

I am fed up this week! Both Patrick and Isaac have been really poorly for the last couple of weeks. Isaac has missed loads of school, first with a tummy bug and now he has a stinking cold with a killer cough that at it's worst makes him vomit, poor thing.
Patrick is suffering with the same illness, he's had a tummy bug for over a week now and has also got a really bad cold and he also has some kind of eye infection as well! He's really feeling sorry for himself as his seizures have been quite bad again over the last week. I guess as he has diarrhea he's not able to absorb his meds properly. We're a bit worried really but have been in touch with someone at Southampton who said just to keep a close eye on him and use the medazalam if we need to (emergency anti-convulsant). If his tummy bug doesn't clear up soon we may have to consider taking him into hospital so they can give him his meds another way.
We're hoping to send Isaac back in to school tomorrow as he has his nativity on Thursday and he's missed loads of rehearsals already. He also has his birthday party to look forward to on Saturday so hopefully he'll be feeling much better by then.

Anyway, we're generally enjoying the festive season and have all our decs up and got the Christmas shopping sorted.
Hope everyone else is fine and not struck down with the lurgy like we are!

Merry Christmas, Lots of Love, Gemma xxx

2007-12-01T12:12:00.000-08:00

Here is a special clip of our clever little boy feeding himself for the very first time. This is a major achievement for him as he usually cannot hold anything or make coordinated movements so we were both in tears and very proud. He's a little bit shaky and unfortunately took too big a bite and threw up but we can work on portion control another day!

Patrick's Tests

2007-11-30T05:20:00.000-08:00

We spent the day in Southampton hospital yesterday so Patrick could have his special eye tests and so that they could take lots of blood and urine samples from him (poor thing).
We are pleased to be able to report that his eyes are fine. The tests they performed were very complex, they had to attach some probes to Patrick's head and sit him in front of a TV screen showing black and white squares that he had to focus on. Unbelievably Patrick was so tired that he slept through the whole test and the poor assistant had to hold Patrick's eye lids open! It's amazing what technology they have as they were able to tell exactly how Patrick's brain processes what his eyes can see and thankfully he can see really well. They also looked closely at his retina which was more important for diagnosing his condition. They did this by attaching probes just under his eyes and then holding flashing lights in front of him in various colours and speeds. The Dr was really pleased with him and said that she could see nothing wrong with his eyes at all and that they could now rule out several nasty degenerative conditions including Battens disease. The flashing light test also proved that his epilepsy isn't triggered by flashing lights which is handy to know.

After his eye tests we had a consultation with Fiona who explained that they are now going to send off his blood samples and urine to be tested for various other conditions. I did ask what exactly they were looking for and Fiona proceeded to read out a very long list of Metabolic, Genetic and other disorders and left me none the wiser! What I did understand is that the majority of these tests have been done before and had negative results so they are just double checking and there are several things they are testing for that his symptoms don't quite match with so are unlikely to come back positive. There are a group of Genetic tests that haven't been done before so they could show something. We have to wait until the 20th December for the results so we'll let you know if they find anything.

As far as Patrick's seizures go, they're still pretty stable at the moment. He has had a rotten cold and a temperature over the last few days so he's had a couple of big ones but in general he's much better than before and is only having the odd jerk, more of a muscle spasm than a full seizure.

As always I'll let you know if anything changes over the next few weeks, hope everyone is well and looking forward to Christmas as we are.

Take Care, Love Gemma xxx

Meds Update

2007-11-21T00:05:00.000-08:00

Hiya, Sorry it's taken a while to update, I've been waiting to see if his new meds work so I had some definite news to report.

So, I took Patrick to see his neuro a week ago last Monday. When we arrived for the appointment he was fast asleep so I deliberately woke him up in the hope that he would have a seizure (sounds awful and I felt very guilty but it is always better if his neuro can see him fitting as it makes it easier to prescribe the right drugs). Thankfully he did have one of his bad seizures so she was able to get a good look at him close up and see that we weren't over exaggerating the severity. Anyway, Fiona has now introduced a new medication called Clobazam into the mix, he started off last week on a very low dose and it will be gradually increased over the next few weeks. I have to say though that within a few days on this medication his seizures have got better. Instead of having bad ones at any time for the past 4 days he has just had one during the day and one at night so that is a massive improvement. I don't want to tempt fate but yesterday and last night he didn't have any 'proper' seizures at all, just a few light jerks. If he carries on improving as the dose is increased we may get him seizure free which would be fantastic as he hasn't gone a full day without fitting for 6 months!
Not having seizures has a massive effect on his personality, yesterday he was in a great mood all day and when he's happy he's noisy! He is still limited in his communication but when he's happy he squeals with excitement at the top of his voice! He'll lie on his play mat kicking his legs and waving his arms and just makes noise. He does this at 6 o'clock in the morning when he wakes up but you can't feel grumpy with him, he sounds so happy to be awake you just can't help but smile, he's the best alarm clock I've ever had! There's no volume control with Patrick at all, he just does loud, you can't hush him as he doesn't understand that so yesterday in particular our house was full of noisy happy sounds, it was great!

Anyway, I've got to go take Isaac to school and start the busy day, will update more at the end of this week. xxxx

Seizures

2007-11-11T01:18:00.000-08:00

Hiya,

Patricks seizures have changed again and unfortunately seem to be going back to the Spasm type seizures that are quite distressing for him. We have spoken to his Neurologist and are taking him in to Southampton tomorrow (Monday) so she can have a look at him and sort his meds out. We have been weaning off a couple of meds over the last month so this is probably down to that, we may end up having to stay in for a couple of days while they try and get on top of his seizures again, we'll let you know how we get on tomorrow.

In the meantime here's some more pictures of our baby boy in his new chair! We have been leant this new equipment temporarily until social services can issue him with his own more permanent one. This one is a little too small for him really but it's great as it gives him full support and helps him sit up properly which will hopefully help towards strengthening his muscles. He also has a new bath support which is a great help as bathing him was getting very difficult as he is so big and heavy.

Test Dates

2007-11-07T11:22:00.000-08:00

Hiya, just to let you know that we have the date for Patricks eye tests and blood tests. We're taking him to Southampton on 29th November so we'll not have any new news until the end of the month. Patrick is still amazing us every day with his strength, he actually managed to hold his bottle the other day which was a great achievement. His seizures aren't too bad at the moment although they seem to be creeping up in strength and number again so were keeping a close eye (nothing new there!).

Thank you for all your support, we have received several kind messages that really mean a lot. We are coping quite well really under the circumstances, we are still able to stay positive and are carrying on as normal. We're not in denial, we have fully accepted what may lie ahead but we're taking each day as it comes and today Patrick is doing OK so we're OK, if that makes sence.

For those who gave Patrick money for his christening, I have bought some fun things for him. He now has a new musical vibrating rocking chair, a giant multi coloured bean bag to nap on and a soft foam play mat so thank you very much. Our lounge now looks like an indoor play centre but who cares?!

Anyway, I'll leave it there as Patrick is sitting on my lap waiting for the next chocolate button, he's not impressed at the long wait between each one as Mummy is distracted!

Christening Pictures

2007-11-06T03:36:00.000-08:00

Mummy, Daddy and me

My parents and Godparents with my brother Isaac and I. (My biggest brothers were camera-shy!)

Mummy will be adding more photo's later

Some Sad News

2007-10-29T03:33:00.001-07:00

I'm really sorry to say that this blog entry is not going to be a positive one so for those who might be reading this while at work, you may want to save it 'til later.

As you know Patrick had his MRI scan on the 18th October. We have now received the results and have a much clearer idea of Patrick's condition.

You may remember back when this all started that Patrick had an MRI done at Poole hospital. That scan showed that everything was normal apart from there seemed to be a little less white matter than there should have been for his age (White matter coats the brain and protects the nerve fibres). At the time they said that this news wasn't that significant as he was so young and the difference wasn't really that much to worry about. They have now been able to compare his latest MRI with the one they took back then and unfortunately the results aren't good.
Not only is there less white matter than there should be but it seems that between the 10 week MRI and now, he has actually lost some white matter. This indicates that Patrick has a degenerative brain condition. What this means is that they think that over time Patrick will lose more white matter and gradually lose motor skills and his development will basically go backwards. Patrick has to go back to Southampton for further tests over the next week to confirm all this, they need to look at his vision processing (how his brain interprets what he sees) and also take blood and urine samples. They are confident that they will be able to properly diagnose his condition and then hopefully we will have more information about what to expect. If they don't get all the answers at Southampton he may end up being referred to Great Ormond Street. We have been told already though that whatever the diagnosis, it is highly unlikely that there will be a cure or any treatment that will stop the condition, and therefore this condition would be terminal.

As you can imagine we are totally devastated by this news and were really shocked. Patrick has been developing really well recently and seems to be gaining skills - not losing them, even Fiona his neurologist said that she was really surprised at the results as she has seen him several times over the last month and can also see that he is getting stronger and more responsive.
Fiona did measure his head while we were there on Friday and unfortunately his head hasn't grown much at all over the last 4 months, this is also an indication that his brain isn't developing and growing as normal.
We can only hope at this stage that he'll prove them all wrong and somehow he'll be fine.
The weeks ahead are going to be difficult as we find out more and we'll of course keep you all as updated as we can.

For now we can only take each day as it comes and continue to try and work at bringing on his development with lots of physio and love. We are trying to carry on as normal and be as positive as we can be. This news changes nothing and everything all at once, it changes nothing in the way that we will care for Patrick and stay strong as a family but it changes everything in terms of the services we will now get access to and the respite care we will be able to use. We are obviously concerned about how this news will effect our other children, in particular Isaac who we will try and protect from the worst as much as possible but also Ashley and Billy as they are old enough to fully understand what may lie ahead.

For those of you who joined us for Patrick's christening, thank you for helping to make it such a special day. I hope you can understand why we didn't tell everyone the news until now, we didn't want Patrick's day to be a sad occasion. We are more determined now than ever to make sure that whatever happens in the future, we make lots of happy memories along the way and Sunday was one special day that meant a lot to all of us.

As you read this and digest the news, especially if you have children yourself, take the time to reflect about how precious all our children are, every hug, every smile and every giggle is a magical moment to cherish. It is so easy to get complacent and take the smallest things for granted. One thing we have learnt is that life is far too short and we all need to make that little bit more of an effort to spend time with family and friends.

Keep your eye on the blog, we will be updating it soon. xxxxx

Quick Update

2007-10-02T07:31:00.000-07:00

Just a quick one to let you know where we are at the moment.

Had an appointment at the beginning of last week with Patrick's neurologist at Southampton. We took some video footage of Patrick fitting to show her as his fits have changed slightly and it was her opinion that Patrick does not have Infantile Spasms but is in fact having 'Complex Partial Seizures'. The main difference in the physical appearance of his fits is that there's a definite build up, first his arms and hands start fiddling (looks like he's playing the harp) and his breathing gets a bit deeper. Then he will stretch his arms and legs out and hold it for a second then he repeats this for about 5 mins.

I guess if Fiona (neuro) is right then it could be good news for Patrick as Complex Partial Seizures are far more common and easier to control. We have been given a new medication called Carbemazepine, it does make him sleepy so we're weaning him on to it slowly and wont really see if it's working for about another week. He is still taking the others but we'll begin the process of reducing those soon. We're a bit stressed out with it all at the moment as this new medication sounds great but unfortunately it does come with the risk of making him worse. If his neuro hasn't got it right and he is in fact having Infantile Spasms, this particular med could actually work against him and make his seizures worse. We are closely monitoring him and timing his seizures at the moment until we are confident that isn't the case. He is at the moment still having around 12 fits a day including 2 during the night so it is still a lot to deal with.

Development wise he is still doing well, still enjoying being thrown about and he does seem to be getting a bit stronger in his legs. He has no interest in holding anything at the moment and we're still no closer to getting that head control but he's happy, which is good enough for us. Patrick's physio and occupational therapists are working hard with him and have been giving us a lot of support, with that support comes equipment and so far Patrick has a special chair to sit in and 'corner' table to use all to encourage his head control. This is great but anyone who has visited our house will know, we are a little over crowded to say the least so new equipment is fab but Patrick is taking over the house! There is talk of Patrick needing a special bath support as bathing him is becoming increasingly difficult as he's so big but floppy (weighs 20lb now!) that will be a major problem is our house as these supports take up half the bath and are fitted in, so he'll be alright but the rest of us will have to make do with a cold hose down in the garden I think!

I took Patrick along to an under 1's club last week. It's the first time I've taken him to anything like that and if I'm honest I found it really hard. Patrick was the oldest baby there with average age being 3 months. It was shocking to actually lay him side by side with these tiny babies and watch them rolling around trying to escape when all Patrick can do is lie there and smile. He does win the prize every time for most infectious laugh though and is the most good looking baby so what he lacks in ability he more than makes up for in cuteness!

Anyway, I'm gonna leave it there, it was supposed to be a short entry as we have a really hectic week this week. Got Portage starting tomorrow (a kind of development through play session), Physio and OT on Thursday and on Friday I am meeting a woman who has an 11 yr old disabled daughter with epilepsy so that should be interesting. I am also in touch with a woman from Southampton who's 2yr old son has a very similar condition to Patrick and I will be hopefully going to visit them soon so that may give me a better idea about what the future may hold.

Everyone else is fine, Isaac's loving school and we were proud parents last week at his Harvest festival assembly that he had to sing in, bless.

Hope everyone is ok, love to all, Gemma xx

A Good Week!

2007-09-18T10:44:00.000-07:00

Just a quick one to let you all know what a great week Patrick is having. He isn't seizure free but developmentally he is doing really well. Up until a couple of weeks ago it was very rare to get any show of emotion from Patrick at all, he wasn't focusing very well and was generally not too good. At the moment all this has changed and he has found his laugh! He has a constant smile on his face and laughs at everything, even his own fits make him smile! As he is getting bigger, I have gained a lot more confidence with him and have started treating him a bit more like a 7 month old baby and have been playing rough and tumble (well, as he can't move himself I have been throwing him about!) and we've discovered he responds really well to being over stimulated, the rougher the better, this will really help with his physio. He has a wicked laugh and is really ticklish. He also responds really well to loud noises, I have been buying several different toys, bells and baby cymbals and he loves it.
He still can't hold his head up well but it is improving, his legs are like jelly with little or no control and his left arm is pretty floppy but we're working on it.

He has been on a slow increase of Topiromate and has been weaning off the steroids and although he is still fitting around 12 times a day, he is coping with that and so it seems to be a happy medium. The night times are a little worse, he tends to wake up around 2am then again around 5am with a fit that can sometimes last 5mins or more, we have been given some Midazelam for those which stops it instantly but thankfully haven't had to use it too much (it can slow down the heart and breathing rate so isn't something he can take often). In total with his fits then settling down again me and Martin are both losing a good 2 hrs sleep every night but as Patrick still can't cry, he just gurgles and chuckles to himself we can't be stressed with him. We spend the days walking round like zombies but we're happy zombies!

Other news - we managed to escape to the Isle of Wight for the night last Thursday, we joined Martins family who are over there for a holiday. We had a fab time and thanks to everyone taking care of Isaac and me we actually managed to relax a bit for a few hours at least so it was worth the stupidly expensive ferry fare just for that, plus we all got spoiled by family, which is always nice.

Isaac has settled really well into big school and is loving it.

We're back to see Patrick's neuro next week so will update then xx

Long Long Summer...

2007-09-03T09:24:00.000-07:00

Hi All, Sorry again for the lack of information, it's been a very hectic month what with appointments every 5 mins and Isaac to entertain, it's been pretty tiring. Anyway, it's been a very up and down few weeks really. The last post I wrote at the beginning of August was quite positive as Patrick wasn't having any spasm like seizures. Unfortunately that didn't last long and just as we were becoming a bit relaxed he started up again. Thankfully he hasn't had any spasms that have been strong enough to distress him but he has been having about half a dozen a day which isn't good. We took him straight back to see his Neuro at Southampton who increased his medication to take into account his weight gain. We waited a week on the higher doses to see if that worked but unfortunately it didn't so it was then decided that they would put him back on the steroid Prednislone that he was on way back when he came out of his coma. They put him on a high dose and again we had to wait a week to see what happened. Not a lot changed so his neuro decided to increase the dose again and he's been on 60mg a day which is a massive dose. He was only able to be on this dose for 7 days as it can have serious side effects we have had to keep a close eye on his blood pressure and take extra care not to let him come into contact with anyone who is poorly as the steroid knocks out his immune system. So far all this change in meds hasn't really helped him. He is still fitting at least 6 times a day, he has had 2 EEG's over the last few weeks but they haven't shown anything significant. It is looking less likely that the seizures are all coming from one area as we were hoping because as predicted the patterns change with every scan. Hopefully he will have his repeat MRI soon so that may show something. Development wise Patrick is doing OK although it's swings and roundabouts as he can have a really good day when he seems really alert and is smiley and playful. Then he might have a bad day when his seizures are worse and then he regresses again and becomes jittery and loses his focus. He is very vocal now and likes to make his presence known, especially at 2am which is nice. One milestone he has reached is that he is now eating solids. He has a large appetite and a sweet tooth and although it can take a while to feed him, he does really well. If he's having a bad day with his seizures it's a bit more difficult as the concentration isn't there and he can't put the effort in to swallow much so we go to the bottle but that's not a problem.

We are back to Southampton to see his neuro tomorrow, he is having physio and occupational health on thursday. We now have an early support worker on board who helps us out with claiming the right benefits and makes sure we are aware of all the services available. So our diary is chocca at the moment.

The rest of us are all ok, I have joined a Pilates class to help me look after my back because as Patrick is getting bigger he is getting more and more awkward to lift and carry around. Billy did really well with his GCSE's he didn't get anything below a C grade and managed quite a few A's, considering his exams took place at the hight of Patrick's problems we are both particularly proud of him. Ashley is now looking forward to his year out, he is booked to fly out to his Mum's in Gran Canaria in November so that will be great for him. Isaac is starting big school this week! I'm not quite sure how I feel about this but he is quietly excited and a little nervous I think.

I will update again when I get a chance and hopefully have some better news.

Much Love xxx

Full Update

2007-08-06T07:53:00.000-07:00

Hiya, Sorry there's not been much up-dating over the last few weeks, we were waiting until he'd had all his appointments so that we had more to tell.

We had a busy week last week but a fairly positive one. We had an appointment with Patrick's Neuro at Southampton last Thursday. She was quite pleased with him, his seizures are still under control at the moment which is good. He's having no spasm like seizures at all at the moment, just the odd focal seizure, usually if he is startled or just as he is waking up. He has had no negative reactions to reducing the Sodium Valproate so that is good news. He is nearly off that now, just down to 1ml twice daily for the next 2 days then off it completely. They have taken some more blood to be tested, I think they're looking at his white blood cells but she said not to get excited as she's not convinced they'll find anything significant.
At least she's honest. Fiona voiced concern about his physical development, in particular his clonus (foot thumping). Apparently this should have worn off a bit by now but it hasn't so this may be a sign that he will have problems with his legs and feet in particular.

Patrick had his sight tested on Friday at Bournemouth hospital. We have been really worried about his sight and were expecting bad news as Patrick is still not fixing and following properly and sometimes he doesn't respond at all, even if you wave something right in front of his eyes. Something that would make the average person flinch or blink, he doesn't even seem to see. Anyway, the consultant gave him a thorough examination, or tried to as Patrick wanted to sleep through most of it which makes looking at his eyes quite difficult! It seems that Patricks eyes are perfectly healthy which is great, he agrees that something isn't right and that he does lack focus but this may be his brain not processing the info properly rather than a lack of vision. There are further tests that can be done to tell us exactly what Patrick sees but these will be done a bit further down the line. It is likely that his focus and vision will have been set back like the rest of his development and that it will just take time to get back to normal so he will be monitored closely and has to go back to the consultant in 2 months time.

Patrick also saw his physiotherapist and occupational therapist on Friday. They both had a good look at him and could really see some improvement from his initial assessment at the beginning of June. Patrick is still very behind with his development, in particular his muscle tone is still very low in his neck and shoulders which means he can't hold his head up and his arms are particularly floppy. In that sense he is still like a newborn so he is quite difficult to handle as he is constantly putting on weight and growing bigger. They have given us a special tumble form chair to sit him in that can be positioned quite upright, this should encourage him to hold his head up a bit and this will also be handy for when I start to wean him soon. They are concerned about his legs and feet, his feet tend to point inwards and are usually quite stiff so they've given us some exercises to do with him that might help loosen him up. He has to wear special insoles in his shoes to help straighten his feet a bit. His hands are also a worry as he tends to keep his thumb bent inwards so they may end up giving him a splint to improve that, he can't really grip anything at the moment so we need to work on his hands to encourage him to explore different textures etc. It would appear that his left side has been affected worse as his left shoulder, arm and leg is considerably more floppy and harder to control for him.

So, he still has a lot to contend with and we have lots of work to do to improve his development. No-one can tell us yet how well he might progress but we can see little improvements day by day. He is very smiley and happy and has a wicked laugh, he laughs out loud whenever the dog barks which is cute.
For those people who are registered on facebook.com there is some video footage of Patrick smiling and playing on my profile page. If you're not registered on there yet, if you register your details just search for my name and invite me as a friend, you'll then get access to any video's or photo's I upload.

Take it easy, enjoy the sunshine,
Love Gemma, Martin, Isaac, Patrick, Ash & Bill xx

All is calm....

2007-07-24T07:05:00.001-07:00

Hiya,

Just a quick up-date as nothing much to report. Patrick is doing really well at the moment. He seems to be responding well to his meds and is only having one infantile spasm a day that is very mild so that is good. He is still having loads of focal seizures though but these are easy to cope with (for us at least) as they only effect his face, he turns his read and rolls his eyes and his mouth goes funny as if he's chewing his tongue but this only last about 30 seconds then he's fine again and it doesn't distress him at all. This may get a bit worse as he gets bigger and starts getting teeth but we'll deal with that as and when we need to.

We were back at Southampton yesterday to see the Neuro's and they've decided to start weaning him off of the Sodium Valproate (Epillim). That is the only drug he's been on from the start so considering that he was still fitting really badly while on high doses of that it should be safe to assume it's not really doing much so hopefully wont make much difference once he starts coming off it. It should hopefully mean that he might me a bit less sleepy which would be great. He is very sedated at the moment and this will effect his chances of developing properly so it's important that we try and sort that out.

As for his development at the moment, he seems to be doing very well. He is really smiley and happy all the time when he is awake which is great. He has an appointment at Bournemouth hospital next Friday to have his eyes tested so fingers crossed for that. I'm not sure on his vision at the moment, sometimes I'm sure he's got good sight as he seems to fix and follow well but when you watch him laying with his play gym he never seems to be looking at his toys just hitting out randomly in the hope that he'll hit one, it's difficult to say really so I'll be glad to finally know for sure next week.

Anyway, that's about it, keep fingers crossed for our baby boy as he comes off the drug, hopefully he'll be fine but there is a chance he'll regress a bit. We'll keep you up-dated over the next few weeks so you know how he's doing.

Take Care, Love Gemma xx

Home again, home again, jiggety jig...

2007-07-15T01:30:00.000-07:00

Hiya, For those that don't already know we are home again. Patrick was discharged on Friday. It was felt that as the reason he had been admitted was so they could speed up the increase in meds and this had been achieved with some success, there was no clinical reason for him to be taking up a bed. Although Patrick is still fitting I agreed to him being discharged on the basis that he be treated urgently as an outpatient, we have an appointment on Monday morning.

Before his discharge Patrick was given an EEG which had some surprising results. The EEG results showed that the background activity that had always caused concern is now much less which made it easier to see what else is going on. There is now the chance that Patrick's seizures are 'focal seizures'. This basically means that they may be being generated from one area of his brain, in his case somewhere in the bottom right (I'm sure there's a technical term, I will find out). Although there is still a question mark over this, it is somewhat encouraging as if the seizures can be isolated there is some chance that even if he doesn't respond well to medication, they may be able to remove the part of the brain that is causing the problem. Now all this is very far off and Patrick will be having more scans and repeated MRI's as he gets bigger. The Neuro team haven't given up on the Infantile Spasm theory, Patrick's seizures have all the physical characteristics of Infantile spasms just no evidence to back it up. He is proving to be a very complicated patient and has some of the top Neuro's in the country completely baffled. In a way this is good news as I know that people like Professor Kennedy don't like to be beaten and the team will be doing everything they can think of to find the right treatment for Patrick.

At this moment in time Patrick is on 3 different anti-convulsants, Sodium-Valporate (a common anti-epileptic), Vigabatrin (usually for Infantile Spasms) and Topiromate (apparently good for focal seizures). He is also taking Biotin, a vitamin supplement that works along side the Vigabatrin. All of these medications have some sedative affect so Patrick is much more sleepy than he should be. At the moment he is still having the odd seizure, yesterday he only had one which was excellent but we have been here before where he has a brilliant day and we finally think the meds are working but then the next day he has 6-7 so it is early days. We are having to monitor and record every seizure, writing a description of his movements and how long it lasts. He has started a funny quirk of chewing his tongue and screwing his face up which we are told may be a focal seizure so we are monitoring that as well. We are also having to record his feeding patterns as he is so sleepy that he doesn't always manage to stay awake long enough to feed properly so we are taking advice from a dietitian for that.

So, a lot to take in I know, I'm still trying to get my head round all the details myself, hopefully we'll get some more info on Monday. It is great to be home though
and despite all he is going through, Patrick is absolutely gorgeous. Development wise he is still very floppy, he can't hold his head up but he doesn't let that bother him, yesterday he really started smiling a lot and he even giggled! He is very touch sensitive and loves having raspberries blown on his neck. He is a very happy baby and both Martin and I are proud as punch, he is definitely hard work as you can't take your eyes off him but we are used to that now. If he is sleeping and I am doing housework, but more importantly at night time if I'm asleep, he has a small wrist rattle that his Grandma bought him, I put that on his wrist so that if he does start fitting it alerts me immediately, a simple idea that works, until we can buy some more sophisticated equipment.

Anyway, I will update this after Monday when we know a bit more.

Take Care, Gemma xxx

a bit more news

2007-07-12T13:13:00.000-07:00

but not a lot! The vigabatrin definately seems to have had an effect but Paddy is still having fits. Over the past couple of days, the fits have come down in number, quite dramatically in fact and those that he is havong are nowhere near as distressing for him either.

So far today (since 5.10 am) he has had only two fits which were very mild. Good news it seems but we had a similar run after he was put on the Topiromate initially so I am just waiting until I open my mouth too wide or too quickly so watch this space.

Love from the Conyards
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Getting cuddles from my baby

2007-07-10T15:33:00.000-07:00

The Prisoner

2007-07-10T14:56:00.000-07:00

I think Patrick's first words will be 'I am not a number'. Poor little bloke is still in Southampton and still having seizures although they have been greatly reduced now. Reduced not only in number but (thank Goodness) in severity too.

As I have mentioned in an earlier post, he has now been put back on Vigabatrin and last night (Monday) this was increased to the maximum dose allowed for a baby of his weight. The result is that so far, since that increase, he has had only a handful of fits and Gemma says they are very mild. So that is a bit of good news and welcomed by us all.

Obviously I try to temper my enthusiasm with caution because as his Dad I want each new thing to work and can get carried away in my reporting of it and I don't want to mislead anyone. Albeit unintentionally.

To that end, Gemma asked Prof Kennedy what is next and he confirmed that this new dose also has to be given a proving period before we can decide to withdraw it should it fail to work. Gemma then asked if there was a plan B to which he smiled and said 'oh yes - don't worry'. So again, he manages to reassure us even when giving us.... not exactly negative views because he is just being honest of course - but I think that from a different person we could walk away from chatting to him feeling 'down' but somehow he manages to tell us very little, not always positive but you just know that you can trust him and that he knows what he is doing. If that makes sense! I think that if he wore a hat, I would be looking for the rabbit!

I was just about to add that this new dose has knocked Patrick out again and left him sleeping most of the time but having just spoken to Gemma (it is 23.18), she informs me that Patrick is now wide awake, full of the joys of spring - I know it is summer but blame the greenhouse effect - and is currently singing and wanting to play. Again, this is something to be grateful for but I am not the one who is up there with him, absolutely knackered and wanting to sleep. Tee hee!

We shall see what the next few days bring and hope that I can continue to report good news. From what Prof Kennedy said to Gemma today - it looks like they will be at the hospital longer term rather than just a quick visit. We had a chat about this and agree that we will keep doing what we are doing, how we are doing it. It isn't nice to be apart (those who know us well, know that we are a very close couple and genuinely enjoy each other's company and do miss each other quickly) but we have to do what has to be done for Patrick and there is no way he will be left on his own up there. When he was in the coma it was a different story of course because he was unaware of anything really but this time he is fully functioning between seizures and we just couldn't contemplate it.

Isaac and I get up to the Hospital daily and we manage to eat dinner together with Gemma (and Patrick in attendance) every day too so we have some sort of continuity for Isaac as well as for us. The big boys are obviously of an age that makes it easier to explain and they understand what needs to be done. They have actually been terrific throughout this whole period and have been supportive and supported. I am actually very proud of my little family and they are all my heroes - Paddy in particular, of course.

Well enough of me gushing about my wife and kids - that is not the point of this blog.

Thanks as ever for the support of you all and the understanding of those who have been leaving messages but not always getting replies. You know it isn't through ignorance but sometimes we just don't have the energy to talk about it when it has been a bad day. I guess that IS the point of this blog!

Much love to everyone
from all of us
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just a quickie

2007-07-08T03:05:00.000-07:00

Hi all

no real news as such this morning (Sunday) but the fits continue. We hope to maybe see a neurologist today if one is about.

I was just speaking to my sister Angela and she mentioned the fact that she was unaware that we could make and receive telephone calls from the hospital. The ward that we are in is fine with us using our mobile phones so please feel free to give us a call. What I would suggest is that perhaps you would text first, just to make sure that Paddy isn't hitting the bottle or napping/fitting/settling down for a nap etc. That way, Gemma can let you know if it is ok to call.

**Update: We got a mobile for Gemma so I have removed the request. We have borrowed one off Gemma's Mum till our upgrade comes next month but thanks to everyone**

hope to have more news soon.
Lots of love
From us lot
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Spoke too flippin' soon of course

2007-07-07T11:58:00.000-07:00

Just after I finished the post for last night, I spoke to Gemma and she told me that Paddy had just had a fit! Not too bad it seems but I must have spoken to soon.

He had another at 03.00 this morning and then another couple by the time Isaac and I arrived just before ten am. While Gemma was out with Isaac, Patrick had a little sleep and was then awoken by some strange facial movements and then body jerks with some vocal activity too. I am not sure if it was a seizure but it certainly wasn't normal behaviour and the nurse on duty agreed.

He was a good boy and took two bottles while I was there and as I settled him down for a sleep, he had a seizure more like the ones prior to the vigabatrin and he was screaming with each spasm! Not a good sign but it is still early days with the Vig Drug so let's keep our fingers AND toes crossed.

News as it happens.............
Martin, Gemma et al
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Let's go round again.........

2007-07-06T14:08:00.000-07:00

I am having a touch of deja-vu again (that is a subtle joke by the way) but it seems we have been here before.

Patrick was given the vigabatrin again last night and he actually settled down to sleep without any fuss. That in itself was a noticeable change and he slept all night. Prior to the vigabatrin, he had another massive seizure and vomited his feed which he had just finished. Gem was quite upset/scared/shocked by this one but thankfully that was the last of those. (so far).

This morning broke with just one mild seizure and so far ( as of 9 pm, he has had no more). The down side is that he has been quite sleepy and when awake, he has been very agitated, vocally protesting and unwilling to interact with anyone. This is a blow because as much as we want him seizure free - and we want that most of all - we also want our baby to be aware of us and want him to join in with us. He has been doing this in between fits and we had hoped this would continue but obviously his comfort is paramount. Let's hope that as his body becomes accustomed to the drugs, so his awareness and interaction improves too.

I misinformed you via my sister yesterday and said that the topiromate was being withdrawn but this doesn't seem to be the case and in all honesty is probably a big part of why he is so out of it again. The Neuro has said he wants the fits under control as quickly as possible at which point he will start to withdraw any drugs he then feels are unnecessary. He has also said that he wants to check out another possible metabolic issue involving enzymes and Patrick will start treatment tomorrow for this. (Saturday). I can't remember what the vitamin/drug is called but will update this blog later when we know more about it. Again, this is an outside chance but we all have hopes for any little miracle so here goes nothing as they say.

It looks like Gemma and Paddy will be incarcerated for another three days or so although Gemma has got a day pass for tomorrow and is taking Isaac out to see the Brum roadshow in Christchurch. He doesn't know anything about this so it will be great to see his face when she tells him! I will be doing the day shift with my little boy while they are away and I can't wait to have him all to myself. (By the way, Brum is a kids' TV show about a little vintage car that goes on adventures! I wonder if he will get a parking ticket in Christchurch?)

Depending how well I cope tomorrow, I should be able to update this blog when I get home again. If not, it will be as soon as is possible.

Just for the Medics amongst the family - (name dropping now) - The Consultant Paediatric Neurologist looking after Patrick is Professor Colin Kennedy who apparently knows his stuff judging by the amount of Google hits he has. He is something of an authority on Infantile Spasms and early onset epilepsy (I just looked that up as you can probably tell.) Anyway, so far we have been very lucky with all of the Neurologists that have been involved with his treatment and indeed all of the medical staff. It is also nice that none of them have tried to blow us up in the car park too.

On that note, I shall leave you all in peace and say goodnight and again thanks to everyone on Patrick's team and in the fan club too.

We will never get bored of saying thanks for all the love, support and kindness that have been shown to us throughout. You will all get a mention in Gemma's book, no doubt :-)

Latest news 5th July 2007

2007-07-05T01:37:00.000-07:00

Knowing how we all worry when we don't get any news, Martin and Gemma have asked me to post this update for them and to pass on their apologies for not updating sooner but as you can appreciate they have been pretty busy and to be honest there hasn't been much to tell as there has been little change in Patricks condition.

Patrick is still having seizures and though they are less frequent they are lasting longer. He is having about 9 clusters a day on average and they still appear to be quite painful. The doc's have now decided to withdraw the new adult drug (Topiromate) that they put him on and reintroduce the anticonvulsant (Vigabatrin) although this can only be used in the short term (max 2 years) due to the possible side effects.

Martin, Gemma and the boys want to thank everyone again for all the love and support and will keep you posted on Patricks progress.

On familiar ground......

2007-06-29T01:10:00.000-07:00

Hello all
as we are sure you already know (most of you at least), Patrick has been re-admitted to Southampton General Hospital.

The reason for this is that following on from the posts below when we got the news from the EEG carried out after the appointment with the Neuro, his fits increased quite dramatically. Sadly, this time the fits seem to be causing him pain too as he really squeals and then cries quite wildly as each one hits him.

The seizures were coming in 'clusters' as the Neuro described them and he was having, on average, two to three clusters per hour when awake. On Tuesday he had 17 clusters just during daylight hours, that may not sound much but when you realise that each cluster averaged 10 seizures each, it puts it into perspective. 170 Seizures while he was awake! We are unsure just how much activity there is when we are all asleep but we are hoping to have a night vision cctv camera soon which will record any movement on his part and then e-mail a recording to us if there is any activity at all. We have a camera that allows us to keep an eye on him while we are awake but as he doesn't make much noise, unless he screams out, we wouldn't know if he was having a fit overnight. (If he is asleep during the day and fits, he makes far less noise generally.)

Tuesday evening was even worse and we made the decision to telephone the neurologist weds morning to see about getting him admitted. We were concerned that the new medication swap over was leaving him vulnerable as the old meds wore down and the new meds hadn't built up enough yet. During tuesday evening Gemma recorded in our notebook that out of 60 minutes between 9 and 10, Patrick was fitting for 28 of them!

By the time we got him off to sleep, we were both drained; emotionally and physically washed out. When the morning came, we left a message for the neurologist and she was able to contact us later in the day. Patrick was admitted wednesday afternoon and the whole circus strated again.

Thankfully he is now in a safer environment with regard to having his medication changed quickly and so the change has taken place. He has been violently sick a number of times and this is a known side effect of the new drug and Gemma tells me that this morning (friday) he is not interested in his bottle at all. This too is a side effect that we had been expecting. It all confirms to us that we did the right thing in getting him back into Hospital as I really don't think we would have coped at home. That is to say, yes we would have got the job done but I think it would have left us both in bits. There are certain times when as Parents we need to hand over control to those better able, better trained etc and it is the Medical team's responsibility to do things like this.

Well I am starting to ramble now so I will sign off for now but will try to update later as more news comes in.

Thanks for all the good wishes etc

2007-06-22T02:56:00.000-07:00

Keeping Strong

2007-06-22T01:57:00.000-07:00

A lot of people keep asking me how we are able to cope so well and stay so strong hroughout all this so I thought I'd just add a bit to explain how we are dealing with all this.
It has always been my view that things happen for a reason, I believe strongly in fate. Now, I could interpret all this in a negative way as a run of bad luck and think that I must have done something really bad in a past life to deserve this, if I was that sort of person I would have hit the bottle by now and would not be so strong. Thankfully I am able to always find the positive in any given situation, a quality I have learned over the years, having lived a very interesting and sometimes difficult life so far, I have experienced quite bad depression in the past and have chosen not to go through that again, therefore I must find something to smile about whatever the difficulties I face.

Patrick is a very special baby, there are thousands of babies born with disabilities all the time and there always will be. These babies need special care and lots of love and patience. Without blowing my own trumpet I know that as a family we have the patience and the love that is needed to cope with Patrick, I believe that special babies are delivered to special families. I'm not religious so I don't know where I get this belief but I know that I have always held this thought.

A lot of people have also said that they feel sorry for us and that we really don't deserve all this. My answer to that is, if special babies are born all the time, what makes us any less deserving than any other family? Patrick deserves the very best chance to reach his potential and we can give him that.
If someone shows sympathy, however well it is intended, it actually frustrates me. It's almost like saying 'Patrick's problems are a burden and you don't deserve it' and I feel very strongly that this is not the case. Patrick is beautiful and strong and I feel blessed to have him as my son, even with all his extra needs.
Thankfully Martin shares these views, making us a very strong combination, we are able to be strong for eachother and if one of us is having a bad day, the other can provide the lions share of strength for that day.

I have had quite a bit of contact with people with special needs and their carers through my work as a youth worker. We run a special club for Physically and Mentally handicapped teenagers. These people enjoy their life and live with no fear and are surrounded by strong people, I have never met a carer yet who couldn't find something to smile or laugh about, however tiring it may be to look after their child.
With all this said, I don't want you to think that I don't have my moments of despair, I wouldn't be normal if I didn't shed a few tears. But throughout all of this my tears have been shed for Patrick if he is pain or for Isaac who of course doesn't really understand the severity of our situation and will discover as he gets older and sees Patrick developing that he may not be able to teach his little brother to play football, something that he has been looking forward to since he found out I was pregnant.

I'm sure many people don't know what to say to us at the moment so they either say 'I'm sorry' or say nothing at all. We may not need sympathy at the moment but we do still need strength and some sense of normality so don't think twice about getting in touch, we're not able to travel too far from the hospital at the moment but visitors are always welcome.

Back to the drawing board...

2007-06-22T01:17:00.000-07:00

Hiya, Patrick had his first outpatient appointment with his neurologist yesterday and I'm very sad to report that it wasn't a great day.
In general Patrick seems to be doing well but for the past week he's been suffering from severe stomach cramps that reduce him to tears. We had consulted our GP who put it down to constipation but advised us to talk to Dr Goodwin (his neuro) about it. We upped his laxatives which has helped his constipation but the cramps didn't subside. We managed to get some video footage of the cramps and when Dr Goodwin saw this she said that it was unlikely to be anything sinister but booked him in for an EEG just to be sure.
It turns out that these cramps are in fact seizures. As you can imagine, this was the worst news for us to deal with as we really thought they had the seizures under control and had now been focusing on his development problems. What makes it even more hard to deal with is that these seizures actually hurt him, to the point where he cries out in pain, they only way I can describe it is that it looks like he is being electrocuted, if any of you have ever played with one of those toys that give out an electric shock if you press the wrong button, it's like that but for a 4 month old baby who doesn't understand what's going on this is really harsh. I've said all along, we can totally cope with any disabilities and development issues he may have, but what we really struggle with is watching our poor baby in physical pain and being able to do nothing to ease it. Of all the different types of seizure he could suffer from, this seems to be the worst as he's never shown signs of being in pain before.
So, we can now confidently say that he has not got a vitamin B deficiency so we can now stop giving him the horrible supplements he's been on that make him sick. They have also confirmed that although these seizures look a bit like infantile spasms (west syndrome) his EEG results don't show this to be the case either.
So they need to play about with his meds again and try and find another combination that will work for him, the plan at the moment is to Stop the Pyradoxil (Vit B) and the Folinic Acid. They are also weaning him off the steroids (Prednisloane) and then will look at reducing his Sodium Valproate and introducing a new anti convulsant (Topiramate) but his Neuro has said that they need to get clearance on that as it is never usually used in such young babies which scares me a bit. We have also put him back on a low dose of Phenabarbitone as he didn't seem to be having these episodes when he was on this, unfortunately Phenabarb is only used as a quick fix and not as a long term solution. We are monitoring him very closely at the moment as we are anxious that this may spiral out of control again. We have been told that if they become more regular (4-5 an hr) we should take him to Poole hospital where they can up his meds and we really would be back where we started. At the moment he is having between 1-3 an hour, some more severe than others, they don't always hurt him.
So, we're back on the roller coaster for a while until we get this under control, we'll update you as and when we can.

Ashley's Ailments!

2007-06-12T15:02:00.000-07:00

Just another thing for us to deal with, Ashley (our eldest) was taken to hospital with a punctured lung today! Thankfully not the result of a fight but as a result of a bad chest infection. He had to have a chest drain and was allowed home but has to take it easy. He is absolutely fine now, just a bit tender and is back at work like the trooper he is. I dunno, there's always something to keep us on our toes!

Finally some answers...

2007-06-12T13:41:00.000-07:00

Hiya, well it's been a roller coaster the past couple of weeks since we brought Patrick home. We are slowly settling into some sort of routine, everything revolves around Patrick at the moment, his medications have to be taken at certain times, the first of which is at 4am! Patrick is also difficult to feed, taking up to 2hrs sometimes which is a nightmare. Now we have had him home for a while we have started to see little things that aren't quite right and have had some concerns about his development. Thankfully we had an appointment today at the Child Development Centre in Poole so we were finally able to get some answers and some clarification as to how things may be long term.
Patrick was assessed by various specialists including speech and language, physio, and paediatric consultants who assessed him as a team. All together we were there for 1 1/2 hrs so it was quite in-depth and they were able to see him asleep, awake and feeding. Unfortunately their findings weren't the best we could have hoped for.

Basically we have now had it confirmed that Patrick will be significantly disabled. He has problems in all areas of development at the moment. Patrick showed little or no response to the Dr's trying to interact with him, when he did respond to anything it was a negative response, he got agitated when they tried to make him touch anything and really didn't like being played with. I know you could argue that this would be normal for a baby not to like strangers around him but most of the time it was like he didn't even know they were there. At the moment we are unsure if his sight and hearing have been affected, personally I think he can see and hear but his lack of response to everything makes it difficult to be sure. He has now been referred to specialists who can carry out further tests in both these areas. He is also being referred to a dietitian who can hopefully help with his feeding, at the moment he isn't getting the amount of milk he should be as he never keeps his last feed of the day down and also struggles with most of his other feeds. The dietitian can hopefully sort us out with some special milk which will give him the right amount of calories in less feeds so hopefully he wont be throwing up every evening. Another concern we had was that Patrick is very 'jittery'. Whenever he stretches or when pressure is applied to his feet, they shake, I call it the 'thumper rabbit effect'. We had been worried that this was a sign he was fitting or having a bad reaction to his meds but it's neither. Apparently Patrick has over active muscle tone and the shaking is a result of his brain not sending the right messages out. Although it's not great news to hear his brain isn't functioning correctly, it's also a relief to know it's not seizure activity and at the moment it's nothing we need to be anxious about as it is not dangerous to him. It may affect his mobility in the future but hopefully the physio he we be having will help. One thing that Patrick did seem to respond to was the sensory room. This is a darkened room with bubble lights, fibre optics and soft music, he was totally calm in this room and actually watched the bubbles with some interest. It was very helpful today to learn what he does and doesn't like as it will make it easier to care for him at home, at least we know now to take everything slow with Patrick, softly softly and gently.

So, in a nutshell Patrick is a very poorly bunny that will need lots of extra care. On one hand today has been very difficult, especially explaining all this to our bigger boys, on the other hand I feel quite relieved to have had some answers so that we can move on with some idea of what we're dealing with. It's gonna be life changing for all of us and I'm sure things won't be easy. although I am confident that if anyone can cope with Patricks needs then we can, especially as we are so lucky to have such fantastic support from our family and friends.
We have been told that we will have access to lots of services including special education needs and respite which again makes it clear just how poorly Patrick will be, most people have to fight for these services. We'll take any help going and somehow we'll find a new 'normality' and just get on with it.
One thing I would ask is that people don't start treating us all with 'kid gloves'. A friend who desperately needed a shoulder to cry on deliberately avoided talking about their problems today because they thought we had enough to deal with. Please don't treat us any differently, both myself and Martin have always been available to our friends and family and we always will be.

Patrick's Home!!

2007-06-01T10:43:00.000-07:00

Hiya, been a while since I was able to update this blog as I've been stuck in the hospital for the past week but I am delighted to announce that Patrick was discharged from hospital yesterday. It would have been a day earlier but they wanted him to have another EEG before finally releasing him. Thankfully the EEG results showed no epileptic activity which is an improvement. There is still some abnormal 'slow waves' present but we're not sure what that means or how that might affect his development, if at all. We haven't been given a confirmed diagnosis or explanation for why this all started, all we have been told is that they are treating it as a vitamin B6 deficiency and will continue to do so unless he starts fitting again in which case they'll know it's not that. We have been given open access to Southampton hospital for 4 weeks and will have support from community paediatricians and physio-therapists. Patrick will have to attend a clinic in 4 weeks time and will basically be monitored as he develops. As he grows they may be able to do further tests that will help them confirm his diagnosis.
He has come such a long way in the last few weeks that it really is amazing to see him looking so well. He seems to be doing everything right at the moment, he focuses well and can follow an object as normal. He has started reaching for the toys on his play gym again, he smiles and is feeding well (still has to be positioned upright but is taking the right amount).
He is still on 6 different meds which is a bit of a nightmare for me as I have to prepare them all and give them at the right times, the pyradoxil is a particular pain as this has to be crushed and mixed and takes ages and he has to have that 3 times a day, the first one at 4am! Anyway, all this is a small price to pay for having him home.
We have become very paranoid parents but I don't think anyone could blame us for that, we are currently trying to find funds to purchase an 'all singing, all dancing' baby monitor that has a camera with audio so that we can watch his every move and look out for any signs of seizures from downstairs. At the moment I am putting him to bed in his cot next to me but can't leave his side, having this monitor will hopefully mean that I feel confident enough to leave him to it.

Anyway, I am off to have dinner with my family, something I have been missing a lot for the past few weeks. We will keep the blog going but won't be updating it daily, we'll update it as and when anything happens and will send e-mails out to let you know to check it.

Thanks for all your support and prayers, they have obviously been working. xx

Bank Holiday Monday

2007-05-28T13:57:00.000-07:00

Another good day today. We were able to go and eat together again and Patrick enjoyed our little walk with the buggy. Isaac seemed to enjoy it too and he was very hands on with his little brother. He was very sweet and kept stroking Paddy's face and eye occasionally!

Poor Paddy has got a cold now it seems and it was quite strange giving him such an innocuous medicine as calpol(R). It seemed quite inferior compared to the other drugs he has been (and remains) on. He has had a slightly raised temperature and looks pretty cute with very rosy cheeks.

Again, he is even more vocal today and is joining in with the conversation more. He is still feeling the effects of the ventilator and when he coughs, he sometimes follows it with the most sweet yet pathetic little squeak which breaks your heart to hear.

Given his age, we are wondering if it is a cold or if maybe he is teething. Such a normal thing that seems so strange given the surroundings. Everything has a surreal feeling in the Hospital. Us going for a walk with the little boys is really strange, freeing yet with constant reminders of our lack of freedom. Sounds dramatic I imagine but very difficult to explain how it feels.

Anyway, it is still all positive, even with Patrick's cold, so bring on the rest of the week cos our baby is coming home! Yay!

Love from
Martin, Gemma, Ashley, Billy, Isaac and Patrick
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We are casting soon for the film of the blog but we are not sure if Angelina Jolie and Bob Hoskins are available though.

Sunday my Prince will come.... (sorry)

2007-05-28T09:14:00.000-07:00

Not a lot to add really for sunday. We had a nice day with Patrick and he is just getting better and better with each reduction of the medication. He is more vocal every day and he is really interacting now too.

We are waiting until the Neuro comes back to see us again just to get confirmation of what they think is wrong with Paddy but even the Nurses are aware that the plan is to release him this week! Let's hope the plan comes together so we can post the final Hospital Episode of this blog soon.

We may keep the blog going until such time as he is fully out of the woods but will play that by ear.

Love to all of you, this could have been so much harder for us without your support and help.

From The Conyard Gang
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Saturday Special

2007-05-27T03:18:00.000-07:00

We had a great day yesterday (Sat) and were allowed to take Patrick out for a walk in his buggy. It made us feel quite 'normal'. Yippeeeee!

Patrick was absolutely over the moon and was cooing away as he was able to see the different lights on the ceilings of the corridors and the sunshine when we went outside. It was a magical moment for us. Then it got cold and we went in again! We were also able to go to the restaurant together and eat with Patrick next to us, something else we take for granted but was special yesterday too.

Gemma nipped out and bought a new cot which will be delivered this week, as we need to get things straight for Patrick's release. (Time off for good behaviour I think) We seem to be on track for him being allowed home this week and there is no point putting him back into his Moses basket when he has been in such a big cot for the past four weeks. It just hit me then that it IS 4 weeks today since this whole episode started. Seems so much longer somehow!

Anyway, Gemma and Isaac nipping to Southampton proper, gave me a nice afternoon alone with Paddy. I was able to feed him (which in itself is a whole routine because he has to be sat with his head forward to avoid him choking) and I got to change his nappy (a bit of planning on Gemma's art, methinks)and then a lot of play too. At one point, we both nodded off while having a cuddle on Gem's 'Z' bed, which was lovely too.

Patrick was obviously tired from getting out in the fresh air and Gemma bathed him before settling him with a bottle. He had his 6 o'clock meds a bit early because once he is asleep it is very hard to wake him and it was clear that he was about to sleep.

I got home with Isaac and got him ready for bed and then got a text at about half eight from Gemma - The Hospital Pharmacy had run out of the Pyradoxil medication which Patrick was due to have at eight!

They eventually located some - at Gt Ormond Street - and it was being delivered asap. I assume that Peter Pan was busy as it arrived by taxi at some time after 12 I think it was. The hardest part about this is that this is the medication that is NOT being reduced or cut out because this is the one they think is actually stopping his seizures. So important is it that it was allowed to run out! Anyway, they have had to write out incident reports and such like so I hope someone gets their knuckles rapped. I was all for going up there and pointing out the error of their ways (Gently, of course) but my wife being the sensible one, calmed me down.

Anyway, all is well that ends well and all that malarkey and he got his meds eventually. In fairness to the Nurses, they did all they could do to locate the Pyrodoxil and contacted the Neurologist at home etc to ensure that he was safe. (Patrick, not the Neurologist!)

I am going to go back to the Hospital soon and will update the blog again later with any news etc.

Love to all from
Martin, Gemma, Ashley, Billy, Isaac and Patrick
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The Changing Man..........

2007-05-25T12:18:00.000-07:00

Hello to all of Paddy's fans! We had some encouraging news today so I thought I should share it with you. The Neurologist came along this afternoon and I causally asked if there was any idea of how much longer Patrick was to be in Hospital. I was quite surprised when she said that she hoped he would be out at the end of next week!

She also said that she hoped that he would be OFF the medication in time for that to be possible. As you can imagine, I asked her to repeat what she had said, she did and I then asked her to explain cos I was sure that I was getting this wrong. It seems that the current plan is to wean him off of the Vigabtrin completely by Tuesday if possible and then the same with the Phinabarbetone (spl?) by the end of the week.

As pleased as I was, I still wasn't sure that I had got it right and then the senior on call Neurologist stopped by and said pretty much the same except that she was hoping that Patrick would be able to come home sometime around Wednesday. It seem that they are not convinced that it is not a vitamin problem and he will be staying on the supplements for that but will be taken off the other two mentioned above.

I have asked Gemma to confirm all of this with them over the weekend in case I have got it wrong but I am sure I have got it right so watch this space.

Love from
Martin, Gemma, Ash, Billy, Isaac and Paddy
xxxxxxxxxxxxxxxxxxx

Easy does it

2007-05-24T11:13:00.000-07:00

Today has been another positive day. Patrick's first night on the lower dose of Vigabatrin gave him more awareness and made him more active. It also made him more awake which meant Gemma was also more awake. Most of the night in fact!

We are hoping that if the meds are reduced even more, Patrick will be more like his old self soon. He still hasn't cried, which must sound an awful thing to wish for but for us it is one of the signs of normality that will mark his recovery.

So, not much else to report just yet but at least there is nothing negative.

Love from
Martin, Gemma, Ashley, Billy, Isaac and Patrick

(Look out for the upcoming Patrick brand merchandise available for summer. Avilable in all good stores and some rubbish ones too.)

Same wit - different day

2007-05-23T13:24:00.000-07:00

Welcome back. Patrick has been seen by a Neuro again today and she felt happy that he was progressing OK. The decision has been taken to reduce his medication from this evening and having just spoken to Gemma, he seems to be more active with the lower dose.

Gemma managed to escape today and went to Southampton with her Mum, Auntie Sue and Isaac. I actually felt quite sorry for the poor unsuspecting people of Southampton and settled down to finishing Patrick's bottle. He is feeding quite well when he is in his chair and he had a good guzzle.

Once he had finished his bottle,we had some serious cuddles and he got much kissing from Daddy. About an hour later, the Physio came along and put him through his paces with movement exercises to try to increase his muscle tone. This has dropped a bit due to him being so immobile during his comas and he just has to be encouraged to move his arms, legs and head fully. At the moment, his legs are not too bad but his arms stay out from his body and slightly raised so she wants us to make him bring his arms across his chest more. Another thing that she wants us to keep an eye on is that he favours his right side with his head. Basically he lays with his head to his right and looks off into the distance. If you approach him from that side, he will track you with his eyes but he tends to just swivel his eyes in your general direction if you approach from his left. The Physio has asked us to avoid coming towards him from his right side so that he has to start moving his head to the left in order to engage with us. I noticed that he will do this eventually but he is a bit lazy with it just now and turns his eyes as far as he can and then obviously decides we are not that interesting. When I rattle one of his noisy toys from that side, he will put more effort into it! Says something about us I guess haha.
For the Medics amongst us, he currently has just one cannula in his left hand and I am guessing this is for quick access for meds if the reduction does not have the desired effect. Other than that, he just has the pulse/Oxygen Saturation monitor probes on his foot. I am not sure which med(s) has/have been reduced and to be honest, I am not entirely sure which ones he is on currently. (Gemma does all the shopping so she probably knows!)

So.... the next few days will hopefully show an improvement in Patrick's awareness and control of his body without a slip back into the seizure activity. Keep your fingers crossed and we will speak to you soon, hopefully with good news.

Love to all from
Martin, Gemma, Ash, Billy, Isaac and Paddy
xxxxxxxxxxxxxxxxxxxxxxx

Tuesday's News

2007-05-22T12:55:00.000-07:00

Well today brought the results of the EEG that was carried out yesterday. The Neurologist found them to be hopeful but there is still background activity going on that show signs of ' a potential for seizure' although no direct seizure activity was evident.

Promising stuff but it means that there is still an underlying problem that is as yet unresolved but baby steps before running and all that. The Neuro, Dr Thomas now wants to adjust Patrick's medication to see if we can get to a level where he has near normal response but still protection from the seizures. At present we are hopeful that Paddy can have any degree of normality and a minimum risk of seizure, whether this can be achieved - only time will tell really.

Because he is so young, I think it is going to be a case of waiting to see how he develops to see if any developmental problems arise. It looks likely that there will be problems but as to how severe or how often etc, we can't say. All we can say is that whatever the challenge, Patrick will have the top support available - US! (And you all too, no doubt.) The hardest part of all of this is that he just looks like such a (I hate this word) Normal.

I watched some film that I took of Patrick prior to his illness and showed it to Gemma. There are some possibly odd little movements that he makes and we now wonder whether symptoms were presenting themselves but we just hadn't seen them for what they were, or maybe we are now just trying too hard to see where, when and how it all started. I am sure we will never really know and maybe it isn't important to see how it started, we just need to work out where we go from here, now that we know about it.

On a more upbeat note, Patrick was visited and checked over by a nice Speech and Language therapist today. She watched as Gemma fed him and listened to his swallow and suck reflex with a stethoscope. He seems to have secretions pooling in his throat which are causing him some irritation but is otherwise coping well with bottle feeds. The physio terrorist (my little joke) also looked in and suggested putting him in his chair when feeding him as this allows his head to move forward better and so aids his swallowing. Gemma put him in the chair and this did indeed seem to make a difference. I think the speech therapist was looking towards having his tube put back in to err on the side of caution but changed her mind when she saw the improvement the chair made. We were both happy about that as so far we have seen Patrick moving forward, little by little and re-fitting his tube would have felt like a step backwards.

We mentioned to the speech lady about the fact that Patrick doesn't cry - (he didn't even cry when a cannula was inserted into his hand last night after we thought he may have been having very subtle seizures. We appear to be wrong though thank God)but she said it is quite possible that his voice box may be a bit bruised as a result of the ventilator being used during his comas. She has asked that one of the respiratory Doctors to check his larynx, just to be on the safe side. We will update you on that too as and when.

Again - a bit more upbeat - Gem was able to give him a bath while I was there and I joined in too. Isaac was trying to spur him on to splash me and for one very surreal moment you could almost imagine us being at home and having a normal bath time with the nippers. Very strange feeling for a minute! It is funny how little things that are taken for granted mean so much when they are given back to you after a period without them.

Any hoooo, I am going to leave it there for now. I will probably come back to this and revise parts or add more but this will probably be in the morning now as I am a bit tired and the old head is drifting.

Thanks for all the good wishes and love that is being sent.
Love from
Martin, Gemma, Ashley, Billy, Isaac and Patrick
xxxxxxxxxxxxxxxxxx

Photos from Monday

2007-05-22T12:47:00.000-07:00

As promised, here are a couple of pics of the big fella!

Patrick's News Blog

Summer Holidays

Sponsored Walk Update...

Loving Life

HO HO HO Merry Christmas!!

A NOTE TO NEW FOLLOWERS

Latest scan results.

I did it!!!

How cute is that?!!

8 weeks and counting!

Our baby's no baby any more!

A Change For The Better?

Happy New Year!!

Ho Ho Ho Merry Christmas Everybody!!!

The Big Move...

All was calm when...

Brainwave

Back to normality, whatever that is!

In need of a holiday!

Summer Update

Tired Bunny....

Busy, Busy, Busy! (Still)

Naomi House

Patrick's world...

A frustrating week

We did it!!!

New Drug

Update

Thanks xx

A busy few weeks

Patrick's New Buggy

The morning after...

News just in...............

Rolling over!

No news yet.

Meet the Patersons

Patrick goes global!

Latest News

Race for Life

Busy Busy

Water Babies

Panic Over

Forgotten what sleep is!

A Good Week

False Alarm...

Wanted to share this

Poorly Bunny

A quiet week...

Happy 1st Birthday Patrick!!

Busy, Busy, Busy

Julia's House

Nothing to report

Play time with Patrick

All is well...

Progress...

Still no answers...

Happy New Year 2008 xxx

Christmas Wishes xxx

Welcome to Holland

Poorly Boys

Patrick's Tests

Meds Update

Seizures

Test Dates

Christening Pictures

Some Sad News

Quick Update

A Good Week!

Long Long Summer...

Full Update

All is calm....

Home again, home again, jiggety jig...

a bit more news

Getting cuddles from my baby

The Prisoner

just a quickie

Spoke too flippin' soon of course

Let's go round again.........

Latest news 5th July 2007

On familiar ground......