Summer Holidays

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

Sponsored Walk Update...

Well it seems an age ago now but we had a really successful fundraising day back in August when a team of about 20 of us hit the promenade and walked for 5 miles to raise money for new equipment for Patrick. It amazed me at the time the amount of support we got on the day as the wind and rain decided to join us but we marched on, kids in tow without a moan from any of them. I've never seen the beach so empty as it was that day in August which made it all the easier for us. Now that all the sponsor money has been collected I can happily announce that we raised around £1250 which has enabled us to buy Patrick an amazing off-road buggy making walks in the country and down the beach or anywhere on grass accessible to him which is just brilliant. We've also just ordered him a p-pod bean bag seat which will give him some comfort at home rather than being plonked on the floor all the time! We have enough funds spare to help sort out his bedroom which we hope to have done in a few weeks time (he currently shares with us). We'll be able to construct a change table for him and make it a great space for a growing boy.

With all that said I have to say a massive thanks to all those who sponsored us and gave there time and energy on the day, I am humbled and honoured that we have so many great friends and family.

Loving Life

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.

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!!

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

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

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

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.

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!

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

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!!!

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?!!

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!

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!

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?

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!!

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!!!

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...

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...

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!