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.