Panic Over

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!

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

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...

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

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

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...

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.