pre- Christmas update

Just thought a quick pre-Christmas update was in order!  Last weeks hospital visit was fine, the consultant had been advised by Williams previous paediatrician that William needed a Gastrostomy (cant spell that sorry!) which is basically a small operation to insert a tube into his stomach so he can be fed straight through it and also given meds.  We didn't think he needed it though as he has been eating really well recently and gaining weight and the consultant agreed which was very good news for William before Christmas!

He got a new seat a few weeks back called a corner seat, unfortunately he cant tolerate sitting in it so Ive just arranged to have it sent back, cant have yet another piece of unused equipment taking up space at home!  He cant use his standing frame at the moment either as we're still waiting for a head support for it.  Its ridiculous, he's had the standing frame since March or April and has only been in it a handful of times as the physio took so long to get get it set up when we first got it, then the head support wasn't suitable and now we have to wait for god knows how long for the NHS to get us the right one!  Seems odd that they're always pushing on us how important it is for him to have these pieces of equipment and then we do have them we cant use them!  On the plus side, having waited about 8 months, I have finally been given a date for William to go to the posture clinic at Chailey for an assessment for a wheelchair to be made for him, that'll probably take about a year to be made though by which time he will have outgrown it and his needs will probably have totally changed!  If anyone is thinking about starting up a new business, trust me disabled equipment is the way to go, they charge a fortune for it!

The last few weeks have been taken up by Williams numerous Christmas parties, he's now seen Father Christmas 5 times so it wont be such a treat when he comes on Christmas eve now!  He was really interested in all of the different Father Christmases though, probably wondering why they all look so different!

Last week we had the last session at the School for Parents which included another Christmas party for William.  The session itself was really hard work for him and he did get quite upset but managed to do all the things that were asked of him.  At the school for parents they don't use specialist equipment to help with seating etc and so William sits on a low wooden stool that would be fine for able bodied children, I support his back and he grabs onto a bar on the table to support himself and so far he is tolerating it for longer and longer each session.  The first time he only lasted a few minutes but this week he sat there for long enough to do some painting which he loved! 

He also made a Christmas hat (with some help from me!) I showed him a plate of decorations and by eye pointing he let me know which one he wanted and then helped me to stick it onto the hat and was very pleased with the end result!  The highlight of his session though was his first game of pass the parcel!  By the time we'd done a few rounds he was definitely anticipating the parcel coming to him and helping me to pass it to his left! 

He also had another stay at The Chestnut Tree this week, we dropped him off on Sunday afternoon and he seemed really excited to be there!  They very kindly offered us an extra night as well so he ended up being there for 2 nights!  He was playing happily in the sensory room when we dropped him off and had been promised swimming and some messy play whilst he was there!  Last time he was there he made some decorations for the Christmas tree!  I'm off to collect him this afternoon and have really missed him so I cant wait to get him back!  Hopefully he will have had a lovely time!

The Chestnut Tree is going to be featured on Daybreak on Christmas Eve so make sure you have a look so you can see where William goes and what a great job they do there.   They really are amazing there, in fact the girl who looked after William this time told me she feels honoured to be able work with such amazing children which I thought was lovely!

I've just finished wrapping all Williams Christmas presents, he's really hard to buy for because you have to choose toys that you can play with together bearing in mind his vision as well as his physical abilities to touch etc  we got him a drum from the early learning centre that plays music when you touch it, it has to be quite sensitive so he can do it himself so I hope it will be ok! His favourite toy at the moment is a similar toy that Portage have lent us and some bells he can shake with some help from me!  I have also decorated the Christmas tree with some bells this year so that whenever Roxy brushes past it she makes them jingle for William!  If anyone else has any ideas for sensory toys etc that might work for William I'd be really interested to hear them.

We've found a charity that offers free tickets to various attractions for disabled children so we've requested some for the Sealife centre in Brighton as William likes looking at fish and its quite dark there which is quite a nice sensory experience for him, we're going to take him there in the new year.  The website is www.merlinsmagicwand.org if anyone else wants to try them. 

This year has been another roller-coaster but I think William has really shown a lot of progress since last Christmas and he is all together a much happier boy which makes it all worth while!  I can't believe that he is going to be 2 next year though!

Anyway, hope you all have a fantastic Christmas and happy new year too!

Understanding?

We're off to Brighton Hospital this afternoon for some test results, as usual I've not really been thinking about it so the doctor will probably ask me loads of questions I cant remember the answers to and then tell me something really bad just in time to ruin our Christmas! 

Williams blue badge arrived today so we can now park in the disabled bays.  I have to keep reminding myself that this is a good thing as it will mean its easier to get him out of the car when theres no parent and child spaces and also that we can park free but it also means that William is now classed as disabled and makes it all the more real which is really upsetting.  I am going to get him a funky holder for his badge though not one of those depressing ones with a big disabled sign on the front to rub it in a bit more!  (Its the little things that make it easier!)  At least when we go to Brighton in a minute we should be able to park somewhere!

I think William is starting to understand more and more over the past few weeks and he is definately reacting to me talking to him.  He seems to know what I'm rambling on about and laughs when |I am funny (which admittedly isnt that often!)  Today I told him that he was going to nursery for his christmas party and he was over the moon!  I am sure that he knows more than he lets on!

His sleeping is still really good, touch wood!  Me and Kev have started telling him that his teddys really need him to look after them and that they get sad if he doesnt stay in bed all night and he listens, takes it all in and then sleeps through!  We have heard him wake in the middle of the night but unlike before when he would scream until we took him into our bed he now seems to settle himself and nod back off.  The extra sleep for us is amazing!

I saw a sign when I was in town today and it made me think of William, it said "the greatest pleasure in life is doing what people say you can't do".  He is so determined, I am sure he will be able to do many things that people say he won't.  Let's prove them all wrong William!!

Introduction

Well I'm not sure where to start really, the begining seems so long ago!  My son William is now 20 months but its been the longest most stressful 20 months of my life!  But I want to share his and my story so that others in a similar situation can see they're not alone!

William was born 3 weeks early by emergency c-section having stopped moving.  Once born he suffered from seizures and was transfered to SCBU at 1 hour old.  He was there for 4 days before he was diagnosed as having brain damage and was then transfered to NICU at St Peters hospital in order to be weaned off the seizure medication.  After a long 3 weeks in hospital he finally was allowed home the day after his due date!

That all seems so long ago now that he is a big strong boy!

So here's where we are now (briefly)

William is 20 months old, and he is lovely.  He smiles and laughs all the time and he is getting more and more interested in the world.  He tries really hard to communicate by making noises and eye pointing and trying to lean when he wants something.  He has started making different sounds recently as well.

He is really determined and gets really frustrated when he cant get his little body to do what he wants it to do.  He gets really cross if he cant move where he wants to and "shouts" at us to help him!  He loves trying to roll over and once you've started helping him he just wants to keep going and going!

Ok, so just for this first blog I'll explain the things that he cant do but should be able to for his age.  The only reason I want to list these is because otherwise its hard to understand how severe his condition is!

So he cant sit, stand, crawl etc.  He has little control over his arms and is not able to use his hands to grab things unless they are placed in his hand quite firmly and then he can only hold on for a short time.  He really wants to explore things with his mouth so once he has got a grip on something he really tries to get it up to his mouth. 

One thing that he does do which is very hard to manage is his overextension.  This is when his body literally bananas backwards and he pushes his whole body backwards.  He does this pretty much constantly, when  hes laying down, sitting in his chair or buggy and even when hes being held.  Luckily I am used to it so I hardly notice it but other people holding him always comment on how strong he is and that they struggle to hold him.

He has special equipment including a standing frame and a special chair but neither are really suitable for him as they are off the shelf items and his condition is so severe and unique that he really needs something made for him.

He has started sleeping through recently having had broken nights for pretty much the last 12 months and has only in the last couple of weeks started going to bed before 9pm!  Its a joy to have our evenings back!

He goes to nursery and our local childrens hospice which are both great for giving me a rest.  Plus I also take him to Ingfield School for Parents which is a special school for children with cerebral palsy, there they try to teach him about the physicalities of his body.

We have a great Portage worker as well who brings William toys every week and has been really great in leaving some with him so he can practise playing with them and hopefully learn about cause and effect.

We've been through a massive ordeal over the past 20 months and it has been really stressful for me and my husband but William makes it all worth while when he gives you one of his massive smiles!

I'm hoping to update this blog as often as I can to document Williams progress and our lives with him so keep checking back!

Merry Christmas!