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!