Lets start off with Christmas! William loved it! He saw so many Father Christmas's before the big day and we told him numerous stories about how he would come and bring his presents on Christmas eve and i do think he actually understood what it was all about. The week of Christmas he was at Chestnut tree house (our local children's hospice) and had a visit from the actual Father Christmas who arrived on his sleigh with his (real life) reindeer's and Mrs Christmas too which he loved!
Christmas day itself was great, William was very excited about his presents and was really interested in looking at everything which was lovely and then he managed to eat a huge bowl of Christmas dinner - and again the following 2 days!!
Father Christmas (aka us) got William a sensory tent which he loves and seems to spend all day in at the mo! We took it to Norfolk when we went up there and he slept in it! I must point out this is an indoor tent - we didn't put him in the garden!!
After Christmas William got poorly again though and ended up in hospital again twice which wasn't good, it seemed to last forever and he lived on dioralite for about 5 days as he couldn't keep anything else down. We were supposed to go back to Brainwave for our second assessment but William was too poorly so we have had to postpone it until March now.
January
Back to normality and back to nursery etc and what a difference it made. William is definitely a little boy who likes routine! He has now been moved up a group at school for parents and is doing much better now. He had definitely out grown the other group and was getting bored, this new group is far more suited to him and to the level of understanding he now has - much less singing and far more learning - Fab! He seems to realise that now he is in the "big boys group" he has to try much harder to keep up with them and he puts in so much effort and determination and does really well. Here are a few pictures to give you an idea of what he does...
We have also started a new programme with our speech and language therapist which involved teaching William to eye point so that eventually he may be able to do that to communicate. Its strange because you just presume he would know how to do it but it really goes back to basics and when we are playing we have to play with whatever he is looking at and say what he is looking at and if he looks at something else we have to say what he is looking at and then move onto that item. Its to make him realise that when he looks at something we notice it and act accordingly! Its very hard though as his gorgeous long eye lashes get in the way and we cant always see what he is looking at!!
We have also been back to chailey for Williams seating to be reviewed, he is getting on so well in his special chair that wheelchair services have finally agreed to fund one to be made as a wheelchair yay! We are going back for a mid-fit in about 6 weeks so hopefully William will have a wheelchair in about 3 months time which he can use at nursery and chestnut tree. He seems to have developed since having the chair, he sits far better when we prop him on the sofa now and will happily sit in the chair itself for a couple of hours - never thought that would be possible!
We also have an appointment at The Evalina next week to discuss Williams hip, his right one is quite noticeable now and his leg is shorter than the left one. I don't think its causing him any pain yet but that may change at any time so its best to get things sorted asap before anything gets worse. So a day in London next week, hope we can find something nice to do whilst we are up there rather than just the hospital visit!
And then in another few weeks we are back up there, this time to St Georges for William to have another MRI - his last one was when he was about 10 days old so he is having another one to see if anything has changed etc due to his seizures and to see if they missed anything on the last one as it was quite blurred.
All in all, William is being a joy at the moment. He loves being in his tent. He is enjoying nursery and school for parents, he smiles all the time and is constantly talking to himself - or should that be shouting at himself - and tries so hard to have a conversation with us, just a shame we don't have a clue what he is trying to say! He is eating really well - possibly better than ever before - and managing a whole bowl of lunch every day and sometimes pudding too! In fact a few weeks ago he was on my lap in a cafe when I was having a cookie and a cuppa and he managed to throw himself forward to pinch a bite of my cookie! Very impressive seeing as he is never interested in food and has never managed to take a bit of anything much before let alone manoeuvre himself forward to get it! Well done William - but stop pinching my cookies!
The only times he isn't happy at the moment are the days he doesn't have nursery or some sort of a group etc, his routine just gets messed up on those days and he hates it! Bring on school when he is there every day, he will love it!
Talking of schools, we went to see Ingfield School before Christmas and are going back in March for William to have an assessment. It is a school which specialises in cerebral palsy and works on the conductive education programme we follow at school for parents. It seems like a great school but as yet I am not 100% convinced its right for William and it is a very long way away. So we need to have a look at some others and then the fight will begin as to which one we want him to go to! Not looking forward to that bit!
I can't believe our little boy is going to be 3 this month - where has that time gone?! This time last year he was only 1! I will update again with some photos from his birthday and keep you all posted on what happens at the hospital appointments!
We are planning some more fundraising at the mo, another facebook auction which starts on 4th March - BIG THANK YOU TO EVERYONE WHO HAS DONATED TO IT. Plus a bake sale on 21st April at our Kids Kaboodle sale! Thank you to everyone who has supported us so far and continues to do so!
