Christmas - Feb!

Wow its been ages since I last updated the blog so apologies!  I hope I can remember everything that has happened since my last post!

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!

Poorly William :(

The past 2 weeks have been really tough for poor William - and us!  Where to start?

Well firstly William got quite a bad cough about 10 days ago and as he was coughing so much he was then vomiting -  we ended up taking him to the hospital incase it was a chest infection. His chest was clear but the doctors were worried incase it turned into something so they put him on antibiotics. 

They also noticed an infection in his gastrostomy site so he was put on another antibiotic for that at the same time. 

As usual the antibiotics gave him horrendous diarrhoea (can't spell that sorry!) which resulted in his poor little bottom becoming bright red and sore to the point that it was weeping and he was screaming in pain. Sudocreme etc just didn't touch it. Add this to the fact that he was still coughing and vomiting and back we went to hospital on the Wednesday.

They changed his antibiotics as the original one clearly wasn't helping but again his chest was clear!  That afternoon we had an appointment with the orthopaedic surgeon but I'll fill you in on that later on.

So back home, William now on different medication and still coughing, still vomiting and still very sore bum.  Following day he was much the same but we were due to go to a wedding in Crawley, myself and Kev got ourselves dressed up ready while William was having his nap only to find his fingers bright blue when he woke up which was worrying, and then yet again he vomited and poo'd everywhere. Clearly something really not right so I phoned the hospital and was told to bring him straight down!

So out of the wedding outfits and into the car we go.  End up on Beach ward for the 3rd time in a week and this time see 2 more doctors who again say his chest is clear and advise us to take him off the antibiotics before sending us on our way!

Poor William was due to be the star attraction and turn on the Christmas lights in east preston that day but he was too unwell to go :(

It's now 5 days later and his bottom is much better and not as red and sore as it was but he is still vomiting and now it's not just when he coughs - it seems to be during or after almost every meal which is not good as he is clearly losing weight now. So if things don't change I guess we will be back down to the hospital again in the next few days!

So back to our visit to the orthopaedic surgeon... We were referred there are Williams last hip x-ray showed his right hip was starting to move out of place. This is quite common in children with CP who aren't weight bearing etc. We went to the appointment expecting him to have a quick look and say they would keep an eye on it so we were both rather stunned when he said it was already out and he would need to refer William to The Evelina Children's hospital in London as he is likely to need major surgery to correct it. 

William should have been weight bearing since the age of one and as yu may have gathered from previous blog posts, he hasn't been able to ad his standing frame was unsuitable for him and despite constant requests still hasn't been changed or adapted for him. He has probably only been able to stand 5-6 times in 2 years. It makes me really resent the Physio service at Worthing hospital as it was such a rush to get him a frame and it was very important at that time but as soon as we had one, no one could give two hoots as to whether we could use it.  Seems like they were just covering themselves - well in this case it's backfired hugely hasn't it. 

So now we just wait for the appointment for the Evelina but in the meantime he can't weight bare at all so no kneeling, standing etc just sitting in his chair. Although I think that's all the physios actually want all the children to be able to do round here. 

Anyway, that's all rather grim so how about something to cheer us all up after that???  

William did manage to roll over last week, he did it on his own with me just telling him what to do.  I didn't touch him at all just encouraged him and told him to move his arm / bend his knee etc etc. When he managed it he seemed rather shocked and didn't really know what to do nice he was there!!  He hasn't managed it again on his own yet but that might be because he's been poorly.

I'm sure more has happened in the past few weeks but I seem to have just been faced with vomit, poo and a huge pile of washing so I can't remember much else!

Another update soon!

EEG results???

Well last weeks EEG wasn't great. William was given melatonin to make him go to sleep but William being William he stayed awake throughout!

He did have a seizure whilst the probes were on so we presumed that would record some seizure activity but we have since had a call from the paediatrician with the results. It showed that Williams brain pattern is massively abnormal which we were expecting (doesn't make it any nicer to hear though) but there was no recorded seizure activity on the report including the time when he had what was visible to us as a seizure. Very strange!

So we are booked in for an appointment with the neurologist on Wednesday in the vague hope she may have some answers! Either way we are planning to request another MRI as he's not had one since he was teeny tiny (about 7 days old) and it wasn't very clear. Maybe a clearer MRI will show exactly what damage there is and give some answers?! Probably not but worth a try!

We also had a chair assessment last week but it wasn't very successful. The chair wasn't the right size for William and he hated it - screamed the place down! So we wont be getting one of those! But on the positive side, the lady from wheelchair services came to the appointment and was able to see William in his other chair and was so impressed that she has agreed that he does need another one on a buggy base so he can go out and about in it. So Chailey will hopefully be getting the go ahead to start making a new one soon!

William has been doing very well this week though, he had OT today and his therapist, Jane, was very pleased with him. He seems to be coming along really well in his chair and concentrates so hard to try his best to do what is asked of him. I think with a lot more time and a lot more encouragement he could definately learn a lot. He is a very determined little boy that's for sure!

The last few weeks when Williams been in the bath with his Daddy they've been working on pushing toys away from him and he seems to understand the concept and what is required, he then concentrates so hard to do it and sometimes he manages but other times he concentrates so hard he goes off into one of his "seizures" bless him, I am so proud of him for persevering and not just getting cross whenever he can't get his body to do what he wants.

This week is a little less hectic than last week, only OT, Physio, neurologist, school for parents and three sessions at nursery to fit in along with a photograph for the local paper and 2 Christmas parties! Honestly don't know how I could possibly get a job with all that going on!!

The Facebook auction is now up and running so don't forget to check it out www.Facebook.com/pleasehelpustohelpwilliam.