Hip hip not hooray!

Well it's been a hectic week or so and there's a few bits of news to report about William. 

First off we went up to The Evalina Childrens hospital in london last week about Williams hips. They were really good up there, he had another x-ray and we were seen by 2 surgeons and a physiotherapist.  The result of the appointment is that as suspected, William does have to have major surgery on his hips. His right hip is already a problem in that it is coming out of the socket as it's not developed properly as William doesn't weight bear but we hadn't expected the surgeon to want to operate on his left as well. Apparently it is better if they do both at the same time. So sometime next year he will have the op, we don't know when but as he is not in any discomfort with it they are in no hurry and in the meantime we can continue as normal. It is quite major surgery and I'm not entirely clued up on the ins and outs but from what I gathered from the doctor, they will be cutting away some bone, moving some muscles and then putting it all back together. So William will be in hospital for at least 5 nights with the first one after the op being in intensive care as there is a risk of chest infection afterwards. All very scary and not very nice to look forward to at all. :(

Other news and somewhat better is that we have asked to be referred to the trike clinic at Chailey heritage. They will try William in some special trikes and then make any adaptions that need to be done so that he can go out on his trike!! Sounds fab! We will have to buy the trike but Chailey will do any adaptions that need to be done so that is good. So once weve been to the clinic and chosen something for him we will probably have to start fundraising to pay for it!! 

William has been very interested in the Olympics this week!! He's been loving waving his union flag in support of team GB, there's a video on his Facebook page if you want to see him being amazing and not only managing to hold the flag but also wave it when I asked him to!  Very clever boy!!

Lots of phone calls to wheelchair services over the last few weeks and guess what... Still no wheelchair!! I wont bore you with the ins and outs but needless to say, their service is still shocking!!

That's all for now, keep you updated!!

Finally a catch up!

Firstly, sorry for it being so long since my last post, time just flies when things are going well!  And trust me, they are going well!  As it’s been so long since the last update I am not entirely sure where to begin but I will try my best to fill you in on everything!

So back in March I posted that William had been poorly with a chest infection, well in April he got another one which resulted in him being admitted to the children’s ward for 2 nights.  He was very poorly and the anti-biotics once again made him worse to the point that he couldn’t keep any of his feeds down and was sick quite a lot.  So as he was starting to lose weight we decided to try him on solid food rather than keep pumping him full of the milk that was just coming straight back out - my logic was that solid (pureed) food was heavier so would stay down for longer! Anyway, it worked and we ended up going home the following day.

I wasn’t brave enough to try him back on the milk feeds as he seemed to be doing so well with the pureed foods without being sick. After a couple of days of pureed foods and no milk feeds we noticed that William hadn’t had any seizures and then realised that he'd not had once since the day we took him off the milk.  This continued for a few more days and a few more days after that, it is now July 2nd and Williams not had a seizure since April 30th - the last time he had the milk feed!

Now I am sure it was the milk that was causing the problems, after all I have been convinced he's been in pain from milk for the last 3 years and have mentioned it to the doctors since he was a baby.  When you are in pain your seizure threshold is much lower and if you are susceptible to seizures anyway then it’s obviously only going to make you more likely to have one!  He may be allergic and that may have been the reaction it caused but the doctors think it unlikely and the only way to know for sure is to put him back on the milk which is NOT going to happen!  So now William just has pureed meals, a dairy free diet and we use his gastrostomy for water and medication.

But not only have his seizures stopped, he is a completely different little boy.  He is eating so well, hardly ever gagging compared to before when he would struggle with every mouthful he can now eat a full meal and pudding in one sitting no problem.  

His tone is completely different, he’s much more floppy than he used to be which is good and bad as it means he has less tone in his muscles to help his to try to sit etc. but isn’t extending so much and getting so stiff.  He is far happier in his chair, sleeps for longer and is much easier to cuddle and play with now!  All because of some stupid milk!?!

Because he is now much happier in his own body and more comfy, we have finally been able to order him a wheelchair - a standard buggy type one (called a Snappi) which we hope to have in the next few weeks but knowing what our local wheelchair service is like it is probably more like months!

Something else very exciting happened to William in May, he met the one and only Simon Cowell at Chestnut Tree House!  Yes this photo is real, he may look like a wax work but it really was Simon and he was very nice.  William loved him and wanted to go home in his helicopter!

  

 William also now has glasses!  He looks very intelligent in them and actually likes to wear them so they must be making a difference to him.  We’ve noticed that since he has got them he is much more observant even when he’s not wearing them, follows us around the room and looks around being very nosey! 

We went on holiday to Lanzarote last month and William loved it.  We flew with Monarch who were great, they provided a special chair on the plane for William which he managed to sit in for the whole flight and the assistance at the airports was great as well.  The holiday was brilliant, William was so well behaved it was great.  He loved sunbathing and had a great time in the evenings eating in the restaurants and trying our desserts - on one occasion he ate most of it, cheeky monkey!

He also has a splint on his hand to try and help him to turn it the right way as he was always turning it back on himself, this is a very new thing so as yet we don’t know how well it will work but it seemed to make a difference within the first 5 minutes!

We have been for a lycra fitting and are just waiting on a few last minute adjustments so that William will have a new lycra suit.  Last time he had one he was very stiff and it just increased his tone but now he is more floppy we hope it will increase his tone for the better!  He had a fitting last week and as soon as it was on he was lying much straighter and happier so fingers crossed.  It’s just a pain when we have to change his nappy etc. as it’s so tight!

Talking of nappies - William has started to use the toilet!!  Amazing!!  So we are fitting him his own loo in his new bathroom and waiting on a special toilet seat from the equipment service!

Williams also now had his gastrostomy tube changed from a peg - where the tube is hanging from the site permanently - to a mini button - where there is a small plug which looks like something off a lilo which you plug a tube into when you need it.  It is much more comfy for William as it’s smaller and there’s not a tube in the way all the time!  It was such a quick procedure as well; we were in the hospital by 7.30am but home before lunch the same day!

Williams at nursery now which is going really well.  He seems to love being with the other children so much.  He now goes there 3 times a week but we hope to increase that after the summer holidays!  And then next year he will be starting school - how time flies - so we are now starting on his statementing process which all seems very complicated and long winded!

This is William painting at nursery which he seems love!

Williams new bedroom and bathroom are coming along very well, we are at the stage where it will be plastered next week and then hopefuls should be finished and he will be moved in there by Christmas as he is getting so heavy to carry up and down the stairs all the time now.

We are still waiting on a standing frame assessment which is finally booked for this month so hopefully at some stage in the next few months william will finally be standing!  We've also got an appointment about his hips this month, only been waiting since October!!  Williams right leg is quite noticably shorter than his left now so there is definately a problem with his hip, I'd hope it would be correctable without surgery but I somehow doubt it :(

Best thing of all in the last few months is that William is happy and he laughs every day at the smallest things, noises mainly! 

We are just back from a weekend in Norfolk where we were at a family wedding, William had a lovely time and was very good, the only bit he didnt like was the DJ but wedding DJs are always a bit dodgy arent they!  He wore a lovely suit to match his Daddy, didnt they look smart!!

Unfortunately, William is poorly again today, hopefully it won't become serious like usual but theres a lot of coughing going on so we are off to get it checked out by a doctor! Must be all the partying!!

So I think thats us up to date now but if I think of anything else I will update this again and hopefully it wont be so long until the next blog update next time!  Thanks for reading! x

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!