Changes...

Well theres been quite a few changes since my last update so I thought I'd share them with you all...

First off, William had his gastrostomy operation 2 weeks ago now, the operation went really well and he was in Brighton hospital for 2 nights.  Kev was amazing and stayed the night in the hospital so I could go home and sleep.  The gastrostomy tube goes into his stomach just above and to the left of his tummy button.  Its great as we can now feed him through this via a feeding pump and he can also have his medicines through it.

We did have a few teething problems to start with and were very stressed out about the whole thing.  We were discharged on Friday but then ended up in Worthing hospital all day on Saturday as he had an infection.  Then on Sunday we both got a fright when the tube started to poke out a lot further than we'd expected so we rushed him off back to Brighton hospital but it was fine and was something that they say is normal!  Wish they'd told us that before we'd spent all day there!

We've also managed to get William on a milk that is suitable for people with milk intolerances as I have been convinced since he was just a few months that he is milk intolerant. Well it seems I may be right!  He's been on the new milk for less than a week now but the difference in him is huge.  He can now feed without getting pain and having to squirm about and be winded constantly, he has still been sick a couple of times but I put that down to us putting him on his back too soon after a feed.  He isnt choking anymore as he's being tube fed but we are hoping he will continue to have small tasters of foods.

All in all he is a much happier and more comfortable little boy now.  So all that worrying about the gastrostomy wasnt needed, it was the best decision we could have made for him and now we know what we're doing its much less stressful for all of us. 

Here he is chilling on the sofa having his lunch - something he's never been able to do on his own before!

We've also had a new physio take over and she is brilliant.  We've only had one appoinment with her but already she has actually done some physio rather than just sing and adjust equipment which is whats been happening for the last 2 years.  Sandra went through all the things she was doing with William and showed me how to do it an explained why, something I've never had before.  She was so positive about everything from school for parents to brainwave.   It was such a nice change to the constant negativity we face from everyone else.  Our old physio has moved onto a different role in the hospital but to be honest I think for William it was the best thing that could have happened as I now feel confident that he will be getting the therapy he needs in order to be able to maximise his potential.

We went to the opening of We Cycle Too this weekend and we were completely blown away as it was so brilliant.  It is a new part of the Brooklands park and has a great cycle track and bicycles that are suitable for children with various types of disability in order for them to be able to enjoy cycling.  William went on one of the amazing bikes, he cried the whole time but I think thats coz he was having a bad day - I'm sure he'll love it next time!  He also went on the wheelchair accesible swing in the park and he loved that - not sure his buggy was meant to go on it but he enjoyed it!! 

One thing that has happened since our last update that isnt so positive is the results of Williams EEG.  The results showed that the jerks that he has are infact epileptic seizures.  He has up to 15 or so of these a day so that really wasnt good news.  We are seeing the paediatrician again today to discuss changing his medication doses and perhaps putting him on a course of steroids but we need to know about the side effects etc first.  If we could get those under control it would be a big weight off our minds.  We are still carrying his rescue medication with us everywhere we go but it is still a worry as he hasnt had it yet.

William is off to Chestnut Tree House this weekend as we're going to London for a few nights and already he seems excited about it so I'm sure he'll have a fantastic time.  We've got a few days booked in over the summer holidays too which will take the pressure off as I am dreading the holidays when he isnt at the Camelia Botnar nursery.  Such a shame they dont have the funding to remain open all year round as they used to.

On that note, please if you can do pop along to the summer fayre at Camelia Botnar, it is on 8th July 10am-2pm.  The nursery is fully charity funded and is the only one in our area that is for disabled children and children with special educational needs so if you know anyone or if the company you work for is looking for a charity to support please tell them about this one!

Overwhelmed by the generosity...

Thought it was about time I did another update and wanted to start off with the amazing news from the facebook auction.  We were absolutely astounded by everyones generosity and kindness and the way people got involved to spread the word about the auction and we are so so pleased to tell you all that although we don't have all the money in yet, the grand total at the moment is looking to be in the region of £1900!

That is just incredible, we set out to raise £525 to pay for Williams first session at The Brainwave Centre and this total will not only pay for that but will leave us with £1400 to cover his follow up sessions which are in the region of £280 each so about 5 sessions or 3 years worth of therapy in total!  AMAZING!

So we want to say a huge thank you to every single person who donated to the auction, made a donation to the account, placed a bid, won an item, spread the word about the auction and just helped us along the way.  Without you it would not have happened so we are very very grateful.  We hope we can return the favour sometime by helping someone else who needs it.

The Brainwave centre appointment is at the end of July and we are really looking forward to it, a few people we know have been recently and have come back with really positive feedback so we are really keen.  Unfortunately some of the 'professionals' don't seem to back it which is a shame as they probably don't have any real experience of how it works, but that doesn't stop them from sharing their negative opinions does it - one day I'm sure we'll meet a professional who can recommend something positive rather than turn every therapist or therapy other than themselves into something negative!  Do they not think as parents we spend a lot of time researching things or are they under the impression that we just jump into things without thinking?!  Sorry rant over - just makes me mad!!

William is getting on really well in general and is constantly happy and smiling at the mo which is great.  He seems to be much more alert and is so interested in the world around him at the moment which is brilliant.

Eating wise he is still only being fed the high calorie milk which he is having via a syringe and that is working at the moment but he is still being sick occasionally.  We had an appointment about his gastrostomy last week and he is now booked in to have the operation on June 15th which is only a few weeks away.  The gastrostomy is definitely going to make a massive difference to him and take the stress off with his eating and medications but it is very scary and involves an operation and hospital stay which is not a nice prospect.

We also had a really good seating assessment at Chailey this week.  They tried him in a few different seats and he couldn't tolerate them so they decided to try a moulded seat.  It worked by getting William into a comfy seating position that he could tolerate in a special beanbag, once they'd got him comfy and he seemed happy they sucked all the air out of it so the beans formed a rigid cast.  It was amazing, he sat in the cast for over 1/2 an hour with no straps.  he had a special headrest which went around his neck like those cushions you have on an aeroplane and he didn't push back at all.  He was lovely to watch as he seemed to be really surprise and pleased with himself for sitting on his own without an adult having to help him - very proud of him!

The engineer will now use the beanbag seat to make a cast from which a foam seat can be carved out for William.  That will then be fitted into his chair and if it is successful can also be put onto a buggy or wheelchair base.  It was so nice to have such a positive appointment and come out of there with the feeling that finally we might be getting somewhere!  hopefully it wont take too long before William can try it out!

School for parents is going really well too, Williams tolerance of things is just increasing week by week and he seems to know the task series now, he knows what is going to happen next and what is expected of him. Unfortunately like any other 2 year old he doesn't always want to play along!! 

So all in all a positive update - things are going well at the moment - long may it continue!

An Update

Thought it was time for an update...

William is still not tolerating solid food at all and so far has only managed to go 2 days without throwing up.  We are still feeding him via a syringe and have been flavouring the high energy feed with milkshake powder to make it a bit more interesting (flavoured milk has been ordered!). 

Despite this he is still so so happy!  He's spent what feels like most of the month at The Chestnut Tree who have been amazing!  He is there now as they were brilliant and offered us 2 extra nights so we've had a nice bit of respite.  He absolutely loves it there spending time in the sensory room and going for trips up the lane to see the calves.  His little face lights up when we get there and its lovely when he gets really excited to see us when we go back to collect him!

We went back to School for parents last week for the first time since before easter.  William was amazing, he seemed to know why we were there and settled into work (cleverly disguised as play) straight away.  It was the best session hes had there so far.  He managed to tolerate sitting straight away and made no fuss about sitting on the stool which is a first!

But the best thing was when he was lying on his back, he was so interested in everything and really tried to do what was asked of him.  He managed to hold a peice of silver paper in both hands and we were encouranging him to bring it over his face and play peek-a-boo and he didnt need any help to do it, I wa saying ready stead go and he was pulling it down to see me and then getting a big smile on his face as he knew he'd done well!  Brilliant! 

Then he had to hold a small hoop with both hands and managed to keep hold of it for a good few minutes which was impressive in itself but not as impressive as this... Chris the group leader had a stick and was collecting the hoops on it, he saw his friend Tom put the hoop on the stick and when it came to his turn he immediately let go with one hand and pushed  the hoop towards chris and straight onto the stick.  I was gob-smacked and so was Chris!

Definately the best session so far!

He's now had his sleep system delivered but the delivery man knew nothing about setting it up so its still in its box in our hall.  Well we've only waiting about a year since trying the first system so why not let us wait a bit longer hey!

And still no news on adaptions for his chair despite chasing Chailey up numerous times, hopefuly things will happen soon as although we manage with him sitting on our laps at home he is starting to get a bit tall for his buggy so we're going to need something for out and about soon!

The auction is going really well so far and loads of lovely things have been offered so hopefully once bidding opens on May 14th we may have a lot of interest, we were even in our local paper this week trying to promote it...

Bidding on the general auction is all on our facebook page www.facebook.com/pleasehelpustohelpwilliam if you look at the photo album just find something you want to bid on and leave a comment on the photo with your bid.  Bidding is open 8am 14th may until 6pm 21st May. 

We also have a special auction on where you can bid on a holiday to Turkey, Williams great-uncle Tony has donated a 5 night stay in his penthouse in Instanbul along with flights with Easyjet.  Bidding started at £500 and we have had a bid but you can bid until 14th May 6pm.  Full details on our facebook page.

I am so overwhelmed by how generous everyone has been so a massive thank you to everyone who has donated something for the auction, spread the word about it and promoted our facebook page.  One lovely lady even wrote a blog about us on her company website, you can read it here Gumigem Blog

I'm now off to collect William from The Chestnut Tree,

Thanks for reading!