Williams Operation

Well its been a tough week!  William had his shunt fitted and his Carpal tunnel released in both hands.  The operation took 3 hours in total and he slept for most of the night.  Early on Thursday morning William was sick and slightly dizzy so they took him down for a CT scan.  this showed that whilst the shunt was working well, he had over drained the fluid in his brain, and had developed a small bleed. William needed to spend the next 24 hours laying at  30 degrees so his brain would adjust to the draining. He has been on morphine, anti inflammatory and anti sickness drugs to help him though.   We were finally discharged on Sunday morning and arrived home safely in the afternoon.  William continues to improve and has returned to his cheeky self, whilst he is still recovering.  We would just like to thank everyone for your kind messages and support over the last week. It has kept us going knowing how much support we have.

Thank you!

Update

Hi all,

So here goes,  Tuesday this week William had his new hearing aids fitted. He was very unsure at first as there are a lot of sounds he has never heard before!  He cried a lot and we need to keep trying every few hours to get him used to it! We are sure that once he has overcome the strange new sounds of water running and the cat pounding down the stairs, he will come along leaps and bounds… perseverance!

We also found out on Thursday that William is now booked in at Great Ormond Street for his Carpal tunnel and Shunt operation.  It’s a lot for the little man to be going though! We are hoping to be discharged on Friday, all being well.   The Shunt is to drain the water off his brain, and Carpal tunnel to release the pressure on his median nerve so he does not wake at night in pain.

We will keep you posted on the trials of next week. And would like to thank you all again for your continued support for William.

Love

The Sainsbury’s

xxxx

News Update

A number of factors have fallen into place over the last couple of days so we felt it would be a good idea to give you an update:   

The great news is that William’s Sister (Grace) is a full match for his bone marrow transplant.  She has been a little trouper in having two sets of blood tests to determine compatibility and we are incredibly proud that she is willing to go through the donation process to help her brother.

As William is a complex case, the bone marrow team would like him to under go the transplant at Great Ormond Street, rather than being referred to Manchester.  This may mean that we need to wait until early in the New Year, however it now means that we get to spend a family Christmas together and are now likely to be much closer to home and our daughter Grace.

William was due to have an operation this week that would relieve the pressure from his hydrocephalus (fluid on the brain).  Unfortunately, we have had to put this procedure on hold as he has a virus.  We are hoping that this can be rescheduled within the month. 

And finally… plans are coming together for the Fun Day on November 26^th.  There has already been a brilliant response from friends, family and local businesses and we have every confidence it’s going to be a great event.  You can find more details on the ‘Fun day’ tab. 

Thanks to everyone for your continued support.

   

Thank you!!! & a date for your diaries.

We just wanted to say a huge thank you to all you generous people out there.  The initial response to our campaign has been brilliant and we have been touched by the messages of support, offers of help and advice and donations pledged already.  Thanks also to those that are spreading the word, not only about William but also for raising awareness about Hurlers and MPS.

******We are delighted to announce that we will be running a Family Fun Day on 26th Novemberin Tarring Village High Street at the Young Persons Club.  It's going to be a great event so please put the date in your diary.  If you have any ideas to make this go with a bang then we would love to hear them.******

A special mention to Sharon, Emma, Sue Paul and the team at Laugh and Learn (William's pre-school)  for helping us sort out the venue and activities.

You can find more details of the event via the tab on this site.

Love

The Sainsbury's