It's been a busy time for Wills.
Last week, he was up in Birmingham for his annual post-transplant MOT. His dad took him this year as it's a lot easier than me juggling oxygen etc. This was a really strange experience for me as I've never not been with him for his hospital visits. It was lovely to have some time with the girls and we made the most of it with shopping and eating in our favourite local Chinese restaurant - William really hates eating out. It is really stressful with him because he has a heightened sense of smell due to his Asperger's Syndrome. I did find it hard not being with him and missed the contact with his doctors and the rest of his team.
William's MOT consists of an endoscopy (which involves a 'special sleep' which he hates), dietician review, surgical review, blood tests, psychology review and a discussion with key members of the team,
William's tests all went really well but he has lost a bit of weight with weaning off his overnight tube feed.
I've talked before about selective eating and autism and I've learned since just how huge a problem this is for many families. William currently eats Walkers (and Walkers only) salt and vinegar crisps, strawberry 'squash ams' yogurts (and no other variations) and gingerbread or chocolate chip cookies - he is a bit braver with trying different biscuits! He'll also eat any vanilla ice-cream and pints and pints of vanilla milkshake (which is a limited edition, now over and we have a few bottles of the armfuls we grabbed as soon as we realised the shelf time was limited) - oh, and Advent Calendar chocolate! It's a huge step on the nothing he hate this time last year but not exactly a healthy diet. This matters more for Wills than other children with his medical issues and we can't just trust the 'they will get enough from it and won't starve if you let them have what they want' philosophy. So, we have to stay at two overnight feeds a week rather than wean off in January and we have to give Wills vitamin and mineral supplements on the days he doesn't have the feed. He would never swallow a tablet so this will have to be a power weighed and reconstituted and then fed down his tube. In the grand scheme of things, this is really tiny but I was hoping he'd be able to wean off the tube. He may never get completely free of tube supplements because he has such a unique mix of autistic feeding issues and his rare medical complications.
The other difficult news is that William probably hasn't grown out of his asthma as we thought he had. He has been coughing for weeks and we, and his speech and language therapist, thought it was his reflux again and that he had outgrown his Nissen Fundoplication. His team think not and that it is asthma. So, we are waiting for a referral back to chest clinic for him. He doesn't mind at all - he loves the taste of ventolin - so much that I have to keep all the inhalers out of reach or he'll puff on them just for the taste. Strange child - I'd rather have a nice cake than an inhaler anyway!
Friday, 2 December 2011
This time of year is always emotional for us. On Sunday, William is off to Birmingham with his Dad for his post transplant annual review. I'm expecting nothing but good news. In October, Hope, with her friend Abby, Alexandra Burke and the Channel 4 series 'Battlefront' set a world record for the number of people to sign the organ donor register in an hour. I told the story of the incredible day here. Hope's TV programme is on this Sunday at 8.50am Channel 4 (you can also watch it on plus one and Ch4 on demand).
Here is a snippet of the show, featuring the whole of Alexandra Burke's amazing and moving performance of Hallelujah and a very emotional little speech from William giving thanks to his donor, 'Amy'. I cry every time I watch it and I'm so immensely proud of all three of my wonderful children and so thankful to our fantastic donor family for my family!
Please watch on Sunday and, if you are not already on the organ donor register please do it now. You can find out all you need to know about the register and how to sign here.