Hospitalisations cause distress to all children but William is already fixed on his next scheduled procedures in November. Again, this is something we are learning to deal with and things are a lot easier than they were.
The biggest problem we face as a result of the combination of a form of autism and such a sever bowel disorder is eating. William wasn't allowed to eat for the first four years of his life and was dependent on an intravenous feed, delivered straight into his heart and into his bloodstream (TPN). He didn't learn the skills he needed to bite, chew and swallow. After his transplant, he could eat most things. A lot of children who have never eaten before find this a challenge but most can't wait to get stuck into food at last and overcome it. Not William! William is perfectly happy to have a tube feed. It took ages to get him to have anything but now we have the problem a lot of children with autism share. William is more than happy to live off a very select few, sometimes just one, one chosen item of food at a time. For a long time it was strawberry milk shake only. He now drinks strawberry or vanilla and eats a few bits and pieces, enough to come off tube feeds in the day. However, his selectiveness means he doesn't have the variety and balanced diet to come off an overnight tube feed. He'll sometimes eat digestive biscuits, sometimes gingerbread men, for a few weeks it was 'Wotzits' which was fantastic as it was the first savoury food he would eat. Unfortunately, the change of routine he faced when he went to the hospice at the weekend has put him off those. At the moment he'll have chocolate buttons. All of this is fantastic progress for him but it's so slow.
For many children, it's ok for them to be so selective and they don't have the tube, especially if they drink milk. William's needs as a transplant recipient mean we have to be more careful with diet and the feed will stay until he eats a balanced selection of food. His unique situation means that we don't really know how best to get him to take this and there are no previous examples of children to inform us and our teams what has worked before. If anyone has any hints on selective eating then please do let me know and we'll give it a go.
What William really does enjoy is cooking. Cooking is fantastic for all children, especially those with feeding issues. I always hope he'll eat what we've cooked and I'm sure one day he will. Cooking and food are so important for Wills and so many children that I'm going to dedicate Thursday's blog entries to all things food related.
On Monday, Wills and I made 'Summer Apple and Strawberry Pies.' We did cheat and bought our pastry. I'd have loved to have made it but, as I'm sure most readers are, I'm very keen on anything that makes things quicker and easier in the kitchen. I'll talk a lot about that in blogs to come and have been keeping a particular watch for things that will help us cheat at Christmas when I've been looking round the Christmas Previews over the last few weeks. I've also been looking out for things that children who have difficulties with motor control and using their hands would be able use easily in the kitchen.
Lakeland have some fantastic things for children Christmas and I'll be featuring some of those in future posts. One of the first things that caught my eye at their preview last week was an amazing little apple pie mould. I was thrilled to find one in my goody bag and couldn't wait to try it out with Wills.
|moulding and sealing it all together|
|getting them ready for the overn|
William and I have made pies before and, although they tasted great, they weren't the most tidy of things. Wills has very poor fine motor control struggles with a lot of cutters, leaving half the pastry or biscuit on the work surface. He's a perfectionist and this just makes him frustrated and ready to give up, With this mould you can cut two large shaped pieces with the outside, then put them into the mould, load it with filling and close and press. Another little cutter is included to give you a small apple for decoration. Wills was able to do all of that himself the results looked the way he anticipated they would. He wanted to keep going until the pastry ran out which was great because he was interacting with food and also away from his current obsession - Horrible Histories - for half an hour. Our pies were lovely hot from the oven with ice-cream. Wills smelled one but wouldn't eat it but there's always next time!
Making our 'Summer Apple Pies' is really quick and easy peasy. We used frozen short-crust pastry and just filled them with stewed apples and strawberries.
If you have anything you'd like to share or would like us to cover about eating then please get in touch. We'd also love to share any recipes that go down especially well with your family.
Looking at those pictures I can see Wills needs a haircut...and that's a whole new post!