William and his best friend get cake decorating

Last week, William invited his very special best friend, alright girlfriend and the girl he plans to marry on his 16th birthday, home to play and ice cakes. Both William and Sana have disabilities that affect their hands. Wills has mild cerebral palsy and Sana has Distal Arthrogryposis, a rare condition that causes complex needs and, in Sana's case, has mainly affected her hands which have a deformity, are weak and have no sensation.

Both Sana and Wills struggle to use their hands for anything fine so we were really excited to try out some of Lakeland's new cake decorating range.

We tried out 'Snap and Swirl' icing - a ready made frosting, perfect for cupcakes, that comes it it's own icing bag. We also tried Magic Melting icing and Sugar Dough.

Sana and Wills were really impressed with the Snap and Swirl Icing. Both of them could do it by themselves and they loved the vanilla and chocolate flavours. They both had fun icing their cake and then licking it all off before icing some more. We then had fun heating up some blackcurrent Magic Melting icing and pouring it over gingerbread stars. The tangy flavour worked really well and it was easy to get good coverage over the biscuits. They are all ready for the Christmas Tree now (unless they've been discovered and eaten!)

William and Sana didn't enjoy the Sugardough as much as they found it hard to use independently and got frustrated with it. It is quite hard in texture and takes a lot of warming up (in clean hands) to mould. It would be great fun for children who have full use of their hands as they can play with it like plasticine and then eat their creations or use them for cake decorations. Ellie and Hope had fun using it when they decorated William's third transplant birthday cakes on Sunday.  They also had fun with the icing bags, as did Sana's mum and I!

The Lakeland cake decorating range has some fantastic things and their Christmas range is wonderful. This was one of my favourite shows in  'Christmas in July' season. We are really looking forward to trying this out next. It will be something the whole family will do together when we start really getting our festive spirit up and getting ready for Christmas. Watch this space to see how we get on with it...

A Special Third Birthday Party

We're back!! After a break while I've been picking up with things after being unwell. I promise we won't go away for so long again!

There is a lot of news to share. The biggest being that William, with a lot of help from Oliver, celebrated his third 'transplant birthday' yesterday.

This has been his best year of health yet so we really had a lot to celebrate. Of course, it's a bitter sweet day as we think of our wonderful donor family and their grief and sadness as they remember their daughter. We got the call to say a donor had been found for William on the evening of 19th November and his transplant took place in the early morning of 20th. This enables us to dedicate 19th to remembering and giving thanks for that special gift before we celebrate William's life on 20th.

Every year, we light a candle for William's donor. This candle is also lit on William's birthday and at Christmas and other special occasions where we feel we should commemorate the girl and her family who made it possible for William to be alive.

One of the things I was really celebrating this year is that William is eating! Crisps with every meal and a very restricted diet but eating anything is a huge achievement. We are about to start working with a dietician who specialises in Autism to get his diet more varied but he has enough calories to mean he can wean off his overnight feed and is down to just two nights on feed now. He's off to Birmingham Children's Hospital for his annual post-transplant review in a couple of weeks so, you never know, they could say he can drop the last two feeds by Christmas. Thankfully, he needs the crisps to replace the salt content in his stoma output so the transplant dietician is happy for him to eat four bags a day!

William is keen to try new foods and does give them a go but then doesn't like the texture in his mouth. He tried the cakes his sisters made him and some peanuts and pringles at his special transplant birthday party lunch. He didn't like them though and went back to his Walker's salt and vinegar crisps, strawberry squashem yogurt, gingerbread biscuit and vanilla milkshake that he as at every single meal! Snacks are milkshake and half a packet of crisps.

We all enjoyed celebrating together. There is always a lot to talk about and remember about that day three years ago too. We had a real roller coaster ride after William's transplant and we are never really sure what's around the corner. We do know that we have his amazing donor to thank for every day we have with him. 

Oliver wore himself out with all the excitement.

There is a lovely piece about William and Oliver in the current edition of 'Pick Me Up' and they are also in the new issue of Crufts' magazine.