Christmas Day 2008 – We all got up very early today and Dylan was very excited! When mummy took me downstairs there were lots of pretty boxes under our Christmas Tree and Dylan said that Santa had been while we were asleep. We had to wait a little while for daddy to wake up and then Dylan started tearing the pretty paper off all the boxes that had his name on them. Mummy and daddy helped me tear the paper off my boxes and when we’d finished me and Dylan had lots of new toys to play with. It was all very exciting!
Mummy and daddy tidied up while I played in my new chair with wheels on it and then Dylan found a note from Santa to me and him. Dylan had left some chocolates out for Santa and some nuts for his reindeer and they’d all gone so they must have liked them! Daddy found some shells from the nuts outside where Santa’s reindeer had dropped them while they were eating them on the roof…
While Dylan played with some of his new toys I had my breakfast and then had some milk too. I’m getting a lot better at drinking all my milk and am now up to 140mls and usually drink all of it over an hour without being sick at all. Mummy and daddy think that the tube in my nose was making me sick because I’ve kept much more of my milk in my tummy since I pulled it out a couple of weeks ago. I’m even putting weight on and now weigh a much healthier 12lbs 6oz’s!
I’ve even stopped a lot of my medicines and only have warfarin every day now. I’m a good girl and open my mouth when I see daddy bring it to me in a syringe. I drink it all and sometimes want more even when I’ve finished my dose!
After I’d finished my bot bot I went upstairs for a little nap and mummy and daddy started getting things ready for nanny, granddad and uncle Justin to come round for dinner. Daddy was busy preparing the dinner and mummy played with me and Dylan once I’d woken up.
When nanny and granddad and uncle Justin came round me and Dylan had some more presents (I think Santa must’ve got a bit lost!) and we had fun ripping more paper! Mummy played with me and Dylan while daddy was busy cooking dinner. Every now and then daddy came out of the kitchen and we had some cuddles and played a little bit.
When dinner was ready everybody sat at the table and I was very interested in what they were all eating. It looked and smelled much tastier than my bot bot! Unfortunately I didn’t get to try any because I still can’t quite chew my food. Daddy had tried giving me some lumpy food earlier in the week and I nearly choked! Daddy kept chomping his chops while I was eating it, which I thought was funny, but I didn’t get what he was trying to tell me. Although I’ve got lots of teeth now I still don’t use them unless I’m biting on my bot bot.
After dinner I had cuddles with everybody and then had my lunch and then had another nap. When I got up again everybody had gone so me, mummy and daddy had lots of fun playing with my new toys.
Christmas Day has been great fun and I’ve really enjoyed being home instead of at hospital. I’ve not been to the hospital as much lately because my INR levels are stable. As long as I take my warfarin every day I won’t need to be stabbed as much as I was when I first came home. I now only have to go to the hospital once every 2 weeks. I still don’t like it but I’m very brave and don’t cry for too long and even laugh at mummy and daddy when they take me home!
2008 has been a very difficult year for me, mummy, daddy and Dylan and all my family. We’ve all gone through a lot of heartache and experienced highs and lows. But, thanks to some very special people at Great Ormond Street Hospital, The Norfolk and Norwich Hospital and the Children’s Acute Transport Service (CATS), I’ve been able to spend Christmas with my family and am starting to grow and thrive. The pain in my chest has gone and I’m looking forward to going from strength to strength in 2009.
Merry Christmas and Happy New Year everybody!