Tuesday 21st December- Hello Father Christmas

Mummy steadily kept further away from me today because she is full of cold. I didn’t help matters because she didn’t get any sleep sat up all night worrying about me. I had a very uncomfortable night and I grizzled and cried and tossed and turned. I also had a few startle fits which I haven’t done for ages, Mummy wondered if my brain medication needs increasing, she spoke to Doctor Burns after I was weighed – now a porky 5.26kg/11lb 10oz and I will have a higher dose now.

Hospital obviously agrees with me as I am putting on weight really well.

As my positioning is very important, Emma found me a funny donut thingy to support my head this morning – lucky its not a real one else Daddy would eat it – “Doh nuts, is there anything they cant do?”

By the time Daddy wandered back down from one of the treatment rooms where he has been allowed to stay, she was feeling really grotty and really didn’t want to sit with me any longer. Even Daddy agreed that I was very miserable with the tube in my nose and it was only when I threw up my breakfast that everyone decided that I had had a good go at it but that it needed to come out. When it did it was all blocked and crusted up with dried bogies and removing it made my nostrils bleed – horrible.

I managed to pull my gastric tube out too so they let me have my nose back for a few hours, it was lovely, I breathed all by myself without oxygen.

Eventually though it was time for lunch and because I cant take my bottle very well I had to have a new tube replaced.

I had a visit from Dr Helen who is one of the Junior Doctors and has always been very nice to me. She said she hasn’t had chance to say hello for a while as she has been working on other wards, she likes to keep an eye on me as she was the first doctor to look after me on the day after I was born and spotted that I might not be very well. (She had made sure I was looked after and sent me too the Special Care Baby Unit)

I met Father Christmas today, he must have come early as I’m sure there are still a few more doors on my advent calendar, I’m not complaining though as Mummy says he is usually so busy he doesn’t have time too stop and see children but he stayed around chatting and  I had my photo taken with him.  A lady called Annie wants to use the picture to write in an article about me and my illness to highlight it to people, Mummy and Daddy want her to tell everyone how wonderful all the staff are here at Ward 17 are and how the Hospital is really looking after us. She also wants people to be aware of the local charity CLIMB who support families living with inherited metabolic diseases, because hopefully it will help other people.

My great Uncle Trevor and Aunt Thelma came to see me for the first time too – I got a snowman toy to cuddle and some bright pretty picture cards from Cousin Tracy. They said I was very beautiful -  I could get a big head you know! (although really I have already as, with my large fontanells!!) Aunty Thelma makes lovely cakes – fancy not bringing one! ;-)