I’ve had a fairly uneventful couple of weeks so thought I’d wait to give you my news!
The good news is my billarubin has dropped below 150 for the first time in a very long time! Lots of people have commented on how I look less yellow!
On Monday I finally had my 5th central line as my last one became a bit pulled so it needed changing to reduce the risk of infection. Hopefully this one will last longer!!
I’ve been doing well and getting stronger and enjoying lots of playing! I’ve just discovered my tongue so my new favourite game is to stick my tongue out!
I’ve also gone up to 11ml per hour on my milk feeds and the doctors have said I can have a tiny bit of baby rice too. Considering it’s made with my yucky modular feed it’s not too bad, I like getting it on my hands and trying to get it in Mummy’s hair!
Now my feeds have gone up the doctors are going to try to start reducing my PN so I can have a break from it as this will help my liver and also mean I can go to that outside place! I’ve not been able to go out since I’ve been in Birmingham and Mummy and Daddy are desperate to take me out!
The physios came to see me this week too and are happy with my progress. They’ve given me a cool chair and table too as I’m too big for my swingy chair now! One of the play specialists has also made Ella a special princess story to explain what will happen when I have my transplant. Sleeping Beauty gets a new liver and bowel, it’s very clever….I’m still trying my best to get out of this transplant malarkey though and do it by myself!!
Finally, thank you to the lovely people at Alton Towers for treating my big sister to a break at Splash Landings Hotel last weekend. Mummy and Daddy surprised Ella and she had a great time at the hotel and water park and thought it was a great little holiday! It sounds brilliant, hopefully I can go one day and I won’t get scared of the big flume like my wimpy sister!
Speak to you soon!