I’ve had a good couple of weeks and thankfully, for Mummy and Daddy, haven’t pulled my NJ tube out again.
About a month ago I started getting a rash which Dr Hartley was a bit worried about and my steroids were increased and it went away. My blood pressure has gone a bit high though so my steroids have been reduced a bit and my rash is back with a vengeance. Dr Hartley thinks its GVHD which is graft vs host disease which is my donor organs attacking me. Naughty organs! I’m going to have a skin biopsy soon and am waiting for a referral at a specialist centre. I’m probably going to have a treatment called ECP which is where I have my blood taken through dialysis and the white cells zapped somehow. The bad side is I’ll need a new line for this and I’ll probably have to go to Rotherham almost every week for a year! Just when Mummy and Daddy thought most of the travelling was behind them!
Otherwise I’ve been doing well. I’m on a new special feed as my potassium levels were high and I was getting a bit too chunky too. Daddy says I need to start crawling and lose some chub. Mummy convinced the hospital to let me start having some feed down my NG so I can hopefully get rid of my NJ tube so I’m now having 5ml an hour down my NG which I’m tolerating fine..its just a pain having two pumps and tubes attached! I have a sippy cup too that I love, although I tend to shake water down myself! This week I’ve tried some jelly which I liked, and Mummy tried to make me have some avocado but I spat it out. Why eat when I get fed through a tube?! Mummy and Daddy keep telling me I need to…and then people won’t stare at my tubes either.
I’m sitting up lots more now and don’t mind tummy time too much either and love Ella coming to play with me as she’s really silly.
At home it’s been a bit mad as Mummy and Daddy are having some work done to the new house. The plumbers think I’m funny because I can sleep even when they’re making lots of noise! I’ve told Mummy and Daddy to keep my artex ceiling as I like looking at it and talking to it.
Speaking of talking, I’m being very cheeky at the moment and only say “Dadda” now. Mummy tries to get me to say “Mamma” but I just say “Dadda” back to her and laugh at her!!
Right, I’m off for a walk in the sunshine now!