Anna is loving school and yesterday, for the first time ever, she travelled to school in her wheelchair in our new car.
Thank you Dragonmobility, for making such an amazing powerchair, thank you motability and Bristol Street Versa for the car, and getting it to us with all the complications along the way and thank you Mr Ryan Galloway, for your emergency mechanical expertise!
Another small but hugely significant step forward. X
Anna was discharged this afternoon, after two weeks in hospital.
We’ve been practising hoisting with Anna while in hospital. After a rocky start, it has all become much easier.
Stevie the clown gave her a full set of balloons to take home with her. This is the smallest one of them!
The clown doctors (Dr couscous and Dr squash) entertained Anna, as usual, getting the best laughs!
Life is still quite difficult, for lots of reasons, but so much better now that Anna is back home.
Anna is still in hospital. She has a deranged liver – that seems to be the actual medical term.
The main concern is that her bilirubin level is too high. My ongoing (rapid but basic) oncology training tells me that bilirubin is a byproduct of red cells breaking down. Too much bilirubin suggests either too many red cells are breaking down or the liver is not able to excrete the byproduct quickly enough. Either way, that’s not good.
In line with that, her red blood cells are low. Her platelets also seem worryingly low.
It’s the same kind of blood situation that we’ve seen before, and has become a concern in the past, so we’re being kept in.
We have a wonderful team of doctors and consultants here at sick kids and as well as treating the symptoms, I know that they are all constantly trying to determine the cause.
Anna, despite all this, is on excellent form. She is bright, alert, chatty and assertive. She is being clear with the nurses, play therapist, physiotherapists, doctors and teachers about her own wishes.
Me – I’m exhausted!