Hi, Still going well.
Anabelle is still having the weekly visit by the community team, having her dressings changed, bloods taken and blood pressure monitored.
We last went up to Great Ormond Street Hospital on the 28th November. The doctors have produced a schedule to wean Anabelle off the Ciclosporin. This is good news as she is now getting really hairy. Her T cells have gone from 70 to 150 which we are really pleased about. Her neutrophil levels are also really good. As I understand it (I could be wrong and often am!!!) the T cells need to be about 300 to come out of semi isolation. Now that the Ciclosporin is being reduced her T cell levels should keep on rising. She has also now come off her blood pressure tablets and her current medication protocol runs like this
7.00 am Ciclosporin, Aciclovir, Posaconazole,
12.00 Penicillin, Aciclovir, Posaconazole, Magnesium
5.00 pm Ciclosporin, Aciclovir
10.00 pm Peniclilin, Aciclovir, Posaconazole, Magnesium
In addition to this she also has Septrim on Mondays and Tuesday twice a day with Calcium Folinate on a Friday.
She still refuses to take any form of fluid and has 480mm milk fed through the pump overnight via her peg and two lots of 200mm sterile water through out the day.


A nice picture she will thank us for when she is older!!
 

One of the few places we can take Anabelle. It could be worse.

The Semi isolation can still be pretty monotonous although the walks along Southsea Sea front can provide a welcome break. We are next back at Great Ormond Street on the 19th December and hopefully her T cells will be where we would like to see them. That would make a great Christmas present!!!