Day + 80 and Feeling Good
It’s been about one month since our last update and we’re pleased to report that Ellie is doing really well and feeling pretty good. During the last hospital stay where Ellie spiked a temp and we ran her into emergency, no infections were detected in her line and we were released after about a week of antibiotics. Since then, it’s been relatively smooth sailing.
Ellie is now attending weekly clinic appointments for bloods and check-ups and this will probably continue for a few more months before her central line is removed. This is much less of an impost than having to go in three times per week as we were doing before her last temp, and it means that we all have a much more normal routine.
We have been weaning back several medications over the last few months and Ellie is now completely off the Prednisolone steroids which is a big milestone. The steroids were responsible for her uncontrollable appetite (she has put on around 6kg since diagnosis and has the steroid chipmunk cheeks), significant mood swings, and muscle atrophy. Being off the steroids means her moods have stabilised and her appetite is back to normal. I think she’s starting to feel a little more normal too.
She is still taking Cyclosporin, Posaconazole, Bactrim, Amlodipine, Omeprazole, Magnesium, and Ondansetron.
Ellie is starting to get her energy and strength back, and a key indicator is that she can usually get up and down the stairs by herself. She’s also interacting more and really enjoying Annabelle’s company – they’re like best friends again!
We also love the fact that she has enough energy for full days of school via the MissingSchools robot. The robot has been amazing for her, and she participates in all her classes, does all her school work, and is able to interact with her friends on a daily basis.
We know that we have a long way to go, but for now, Ellie is improving every week and getting closer to feeling normal. She can’t wait for Summer, with hope that her central line will come out in time for her to go swimming at the beach again!
PC[...]
