At least I hope that is what you have been assuming in the absence of new posts! It is true – things are going well and we have been busy, busy, busy. I have been plugging away at my book – making good progress – and Em has been plugging away at therapy – also making good progress.
Since I last posted about the Midodrine not working, a funny thing happened… It started working. One minute I was annoyed by it and thought it a lost cause, then the next thing I knew, Em was seeming to have more energy and waking up in the morning (9:30, 10:00!) on her own.
Over the past few weeks, Em undertook a major clean up of her room – a room that she hadn’t done anything with for almost 3 years, so was a total wreck. Somehow the years between 10 and 14 were lost to chronic illness and suddenly here she is a young lady. Apparently, having Polly Pockets and Barbies laying around just won’t do when you are 14. So, we totally emptied her room, sorted through her stuff, finally set up the new bed we bought a couple years ago (that has been sitting in the box unused) and she is now on her way to having her own beautiful room – done to her 14 year old specifications and not mine for her as a baby. We still need to paint, get a couple pieces of furniture and do a few Pinterest inspired projects to call it done, but she is very pleased – with the room and with herself.
Anyway, it was in the midst of this huge project that I suddenly realized that she was… better. When I questioned her about the Midodrine being the cause, she thought about it for a minute and had to say that apparently the Midodrine is working. When she misses a dose, she knows it. She does better on 3 doses a day rather than just 2. She is still dizzy when upright, although even this seems to be improving as time goes by. Her heat intolerance is better, as is her exercise intolerance. She is so much more active than before, up and around, even walking outside (when it isn’t 95 bajillion degrees here) and playing with the dogs. It is pretty amazing, to be honest.
We saw the cardiologist yesterday and he is a little stumped as to why it took so long to work, but we are all willing to take the improvement and not question too much. The only other thing we have done differently in the same general time period is up her Vitamin D. So, that could explain the fatigue improving, but I don’t think it would explain the other symptoms improving. So, she will stick with the Midodrine and see the doctor in 6 months. Whatever benefits she gets from it are welcome and, so far at least, the benefits are significant. I am as surprised as anyone – gobsmacked, in fact.
This is just one improvement – between therapy and finding shoes that are both cute and supportive and the meds and her room and… everything – we are hopeful. It has been such a long road to get to this place. When I started this blog, I was honestly in doubt that we would ever be looking at such improvement. I was so afraid that the stories of people getting better would just not happen for us. But, we have come a long way and hopeful feels good. I know we still have a ways to go and there are pieces to the puzzle that still need to address, but, for now, we are going to sit and enjoy Hopeful for a while.