I know it's been a while since our last post, and not a whole lot has changed since then. We've had my Mom staying with us, which has been a huge blessing. She's really been helping us out a lot over the past month - either watching Alex for us or helping out around the house - it's definitely nice to have her with us. And of course Alex loves having her here (instead of just seeing her on the webcam).
I'd love to say that Alex is just "growing like a weed" but that's not really the case, as she hasn't been growing at all for the past 7 months. And her weight hasn't changed since she was 9 months old. We had some blood work done & consulted with Endocrinology and it turns out she has a growth hormone deficiency. So we've added hGH to her battery of daily meds, which we're hoping will help significantly with her muscle tone as well as physical development.
This may sound like another setback, but to us it actually feels like a big step forward in getting to the root of some of her problems. If the hormone deficiency is causing her weak muscle tone, then that could explain her difficulty with head & trunk control as well as swallowing and aspirating (and the myriad of respiratory problems). And the hGH treatment can be a wonder drug with very little side effects in cases where the body really needs it. So let's hope & pray that this really is a big step forward. I guess it takes several months for noticeable growth improvement, but we're hoping to see increases in her energy level sooner than that. Either way, we'll be sure to keep you updated.
Much love,
-Jimmy & Nicole (& Carol)
