So! Some medical updates for you:
-I mentioned in an earlier post that Leah has mild obstructive sleep apnea. The ENT reminded me that she also has some central apnea, which occurs when the brain simply doesn’t send adequate signals to breathe. Treatment remains the same, but I want to make sure I’m being accurate since I’m sure I’ll use this blog for reference later on.
-Speaking of the ENT, Leah had a miserable appointment the other day. She had to get her little ears scraped out because she had a lot of wax, and she had her little nose scoped. NO FUN. I know it was much worse for her, but I’m not gonna lie – it was pretty freaking awful having to hold her still while she screamed and sobbed uncontrollably on my lap. They don’t have an exam table in there, so I had to hold her still (with the help of one of the nurses). Her little tears were rolling all the way down to her neck. Poor Bunny. She is due for an audiology test later this month; we’ve had some concerns about her hearing since she is still not responding to noises from sources outside her direct light of sight. I still think it’s more an issue of attentiveness since she was in the ICU for so long and it’s possible she has learned to tune things out, but at the same time it’s important to rule out hearing issues since many kids with Down Syndrome do have ear problems. And you could probably hit a gong behind this kid and she wouldn’t turn around to see what’s up. The doc was only able to see into one ear canal (although this is the first time ANYBODY has been able to see anything at all), and she said Leah’s eardrum activity looks good and she didn’t see fluid. No word on the other ear. Too itty-bitty!
-Our little chunky monkey hit 13.5 lbs today!
-The big update: Leah had a dilation today, and while the last dilation took her esophagus from 9mm to 10mm, this procedure had the doctor re-dilating her from below 5mm back up to 8mm. He doesn’t know exactly how narrow it was, but he knows it was less than 5mm because he couldn’t get the scope through. So we’re essentially back to square one. Her next procedure is scheduled for next Thursday, but the surgeons and the GI will need to confer and decide what they want to do next, because there is not much sense in continuing to do regular dilations if the stricture is just going to tighten again. The GI discussed perhaps injecting steroids into the stricture, but apparently this requires special equipment that may or may not be available at this hospital, particularly before next week. He also discussed the possibility of the surgeons needing to operate on the esophagus again, as well as the potential for a fundoplication, a surgical procedure that curbs reflux. The fundoplication has always been on the table as a possible necessity in the future – it just seems like maybe the future has arrived a little sooner than we thought. But I don’t want to jump the gun – the surgeons and the GI haven’t yet conferred, so all I can do is speculate.
And on that note… smile! It’s picture time!