Well, Mary’s sick again. She’s thrown up her breakfast every morning this week. She hasn’t gotten a high fever or anything which I’m grateful for, but she definitely got the nasty cold that has been going around our family. Her cough, along with the extra mucous, means that she’s much more prone to vomit. So we’ve had to cut back pretty significantly on what we feed her. I’m so grateful she’s been gaining quite well for several weeks. That makes this much less stressful. She’s also tolerating being suctioned for the first time in her life!
- I really want the endocrinologist to agree to an HGH (human growth hormone) trial. This would likely be helpful for Mary’s muscle development, but it’s complicated of course, and insurance is really picky about paying for it. There are other genetic syndromes where HGH supplementation is standard procedure. But there aren’t enough kids with CFC who have tried it for there to be a standard procedure on this intervention. Please pray for direction in this as well as that we might be able to do a trial without doing the super long, pain-in-the-butt HGH stimulation test, but that another simple blood draw test will be sufficient.
- With orthopedics, I’d appreciate prayer that we would have clear direction about how concerned we should be about Mary’s spine. She has scoliosis but I’m more concerned about the possibility of more serious spinal anomalies which do sometimes accompany CFC. I’m hoping that the ortho will just order a spinal and hip x-ray as that will put my mind at ease.
- I found out that Mary’s echo is supposed to be sedated. This is really disappointing. Mary’s other echos have not been sedated and I was really hoping we wouldn’t have to do general anesthesia with her again for a while. She comes out pretty rough and takes a good few days to recover. They said they could try it unsedated first. I’m not sure yet how to proceed here and would appreciate prayer.
- Finally, I decided to hold off on doing GI in Cinci. For now, my plan is to see a GI here in Bloomington (some pediatric GI’s travel down regularly from Riley). Please pray that we’ll get a good one! 😀
I continue to feel the relief of having some direction, and I’m so grateful to God for this answer to prayer. But Mary has also been doing particularly well for a few weeks. I’d appreciate prayer that I’ll trust Him with her all the time. It continues to be impressed upon me that her life is particularly fragile. God is using this in turn to remind me that I have no guarantee of tomorrow with any of my family members. It makes me so grateful for these days as well as keeping eternity on my mind. Thank you all for lifting us up to our Father in prayer.