Annelise gets her formula through a feeding tube. They adjusted the amount and time she gets her food so hopefully there will be no more barfing because of an overfilled tummy. She still has low muscle tone in her swallow muscles, so she has a hard time swallowing her spit, and with a big gag reflex... There's still a concern often for vomiting and aspirating what she vomits into her lungs, which is super dangerous, as you know... Pretty much just air is supposed to go in your lungs!
She will get her MRI tomorrow, possibly. The trach that she needs for the MRI was discussed, but ordered late, so we are waiting on it. I joined a hydrocephalus fb group and showed them the photo of Annelise's shunt with the bulge at the top... And multiple people recognized it as something that happened to them or their kids who had it fixed with surgery.😔. One day at a time though. That's the internet, we'll see what her MRI says first.
Because they took x-rays of Annelise's shu t, which goes into her abdomen... The tech reading the x-rays incidentally discovered that one of Annelise's hips is dislocated! We got to meet with the Ortho specialist, who said it doesn't look or feel like it will just pop back into place. As of now it's a wait and see deal. We discussed casting of her club feet in the near future and exercises I can do for her til then. I feel lucky that there is a spina bifida clinic at Miller Children's. The Orthopedic surgeon seemed very experienced! It's very surreal to finally be talking to people about the cosmetic issues, having the big surgeries done and in the past!
Because she has a neurogenic bladder, she isn't emptying all of her pee. So while she is going a lot, it's just basically the overflow that's in her diaper, and her bladder stays full a lot, putting it at risk for bladder... And then kidney infection. I was taught how to use a catheter to help her pee today. I got it so fast the first time, it was really empowering! But the second time we tried it, I made her bleed, gave up, and cried. They cathed Annelise when she was a teeny tiny thing, and she didn't have leftover urine. This recent development has been hard on my heart, since I had put in my head that God's gift to me was to not have to catheterize her, since so many kids with neural tube defects need to. It felt like He took back His gift, and that hurt. I'm the one that put those intentions on the Lord though. Another reminder that His ways are not our ways. If I am the one assigning intentions to God, I can just as easily say that His gift to me is meeting this urologist who gave her second opinion, which we looked into after much research and discussion, and because of her proactive stance on bladder health, cathing Annelise might save her kidneys! Big picture though, it's a reminder that we don't always know what He is doing... But we know that God is busy working in our lives. Like the song says! His ways are higher. I can't wait to see what He does next! There's lots of opportunity for amazingness!
- A
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