Okay, it's more like head, stomach, and feet ... but I couldn't think of a clever title for that!
I've been absent from the blog world for a bit because it has been a little chaotic around here. Fiona brought home the stomach flu from daycare and took Daddy, Auntie Emmy, Grandma N, and Mommy down with her. It was a "quick" (it doesn't feel quick in the moment) bug but takes about a week after to feel human again - and to enjoy food again. We're in better shape this week finally!
We had our regular spina bifida appointments yesterday and they went fairly well. Her final head ultrasound (her soft spot is closing so she'll need CT scans after this) looked great. She actually got her shunt adjusted to 100 - which has been our goal level. The neurology nurse thought she looked great in her development. Hooray!
We also went to spina bifida clinic. The renal doctor said her kidneys looked great and the specialty doctor was pleased. Mike and I are not huge fans of the rehab doctor. She came in and started talking about measuring Fiona for braces before she even looked at what she could do. In fact, NONE of the specialty doctors had her crawl or stand for them. They ended up casting her for ankle braces (AFOs), which should be here in 2-3 weeks.
When I step back and look objectively, she probably should have the ankle braces - at least for a while. We think they will go far in strengthening her confidence in her legs. Right now, she pulls to her knees really well - but is much more hesitant to pull all the way up. But we are working on it and she is making progress. Our parenting hackles do get up when we feel like the doctors are looking at her as a sb patient only and not as an individual.
So we'll see when she gets the braces. We want to make sure we continue to work the muscle tone and foot flexion that she does have, but we also want to do the right thing by her in the way of support. We want to give her every advantage when she needs it. It's a fine line that we'll have to discover as we go.
But we do know we have an incredible daughter and we will continue to be her advocates and teach her how to advocate for herself as well.