Having just spent my morning getting myself and the girls ready to go to Spina Bifida Clinic, three hours and change trapped with two two-year-olds in one exam room, and having gotten them home without car napping and successfully into and asleep in their beds, I pondered a daytime adult beverage. Instead, I wrote a blog post.
Spina Bifida clinic is always like this– they try to line up 3-5 services to see patients all in one day, and this leads to a lot of waiting for one or the other to get out of an OR or out of another patient’s room to see you. All day clinic visits were rough with infants, but they are just essentially impossible with toddlers. I was well-prepared with snacks, toys, iPhone and iPad, and even a movie, but by about hour two we were losing it. I even got both girls strapped into the stroller and told the clinic coordinator we were leaving, which prompted her to kindly give us some snacks and swear that the orthopedist was definitely actually on his way for real this time, no kidding. These long days make sense for people who come from all over the state to the clinic and don’t want to drive to Little Rock for multiple services. But for someone like me, who doesn’t always have childcare and lives about 3 miles from the hospital, it doesn’t make sense. From now on, I’ll be making appointments to see only one service at a time. No more trying to corral my little ones in a tiny room for hours on end.
The good news is, Claire is doing great. I have never felt more smug than I did this morning, watching her walk in front of a rehab medicine doctor who previously said she’d never walk. Now, I get irked with other parents of kids with disabilities who seem offended when doctors say their kids can’t do something, as if the doctors are trying to be mean when they say these things. I appreciate both as a patient and the wife of a pediatrician that doctors are just trying to provide realistic expectations. I don’t think it’s about deciding what a kid can and can’t do, or limiting them in any way. HOWEVER, this particular doctor had, in my opinion, at the time of making that declaration, not done a particularly thorough exam, and didn’t seem to be listening to me when I told her Claire was already doing things that, if this doctor were right, she wouldn’t be able to do. This was particularly frustrating when our amazing orthopedics team has always been very optimistic about Claire’s potential to walk and had also done a very thorough exam to see exactly where she has sensation and strength and where she doesn’t. So, watching Claire, strapped into her AFOs, strutting across that tiny exam room made me proud as proud can be. I resisted the urge to stick out my tongue and say “TOLD YA SO” though, because I am an adult, most of the time.
We did get a prescription for a reverse walker, so you might see Claire using one in photos in the future. We don’t think she will need a walker forever, but it will be something she can use while she’s still getting strength and her legs under her, and will allow her more independence in the meantime. I have visions of taking it with us to the zoo and her zooming all over. I can’t wait to get it!
We didn’t see urology or neurology today, but both rehab and ortho think she’s doing great, and I agree. She’s just figuring things out and making new strides all the time, and I am so very proud of her. I’m proud of both my girls.
One Reply to “A Claire Update”
I have AFOs. They’ve been a life-saver, And a much better alternative to foot surgery. The orthopedist at UAMS was talking about removing bone and moving my heel forward accompanied by a four month recovery time. Then she said, “Or you could wear braces.” I didn’t have to think twice about it. Because my feet are already a size EEEEE I need a 6E wide shoe to hold the feet and the braces. They’re not sexy but they really help me a lot.
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