Kinsley's SDR Evaluation at the Gait Clinic

Yesterday we went to Shriner's to have Kinsley's first evaluation for her Selective Dorsal Rhizotomy surgery that she might possibly be getting this year. I won't go into all the details of this surgery, but if you want background information Selective Dorsal Rhizotomy (SDR), and how it reduces spasticity and muscle stiffness, you can read this post here to learn more about SDR surgery.

We got to Shriner's at 1pm, and headed down to the Gait Lab. When we got there they didn't waste anytime asking lots of questions, got Kinsley changed into some shorts and a tank top so they could see how all her muscles are working and we got down to business.

The first thing the physical therapist did was get a video of Kinsley walking with her leg braces on, using her walker. She "ran" (as much as she can), up and down a blue lane while PTs filmed her from forward, behind, and at her side. They also had two stickers on each of her knees that communicated with a computer that would read what her muscles were doing, and eventually spit that information out into some type of report.

They then repeated all of this without her leg braces on, and that's when all the drama and meltdowns happened. Kinsley has literally never walked with her walker without her leg braces. It was really eye opening to see how much she struggled, how high her muscle tone really is, how much she walked on her toes and could not get her feet flat on the floor, and how painful it was for her to do that. It was a sucker punch to the gut for sure.

I then had to fill out a bunch of questionnaires, they manipulated Kinsley's legs and feet into a bunch of different directions, took a ton of different measurements, and added that to her file as well.

Collecting all of the data took about an hour and a half. They then went on to tell me that it will take about two weeks for them to get all the data from her tests, and then they will take that data and send it over to the doctors at Primary Children's Hospital.

The pediatric neurosurgeon and team at Primary's get together for what they call a "spasticity clinic" where they meet together in a conference and will talk about Kinsley and any other children with cerebral palsy being considered for the surgery once per month (unless they don't have enough kids to talk about and they'll skip a month...) During that meeting they'll review Kinsley's report from Shriner's, watch the videos of her leg muscles, and make a call on what they think the best thing for Kinsley moving forward is.

After they meet together, we'll get a call and they'll let us know if they think Kinsley is a good candidate for surgery or not. What I thought was going to be a really quick answer is really going to be something that we're going to have to wait 30-60 days to hear back on.

Another slightly frustrating thing is that we talked to some friends whose daughter is having the surgery at the end of next month here in Utah. They scheduled their daughter to have the surgery in July, and aren't actually doing it until now, seven months later. So even if we get accepted for the surgery, it looks like it's actually going to be a really long time until anything happens.

The reality is we could be a solid nine months out surgery. It's a long time to just be sitting around and waiting, but I also need to remember that this is all in God's timing as well, and that His timeline always reveals some amazing things in all the waiting. It just means we have nine months to do even more work, more physical therapy, get Kinsley even stronger than she is now, and the stronger she is before surgery, the better the long term outcomes will be after surgery. As always, we'll keep everyone updated as we learn more!

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