If you are friends with me on facebook, you might have seen me talking lately about Zoe’s latest addition to our “equipment collection.”
The older Zoe gets, the more specifically we are able to see just how spina bifida affects her. We, along with our best friend the physical therapist, are learning exactly which muscles Zoe has control over, and what areas she is weaker in. The good news is, she has shown function and control of almost every muscle in her lower extremities. Her glutes (i.e., her butt!), is one of her weaker areas. She can control her ankle movements somewhat, and can wiggle her toes just slightly. Her quads work, her hip extensors & flexors work, although of course, she still has to get stronger all around.
Our biggest dilemma lately, has been the fact that Zoe remains in our nursery at church. It’s not that big of a deal right now, as a lot of kids don’t normally move up to the toddler room until closer to age 2. The time will come, though, sooner than I’d like, that she may not yet be walking but she will still need to move up to her age-appropriate room. We are not ready to order a wheelchair because she is young, has a lot of growing and getting stronger to do, and we have no idea if she will need it yet. Her stander is too heavy to lug back & forth in public. She can’t crawl everywhere in public places. So what to do?
Enter the ZipZac.
I discovered this nifty little piece of equipment from another parent of a child w/ spina bifida. Thank goodness for the internet & some good networking! Anyway, the price tag is a hefty $1400, and of course, not something insurance will cover.
Enter the Spina Bifida Association of Kentucky.
The past couple years, many of you have so generously donated on behalf of Zoe to this organization. This time, they so generously gave back to her. They purchased a ZipZac for Zoe, and we agreed to return it to the SBAK once she’s finished with it so another child could benefit. It arrived today during naptime, and Faith was super excited. She kept asking when we could wake Zoe up so she could try it 😉 She’s the best big sister!
Trying it out for the first time…
She did great, although I am sure it will take a while before she learns to move it. This thing is a genius idea though! It is the perfect size, lightweight, & can’t tip over. While we still expect Zoe to walk, and we don’t have a reason to think she will need a wheel-chair full-time, the Zip Zac will at least let her learn to navigate new environments such as church classrooms safely, without getting run over by walking, running toddlers, give her some confidence in her abilities, and will allow her to move up to be with kids her own age eventually.
Speaking of walking, we actually made some progress today at PT. A few weeks ago, we had some knee splints made for Zoe to sleep in at night. These will allow her to keep her legs & muscles (particularly hamstrings) stretched and prevent contractures which would definitely inhibit any future walking.
Today our PT had an idea to try them out over her regular ankle braces to see how she’d do with some added support. Take a look for yourself…
She did fantastic! Actually, she even held my hands and attempted to take small steps forward with the PT supporting her at the waist. She told me today that she felt based on how well Zoe did today that she would be ready soon for a walker, although we might need to go a little higher on the bracing. It’s those darn glutes that are holding us back! Although I was discouraged to hear those words, “higher bracing,” I could not deny the fact that I was seeing Zoe do things right in front of me I had not seen before. She was trying to take steps, and standing by herself with only our PT’s hands at her waist. Our PT thinks we would be able to back down on her bracing, and even told me today she expects that eventually Zoe could graduate to using loftstand crutches. I can’t even let myself think that far ahead yet.
We go back to Vandy in March for clinic, so I will be armed with lots of photos & videos of what Zoe is trying to do, to see what our plan needs to be. We also have a consult set for Shriner’s in April, for a second ortho opinion. There is an ongoing debate of how high to brace kids with spina bifida, when to brace, and how long do you wait to see what they are capable of doing on their own.
Who knows? It has been a wild day. Standing, steps, ZipZac, and lots more. But now it’s way too late & I have to be at work in the am…so I will leave you with a pic of my two sweet ladies…sharing some love 🙂