Okay, so we’ve got some changes on the horizon. Since Rhema’s surgery her progress concerning walking and standing has just plateaued. We LOVE her therapists and consider them family; so we all got together this past week to address the problem. We’ve all been discouraged that Rhema has not bounced back like we’d hoped and during our discussion her PT’s explained why they think that is the case. Rhema is dealing with both muscle atrophy and a huge growth spurt; having one of these issues will cause difficulties, but having both simultaneously has just ceased all forward momentum. So, something is going to have to change. The PT’s asked some hard questions and we had to really re-examine our mobility goals for Rhema. Should we continue the goal of Rhema being an “ambulator” (in-home or even short distances)? Should we just focus on her mobility using only her wheelie? I must say the days leading up the meeting and having the meeting were difficult emotionally for me. Daily I view her as a typical kid –she is just my Rhema– but, having these intense, pivotal discussion forces me to focus on things I’d rather ignore. Meetings like these always bring a sadness to my momma heart; many times it takes me a while to find my center again.
I do want to take a moment and brag on one thing though…..The one thing I LOVE is our Physical Therapy Team. Our PT’s listen to our heart for Rhema and they honor and respect our input. We greatly value their input; it’s a beautiful thing when we get to meet and work on the challenges facing Rhema. That is how it should be with all the professionals in our life (on Team Rhema) but sadly, many times that is not the case. I will not digress on this point, but wanted to champion these wonderful ladies that the Lord has gifted us with. We greatly appreciate them beyond what I can express; we are truly blessed to have them in our corner.
So, what are the results of our meeting? We all agree that is too early to jettison the goal of Rhema being able to walk, even if it’s just in-home. Rhema just has too much strength in her legs not to pursue this as an option; but we are fully aware that even when she walks, we are not talking about walking Disney or even the Mall. Having even a minor form of mobility will help her with bone density, continence, and so many other health benefits. Since we’ve all agreed to continue toward the goal of her walking, some adjustments must be made as what we are doing now is not working. We’ve gotten a date toward the end of August where we will have a consult with her Physiatrist about prescribing a more substantial bracing system for a season. The terms RGOs or KAFOs have been used and so we are researching those types of braces in preparation to have an intelligent discussion come appointment time. I must admit I’m not really happy with the thought of having to do intensive bracing, but I do agree that what we are doing not is not working. We all agreed that this form of bracing would be temporary and our ultimate goal would be to return to AFOs in the future. It will still be almost two years before Rhema will be eligible for the surgery that turns her feet forward into walking position. So, it’s really just feels like a waiting game to me.
During this time of more substantial bracing we have to be increasinly more vigilant to have her ride her bike and to swim. Both these activities will help to keep all her muscles strong in her legs even though to “walk” she will not be using all her muscles like she has to right now. I am convinced now, more than ever I’ve got to come up with a swimming solution to help her be able to swim more; daily, if possible. Also, I’m going to find an in-door track where she can go ride her bike so whether it’s rain or shine, cold or 100+ degrees like it is now, Rhema can ride. So, momma has lots more homework and lots more solutions to find. But Praise God that we will soon be moving forward literally and figuratively. LOL!
Well, that’s the update on her PT. Please, keep us in your prayers as we seek guidance from the Lord on what is the best path for Rhema. What equipment should we go with, what can we do to help her in the mean while, and that Rhema will tolerate these changes well. We all know she does not have an affinity to being strapped into anything. I’m hoping that if we have to go with one of these larger systems we can sell it to her by saying it’s a Rocket Suit. LOL! You know Rhema, she loves her Rockets and Robots. Maybe it will work and the transition will not be too much for her. We covet your prayers on all these decisions and thank each and every one of you for your continued prayer covering.