LilBit had SB Clinic this week. I had already planned to talk to them about a new brace for her as she is reaching the end of hers. Also, her PT had mentioned me talking to the other PT (who prescribed the brace) about possibly going to the taller one.
So, I had planned to talk to the drs and then see if they could schedule me with their PT again. (figuring I could probably get in faster, kwim?)
Well, she sees an ortho as well as rehab. One said he thought the higher brace would be a good idea. (this is what he said on his own, I hadn’t mentioned anything yet). Then the other comes in and says he thought she was doing fine without any bracing.
But….he barely saw her on her feet. She was VERY done for the day. It was a long, long day! She only took a couple cranky steps between me and hub, both hands held.
Then we mentioned what the other dr said as well as the PT. He understood and didn’t press against that at all. So, that was nice. It felt like the views evened out at that point.
We totally see what he is saying too. That we do not want to brace her if not needed. We want her to use those muscles, to strengthen them. As opposed to bracing them up and letting the orthotic do all the work, thus causing any strength she had, to go down.
So, we are going to go ahead with a new brace. There was a specialist in house that day, making the rounds with the drs. We now have an appointment set up, for this coming Monday, in fact, to have a mold made so she can get a new brace. Our plan is to continue to work with her without the brace, but use it as needed. We want to see if using the brace will give her confidence to step out, then still do those things even when not wearing it. Strengthening those muscles.
In other news, all is well. No kidney issues have cropped up. That is the big concern right now. THAT is the kicker. THAT is why she must endure ultrasounds every six months and urodynamics testing every year. (no, the u/s is no big deal, but when you’re her age, it sure feels like it LOL she wasn’t happy at all) But, that all came back clear.
I think the biggest kicker for me this visit was the realization that….though she is doing well and is progressing physically, this isn’t over. This progress doesn’t mean she’s ‘kicking this illness’. Spina Bifida is still there. Always will be. As the neuro said, which is the one that got me, another operation to untether is quite possible. In his experience, this is not likely to happen too soon (though there is always that possibility), but, nonetheless, even if it be 8-10 yr down the road, (as he says holds a 50% chance) the possibility is still there. Spina Bifida still has my child. My child will never ‘outgrow’ this. She will never ‘beat’ it. It will always be there.
But that doesn’t mean she is limited. 🙂 She can still fight, and strive, and overcome obstacles, and be and do her best. She IS still my spunky, determined, stubborn, independent little girl. And I don’t expect that to change. Ever. 🙂