Monthly Archives: August 2012

Anticipating a New Brace

So, as I recently blogged, LilBit had clinic last week and we discussed a new brace, as she’s outgrowing hers and PT had mentioned talking to the other PT about the higher brace.

So we went to her appt for that today and got her molded for a new AFO. I’m trying to decide how I feel about this whole scenario, this guy who’s doing it.

All this one has ever mentioned the need for two braces. They were only concerned with the left ankle rolling. Then PT wondered if she needed a little extra support. Just something to give a boost in confidence and security.  I understood that logic.

Then I start hearing about her weak thigh muscles. Not drastically weak, just weakER, again, the AFO would help with that.

The differing dr opinions thing…one strongly suggests a brace, the other ‘meh, whatever’. But in the end, that one seemed to even out to something I was comfortable with. And felt like going ahead with a new, taller brace was the right idea.

Then we have the appointment today to have her cast for it. He barely looks at her at all. Hardly sees her walking. And is then ready to form up braces for BOTH legs??

No one has ever mentioned both legs. Ever. EV.ER! They have ONLY EVER mentioned bracing the left side as it is weaker.

Now this guy is talking both? What the heck? Where did that come from? I mean, if that’s what she needs, ok, sure, we’re all over that. We’ll do what she needs. But …. ?? So hub said something about it and the guy like flipped a switch. Not to the defensive “oh this is what you need to do…” but rather “oh, ok, no problem, we can just do one” Um, ok, that was easy. Too easy. Then why in the WORLD were you saying two if you now act like it’s no big deal at all to just go with one ???

Is anyone else thoroughly confused by that?

I’m just getting a not so great feeling about all of this now.

And then the money. *ouch* Something goofy with insurance deductibles and we had to pay more for this today than we realized. Not cool.

I don’t know. I just have a less than fab feeling about all of this now. *sigh* And I don’t know what to do about it.

I want to do whatever BabyGirl needs, but I don’t want to do or feel pressured to do MORE than what she needs. *I* think she could benefit from the taller brace. I also think it could lend confidence and that with work on her skills, as we’ve been doing, with and without the brace, that she will progress at a faster rate. That is truly what I feel and believe. Her PT, who has seen her twice a month for the last several months, thinks the same way. My husband thinks this same way.

Her doctors at clinic feel similarly, as we finally deduced. No one wants over-bracing. We all want ‘just enough’. We all want her to continue to work her legs/muscles and work on walking independently. We all believe she is highly likely to do so.

Then enters this guy who does the AFOs.

At this moment, I’m feeling like he was just swarming around the SB clinic that day awaiting a victim. And made his advance at us.

I don’t like that. I don’t like that feeling at all! And it irritates me even more than my baby is involved in it. Don’t USE my child! Talk about getting a mama bear fired up, right?

So, I guess I have some more soul searching to do here, and talking. I don’t think we can cancel anything now. But, oh well. Once this is done though, I’m not sure I’ll be going back. I’m just getting a not so great feeling here.


Clinic at 20 months

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.

We’ll see.

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. 🙂

Daddy and his girls