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 time..no 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.

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4 thoughts on “Anticipating a New Brace

  1. I think God gives us those uncomfortable feelings for a reason. I also think many people don’t ever question their health care providers because they think, “they went to school not me, so they know best,” but like you are doing, it’s so important to question and ask why a lot. These people are human with human sin and mistakes and can see a patient as just another one or number or chart where it’s very personal to us and sometimes we have to bring things up to get them to stop and think of them that way. We pay the health care providers, we are customers to them so they need to realize that without patients they wouldn’t have a job, no paycheck, no career. Question, demand if you have to, but go with that God given uneasiness. Even if you end up being a bit over concerned or are seeing something that is not there, it’s your right to question.
    I will pray for wisdom for you both in this and that you can get some good answers to all your questions. Praise the Lord that He knows Lilbit’s outcome and the struggles she will go through! I’m so glad He created her and has her in His hands. She is one special little gal and is a good reason to be Mama bear over!!
    Blessings dear sister!
    Amber

  2. Uhhhh…. Yuh!! That was getting this mama bear fired up too!! Wrong! Wrong! Wrong!!! I don’t like to be pessimistic but I’m guessing he saw $$$. And he went for it. Some parents wouldn’t question, and, I’m guessing, haven’t questioned. I doubt your family is the first in this situation, whether they knew it or not. And it just sucks!!!! You, as a family, are careful and selective with medical intervention, etc. And when you really, truly need something, someone tries to take advantage I’d your pocketbook and at the expense of your innocent daughter at that. Ugh!! Just downright wrong.

    Sorry….. That got me going. But it really sounds like the one brace will be great. And useful. Maybe in the future there is another place you can go for the braces?? And I’d just double check your bill when you get it too. Just too many red flags with the guy doing the fitting, iykwim…..

    Hugs, T!!! You’re an amazing mama. And your baby girl is thriving!! Praise Jesus!!

  3. Ok, so your bracing stuff works totally different than ours. I would have just assumed that he usually makes 2 braces for kids with SB, and didn’t really think about it until you mentioned it. Our PT really directs the bracing for us. The AFO guy definitely gives his input, based on experience, but our PT is the one who sees Gage twice a week, and knows his needs more than he could in a 20 minute casting session. She is the one who tells the AFO guy what Gage’s function is like, and what she wants to see happen with him. He spends no time, really, in a treatment session like setting, and I don’t expect him to. I just want him to do what PT says to do. Maybe he’s used to working like that?

    Are you guys not on any kind of supplemental insurance? Because of his diagnosis, Gage qualifies for a Medicaid program, called TEFRA here. He gets Medicaid benefits that cover anything our regular insurance doesn’t, and we pay a small premium based on our income. For us, it’s been invaluable. They allow a new set of AFOs every 6 months, due to growth, along with a pair of shoes to fit them. We never pay a dime. They’ve covered his Theratogs, any copays, clinic visits, etc.

    1. No we’re not on anything supplemental. I suppose now would be a good time to check into that, since we are into bracing.

      And, yeah, I don’t guess they work too closely here. They each ask who we’re working with on the other side, and that’s about it. Her PT wanted me to consult the other PT….who we never see..we only saw her the once (well, twice) when the clinic doctors mentioned going to look into starting with a brace. So, we saw her, ordered the brace after doing some evaluation, then came back in a few weeks to pick up the brace. Done. We are not supposed to receive treatment from two places. So, we were going with the one that comes to our home, as that is what the doctors recommended in the first place…they just set us up with theirs to get us started because they knew the in home therapy took longer to initiate. So we were to just get started with the one, who prescribed the small brace, then we receive our actual therapy from the one who comes to the house. Another agency.

      But our PT that comes to the house was saying to consult with the other PT who prescribed the brace, to see what she thought about going to the bigger brace. It seems this agency just doesn’t deal a lot in the realm of bracing. Like..that’s not *really* their thing. ??

      Annnnnywho….here we are. The new brace came today. We’ll see how things go.

      Oh…tips on how to start looking for that supplemental insurance? I’m sure I have some info here somewhere…but…that’s just it…’somewhere’.

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