Thursday, March 29, 2012

Brace Yourselves

Kemper got the DAFO's, I talked about that in my last post.  I was nervous about them and not looking forward to it, I tried to look on the super bright side, but I have a way with the opposite occasionally.

I took him to the orthotist's office and a giant man who looked like a cross between Mr. Clean and one of those old time-y muscle men with a mustache came in and fit him. He said they fit great, his shoes were fine, and he sent me on my way.

Well, there was the whole insurance/ CDSA/ pay out of pocket thing, which got straightened out, but there was a thing.  I'm still waiting on a refund check. Lesson to myself, always call before something new to find out if it's covered. But I digress.

He came home in them, didn't care for them, I worried and fretted. Kelly, Squish's PT came out and got him to do stuff he hadn't done before.  He works for a solid hour with her on standing, cruising, stepping, balance, etc. After that, we put him in the braces for an hour a day.  Now we're up to 3 hours a day.

He is pretty close to independent steps.  He's taken quick stumbling steps on his own, and he walks to the mailbox and back holding my hand.  He will walk all over the house holding a hand to give our dog treats. He'll cruise between furniture for books and toys and cheerios.  It's been pretty awesome to watch.  He's making mighty strides in his strength and stamina.  He can even stand up alone until he realizes he's not holding on to anything.

He's pretty much teaching me at every turn that my worrying is nothing compared to his resiliency and determination. He's like sunshine chasing my gloomy clouds of doubt away, even when he doesn't succeed at something, he tries again with a smile on his face.

I gotta tell ya, this Mommy thing is pretty cool. For your enjoyment, I've included a picture of Squish rocking his braces.  He's pretty adorable.

So until next time, I wish for you to find a little bit of sunshine to wash your worries away.

Saturday, March 3, 2012


I've never been fond of surprises. Surprise parties invite me to be as awkward as possible and most likely un-showered. Surprise gifts make me almost as awkward. I give my husband a list for holidays and my birthday. He doesn't care for that part of my personality because he likes to surprise me. I hate I ruin it for him by continually asking if he stuck to the list. Most of the time I end up with presents early because of the questions. I plan our getaways, day trips, doctor appointments, all that stuff... it gives me the illusion of control and surprises knock me off my game. If we do something spontaneous, it was absolutely my husband's idea.

That brings me to surprise DAFO's. That stands for Dynamic Ankle Foot Orthosis. When Kemper was in the womb we were told many times that he would be a walker.  I believed it because he kicked me like he was rave dancing in my womb from the first time I felt him move until he was delivered. He wiggled and pushed and strained and ended up in a downward dog on his face in his isolette. He popped stitches because he moved so much. He crawls, he pulls up and cruises. Everyone talks about how he's going to walk and need little to no help. That was until he went to the Orthotics guy. Then the PT and this guy I just met decided he needed DAFO's.

That's a brace that goes up his shin, with straps. That was a surprise. And I didn't like it. The PT tells me, "It's temporary, when he's got this we'll cut them down to AFO's and then he'll move to a shoe insert." When you ask a PT why all of a sudden it went from shoe inserts to big honking plastic braces, it's best not to mention you fear punching people in the face for staring. That tends to confuse and frighten people who don't get me. Would I punch someone in the face really? I'm not ruling it out, but 99% of the time, I bet I could manage not doing that.

See I'm sidetracked. It's not even really staring that bugs me here. Some of it is the shock of the sudden change, which has been explained to me, but I'm still not a big fan. Then there's the whole make him wear them, look out for redness, blisters, and pressure sores. What if he hates them?

I had a cat a long time ago that I thought I could put on a leash.  I also thought I could train him to use the toilet, but that's a story for another time. Well, I would put this harness and leash on the cat and suddenly, he was rigor mortis like those fainting goats.  Would. Not. Move. He would have made a convincing stuffed animal in that situation were it not for the flattened ears and look of contempt in his eyes.

Is this what it's going to be like with poor Squish? I strap him in braces and he won't move? Or he goes tomato face and wails. Doing what you know is best for your child is tough enough, then add the fact it's not something I'm too thrilled about on top of the possibility that he may hate them and you have a pretty stressed out Mamma Bear.

They aren't even in yet, though, only ordered. So here's hoping I strap him in and he thinks they're the coolest. That would work. I've even tried to daydream to a Forrest Gump type scenario, we strap them on and he takes off. I'm aware that's a day dream. I'm fully expecting good and bad days. For the moment, I'm coming to terms with him needing braces. It's the only thing about him that would broadcast to the general public that he has Spina Bifida and that is the part that I think will be hard for me.

There will indeed be an update in the near future about how the braces are doing for him, how he handles them and if I punched anyone in the face I'll be sure to include the police report.