Medical Marvel

I’ve spent the last couple of months having doctors, nurses, and techs exclaim over what an odd ball I am (medically speaking, of course). They are, in particular, usually surprised by Parvo exposure with twins–the tech who often works on my ultrasounds says she’s never had a case of Parvo and twins and she’s been doing this for 19 years. My OBGYN and my Maternal-Fetal specialist have never seen it either.

Add to that my “extreme anemia,” which “almost never happens” and I’m just plain weird.

And then the other day, a nurse was exclaiming because the twins are both lying transverse instead of vertical. She tells me, “I’ve only seen that in a text book.”

I don’t tell them that I’m nothing special. Really. My oddness is a dime a dozen. The medical marvel lives at my house and hardly anyone exclaims over him–although they probably should.

This is a child they assured me was brain dead–except he wasn’t. This is a child whose only MRI report reads: “the damage is worse than expected,” and believe me, they weren’t expecting much. This is a child that a lot of people didn’t expect to be capable of much.

And here he is, recognizing his own name. He also knows “Mama” and “Daddy” and we’ve almost completely mastered “Buster” and “Max.”

and again:

And here we are beginning to use those skills to answer questions–I still have to hold out his pointer, but he does all the moving himself. Again, we’re still working on this:

Say what you want–I think it’s amazing.

About that iPad

Charlie got an iPad for his third birthday. Family and friends bought him iTunes gift cards and we were able to purchase Proloquo2Go for about twenty dollars out of pocket (thank you, friends and family!). We fooled around with it, but Charlie was disinterested, and I was a more than a little disheartened. I see the things that Caleigh was doing with the iPad immediately and I wanted THAT. The truth, however, is that Charlie is not academically inclined. He likes music and computer, but has no interest in books (sob), or answering mommy’s  questions. He wants to crawl and play and explore. He likes people. He likes shopping and going out to eat. Basically, he’s me, but smaller. Lord help us.

So the iPad gathered dust for quite a while. We brought it out in September and began playing with it again. Charlie still hated the communication app, so we used the game apps, story apps (slightly more tolerable than actual books), music videos, and of course, the iPod function.

Charlie quickly mastered the music video section although he did so mostly by banging his entire hand. After seeing that, we started messing around withe iPod function while holding his hand. Before we knew it, Charlie was able to scroll through albums to pick a song. He could make selection, change his mind, and exit out of certain screen. He’s better at it than any of his grandparents.


Point pointing finger at camera

Concentrating very hard at getting point finger out

So while not an academic by any means, Charlie is showing us that he gets things when he wants to. He’s capable of taking multiple steps to get where he wants to, and he can use pictures to make meaningful choices. These are good things. I do occasionally get him to use the communication app, and he’s always right on the money when I ask him questions. It’s clear to me that he understand a lot even though he’s not able to talk. Maybe one day he’ll want to say something bad enough that he’ll be forced to use the communication app. Who knows.

As an added bonus, he’s now very demonstrative about asking for help–even when it’s not the iPad. He’s also doing a bang-up job of getting his pointer finger out and using it although he would much prefer if you help him. These are baby steps, but I’ll take them.

Boy making sign for I love you

Trying to get pointer isolated, but ending up like a surfer dude instead

Below is a video of Charlie and his Dad using the iPad–Dad holds back his fingers so he can easily point. It’s hard to tell, but all of the movements are Charlie’s except for the “big tap,” because that’s a little too strong a movement for him at this point.

Shoes That Fit Over AFOs

Many children with disabilities will require some type of foot bracing. There are several options, but one of the most popular is the AFO, which stands for Ankle Foot Orthotic. Big and bulky, finding shoes that fit over them can be a pain.

Charlie’s first AFO shoes were from the company Hatchbacks. Hatchbacks are shoes designed specifically to go over AFOs. They come with a down-loadable sizing chart to guarantee fit. They also come with a steep price tag and are on the heavy side.

When Charlie first began using a gait trainer, he had a lot of trouble picking up his feet and the PT thought maybe his shoes were slowing him down. I headed out to get something lighter and the therapists kept asking me where I had gotten those great shoes! I thought I’d share my trick with you. There are two things you should know about this video: one, I forgot to say that your shoes should be at least 4 sizes larger than your child’s usual shoe. Less than this might still fit the AFO, but it may be hard to lace or velcro.  Second, I am slouching horribly in this chair. My husband assured me that I looked “relaxed,” but I think “sloppy” is a better term. Oh well. Don’t judge me too harshly–it took me three tries to get through this without laughing hysterically.

Other places that sell shoes that fit over orthotics:

Keeping Pace–limited choices, but they do have boots.

Piedro footware carries shoes that have the orthosis built in.Not too sure what the PT would say about that, but might be good for occasions where you’re not sure if you need orthotics or not, but want to have options.

Would love to hear from you guys about tips for buying shoes that fit over orthotics. No need to tell me to sit up straight and not slouch–the video speaks for itself on that one!

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