Thursday, May 24, 2012

james: medically speaking

I know I've promised this post for a while.

An update on where things are with his doctor's appointments and therapies.

OT is better. We were kind of at a standstill until our appointment this week. A different OT was brought in to consult with our regular one and this new one was full of ideas and innovations to try! She knew of all kinds of different products (things to help him feed himself). For the last month, James has only had straight (unbent) forks and spoons to use which are hard for him to angle to his mouth. Then this new OT mentions that the spoons can be heated and bent!

And I left with photocopies of pages from a catalog that's chock full of adaptive utensils. At this point, we don't care if we have to buy them outright to get them faster. Our OT said she'd have to write a letter of medical necessity to our insurance and get approval before she could purchase whatever's needed. Ugh. I think we can spring for the $50. Sheesh.

Thank you, Jesus. Finally.

However, here are some photos from a couple of weeks ago when we first tried 'feeding therapy.' I didn't get a video this week. :(

James enjoyed writing on the mirror with window crayons.

So excited to be making tiny, baby steps.

Now, on to the appointment we had with the prosthetists. This was pretty cool. They were very excited about the strength, mobility and range of motion that James has on his right side. And his little arm and hand, for that matter. They were anticipating having to fit him for a prosthetic on that side, too. No way are we touching that precious arm and hand of his! God gave him a huge gift when he formed that in the womb! (Jeremiah 1:5).

They pulled out all kinds of prosthetics. It was interesting. But we haven't made a decision. Gotta have him evaluated at Shriner's first to see what the best course of action is.

Look at his cute little body! And all the random body parts everywhere!

The boy is happy in all (okay, almost all) situations.

These are the electronic sensors being held onto his muscles to see if he can activate them and watch the mouse on the screen move in sync with his muscle movements. This is how an electronic prosthetic arm will ultimately work. So he'll have to go through a lot of pre-prosthetic training to get his muscles prepped to do what they'll need to do to make an arm function. All in all, it was a very good appointment. Very informative.

And, of course, he was in front of a computer so he was a happy camper. :)

He then had a speech evaluation last week. We suspected what was reported. He hasn't been home long enough to really evaluate him well. So, we'll go back in three months for a re-assessment.

But, boy oh boy, is his speech coming along. It's c.r.a.z.y, y'all. Crazy-cool.

Just got a call from the MRI nurse. He has his pre-MRI appointment on Thursday at the pediatrician's. However, they want to know medical history, of course, and we don't know anything. Because he's going to be sedated, please pray that he can tolerate the anesthesia and that all's goes well in that regard. He'll have the MRI next Friday, the 1st.

Then we head to Shriner's on the 5th with our appointments on the 6th. So curious to see what they have to say. And, we had a cool small-world experience in preparation of our trip to Philly. My stepmom said one of her best friends from her youth is a pediatric orthopedist in another state on the east coast (Pittsburg?). She said she could certainly contact him and mention James to him. So she texts him while I'm sitting with her. Complete with a photo of James. Her friend responds right back with a guess at diagnosis (!). Then she mentions to him that we're headed to Shriner's. I get an email from her the next day and he highly recommends the very doctor that we're seeing.

Love it.

I think that wraps up most of where things are medically.

My next post must be about this boy's dance moves.


Get ready.

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