We Get By

What She Wore: scoop neck, blousy tee from Target with a yellow and grey floral pattern; dark wash blue jean capris; gray and black herringbone mary janes. I’d love to find a fun pair of gray shoes, but so far I haven’t seen anything that I can’t live without.

What She Ate: Baked potato soup for lunch. For dinner I’m supposed to be having a Lean Cuisine, but I’m going to try to convince the Hub to take me to La Madeline.

OK. Good appointment with the physiatrist. I left with a fist full of prescriptions, but the news was generally good. The main reason we see a physiatrist is to make sure that Charlie’s tone isn’t affecting his ability to develop. Tone is a muscle’s reaction to a brain injury and it comes in two types–too tight (spastic) or too loose. Tone can be addressed with braces and splints, or with medications like Botox and Baclofen.

After his assesment he found that Charlie’s left arm and hand are completely normal. Yay! The fingers and thumb on his right hand are tight, but his wrist is fine. He wrote prescriptions for two different thumb splints–a soft one for daytime and a hard one for sleep.

Charlie’s hamstrings are still tight. The doctor thinks that he may have lost a little range of motion, but not enough to warrant an oral muscle relaxer. Frankly, his PT doesn’t think his hamstrings are bad at all, so I completely agree with the decision to forgo medication. I’m not sure we’ve really lost range of motion, but maybe I’m in denial.

His calf muscles are fine and there is minimal if any tightness in his ankles. He does have a little foot drop, but nothing major. I mentioned that his PT was interested in AFOs for his feet. The doctor wrote a prescription for them, but he felt that Charlie will be able to stand just fine without him. Yay on that too!

He found no problems with Charlie’s hip muscles, but he will go ahead and have a hip X-ray done at one year to make sure there are no problems there. Hip problems are very common in kids with cerebral palsy.

He wrote a presciption for a swallow study to see if we still need to thicken Charlie’s milk. I’m going to talk with our OT and see if she can go with us to the test. We talked about the fact that Charlie’s been refluxing since we took the anti-seizure medicine and he said we could try Prevacid if he continues to have problems.

He was pleased with Charlie’s development. While definitely behind, Charlie is progressing nicely. He was especially pleased that Charlie passes objects from one hand to another and that he pushes up with both arms. He noted that Charlie was a healthy size and weight, which can be a problem for kids with brain injury. I know we’re short, but I think that’s mainly genetic.

He also recommended that we consider private therapy in addition to Early Steps, which is state sponsored. I want to do everything I can for Charlie, so I’ll be looking into what this will cost and what exactly our insurance will cover.

He officially changed Charlie’s diagnosis to Spastic Tri, which means three limbs affected.

Oh yeah, perhaps most importantly, he complimented Charlie’s outfit. That, of course, made my day.

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  1. Such wonderful news :)

    Benik makes a wonderful soft brace and it is cheap…like $40 cheap. D wore one for a long time. She has thumb abduction still, but her hand is an issue we will always deal with.

    Elise’s appt. went well, too. They are recommending OT BUT she is fine. She is developing but just at a slower rate than they would like to see. In the meantime, I’m going to meet with them once a month to come up with home ideas for her to keep her progressing.


  2. Elizabeth says:

    Way to go Charlie! :)

  3. Nadine Hightower says:

    Woo Hoo!! Good Job!!

  4. Small Town Girl says:

    Great news!! That’s so funny that the doc commented on his outfit. You are too good. :)

  5. Leucantha` says:

    I am glad Charlie’s momma doesn’t dress him funny. ; ) He can’t help but be stylish with you for a mom. (God help my kids.)

    I am curious when you say he is behind or on time is that a chart based on his particular brain injury or against the standard progress charts.

  6. Charlie’s progress is measured against other children his age. It doesn’t take into account hospitalizations or any of that. They told me to expect a two month delay at a minimum, but that’s not figured in when they’re trying to see where he’s at.

    If he’d been born earlier than they would account for prematurity, but he was delivered right at 37 weeks, so he’s considered full-term.