Our journey through life with hemiplegic cerebral palsy and infantile spasms

Friday, February 27, 2015

An unwanted trip down memory lane

Over a week ago, Karsen fell down three concrete stairs. He didn't hit his head, he didn't go unconcience, but I knew right off the bat that something was wrong. He cried the owie cry. He wouldn't even let me lightly touch his foot. So, I took him straight to the ER. After a few X-rays and a lot of time spent in a tiny closed off room, they couldn't find anything. We  were told he might have chipped his growth plate but they just can't see it. We had a follow up scheduled for a few days late with his pediatrician. Over the course of 5 days I was brought straight back to a long year of butt scooting. I felt like we had taken a giant step backwards. At our follow up, our doctor ordered 4 more x-rays. It's hard to figure out where the source of the problem is  when Karsen can't tell us where the pain is on top of having a really high paint tollerance on that side as well. We got the results to those x-rays less than 24hours later. All came back negative, not  any breaks. On one side I'm grateful, no cast. On the flip side, that means we still don't know what is wrong and a break is easy to let heal. Tendons, ligaments, muscles are all complicated when  it comes to Karsen's affected side of his body. We are waiting for the referral paperwork to go through so we can see an orthopedic. My heart breaks for Karsen. Once being able to walk and run all over, now he back to being planted on the ground. I can see it's frustrating him to not be able to walk and keep up with others but I also can see anytime he tries to put weight on it, it hurts. I'm back to doing what I do best, squeaking. I have called three times to get the referral paperwork pushed through sooner. 
In the midst of all this chaos, I've been going through the process of finding a new speech therapist for Karsen. I fired his current one. We just weren't seeing any progress for months. It's time for a change. We toured an afternoon program where he'd get speech therapy twice a week as well as during the class. It's a short 2.5 hour program. We are waiting for our IEP to get the paper work pushed through and start. 
I know some people, myself included, found  it interesting that each person we've seen has never mentioned a communicated device for Karsen, or any other form of communication for him that would be affective and alleviate some of his frustration. With in 5 minutes of talking to the special education teacher at the afternoon program, she immediately asked me if Karsen has ever used one. I'm by no means giving up on Karsen talking and continue to push him  in speech but as time passes I am starting to feel as if we need to find something to fill in the gaps, give  him a voice, show him he too can have a converstation with out waiting years for speech to come. I still haven't decided how I feel about introducing a communicative device, I think it's easy for me to not read too much into it since it's clear we aren't giving up on him talking. There's a part of me, deep down, that feels he may never talk, and that's quite ok. What ever His plan is for my little man is perfect, I just want him to have a way to be present, more than just phyiscally.
At my bible study group I went to yesterday, there was a segment where we had to repeat after the speaker (Beth Moore), saying "I am not in control" along with a series of other statments that all covered the same thing, we don't have control of our lives, we never will. This is one of many constant reminders of that. God has control over this situation. He's got my back, He's got Karsen's. I need to be leaning on Him more. It's so easy to be caught up in the craziness of your life thinking that YOU can figure out how to decompress, destress, unwind, when there's always only one answer. God.

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