Friday, April 20, 2012

My name is Erin and I'm a horrible blogger

I think the title says it all. I have neglected updating this blog for one reason or another. I'm on Facebook much more often that it's just easier to update Aidan's page there since there are over 1000 people like the page.

I meant to post something about the 4th anniversary of the accident and Aidan's birthday, but they both passed uneventfully. It's getting easier to deal with the loss that we feel. We have our days but I have too many things and people that demand my attention to wallow in sadness all the time.

I just recently came to the conclusion that what I miss most about Aidan is the interaction that we used to have. Another conclusion that I came to with the help of another ND mom's blog is that I just need to accept that this is how Aidan is. I need to stop wanting to FIX him because if the doctors and medicine can't fix his brain or erase the damage from the accident, then I surely can't. All I can do is be here to love him and care for him as long as I'm able to.

So with that revelation, we've just been living life. Doing the day to day stuff. We're trying to get approval from CAP-C (medicaid waiver program) to have the shower in our bathroom modified to better accommodate a shower chair, and to also replace the wheelchair ramp that we have to get Aidan in and out of the house. I just signed the last piece of paperwork for that today, so I'm hoping that we'll get an approval letter soon.

We've had several pieces of equipment approved but it takes so long sometimes to get the stuff. It may be another 3-6 months before we see any of it.

This coming Monday, Aidan is having surgery to release his heel cords. The tone in his legs is so high and it's caused severe foot drop. Imagine constantly pointing your toes... even when you can relax those muscles, they never relax enough that you can bring your foot up to flex it. That's how Aidan's feet are all the time. It's gotten more and more difficult to stretch him so that we can put his AFO braces on and therefore he can't stand in his stander.

So please keep Aidan in your prayers while he undergoes this surgery. It's a quick procedure, but he'll still be put to sleep so there's always concern for us there. While he's asleep they will put casts on his feet and lower legs. I'm not sure how long the casts will have to stay on, but I'm sure he's not going to be happy about them.

In June we have an appointment with a neurosurgeon to discuss the baclofen pump yet again. We had been seeing another surgeon, but he moved to another city, and since it's been almost 2 years since we did the baclofen trial we'll have to start over anyway. I'm hoping that Aidan will be able to have the surgery this summer.

So that's what is going on in our world. I'll try to remember to post after Aidan's surgery on Monday.
As always, thank you for the prayers and support.

~Erin

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