Biopsy Fun

On September 16th doctors did a muscle biopsy on my daughter’s leg. A couple weeks ago they had lost or misplaced the results. Last Friday we got an evening call saying they had found the results, but they were inconclusive. Meaning the test was for nothing. So from the EMG and muscle biopsy all we know is that she has very little muscle that’s extremely weak, a lot of those nerves may be missing or just damaged and we have no idea why. Did I mention this biopsy left a scar? Grrrr.

So this bummed me out more than usual. I don’t know why I was expecting something concrete out of this test. This is arthrogryfreakin’posis we’re dealing with here. But I was hoping for some piece of information gleaned from this test to show if I caused this or not. Or tell me if it was safe to have another kid someday. I think I would rather have had a bad test result than an inconclusive one. Then at least I would have some direction. Well, we do have some direction. We were given the names of two doctors who deal with genetics in our area. Right now I’m thinking we won’t do anything with them.

I’m considering going with a friend to see some doctors in Seattle this year. At first I was a little scared because getting the biopsy news left me feeling unsure if I could deal with more bad news. But this may be a good opportunity, as my friend put it, to find at least one thing to help Lali. There is a doctor there, Judith Hall, who is the amyoplasia expert. The arthrogryposis clinic starts March 31st.

The only problem is that yesterday they called me and informed me that my insurance does not cover the whole thing. It will cost around $1,500 out of pocket. At first I thought, “No way!” But I’m realizing after talking with the scheduling gal that seeing these famous AMC expert doctors who are getting up there in years while they are still doing clinics of this sort is probably worth it. The hospital scheduler said she had people with AMC coming from all over and they all wanted to see these doctors! Also our insurance is not going to get any better, and we may need this information now before Lali gets much older. Especially now that we’re looking at more surgeries coming up soon. I definitely want some second opinions. And soon.

We have an appointment with Lali’s surgeon in about four months to evaluate her for her next hips surgeries.

So we’re considering going to Seattle despite the cost. If we could make payments or something I think it could work out over time. We’ll see. Of course if it doesn’t work out then it doesn’t work out, but I want to know, as a Mommy, that I’ve done everything I can for my baby.

One Response to “Biopsy Fun”

  1. Anonymous says:

    I agree wholeheartedly. Do everything you feel that you can for Laelia. I’m so sorry that the muscle biopsy was inconclusive.

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