Friday, May 13, 2016


Mira went in for her biopsy late yesterday afternoon and everything went off without a hitch. Afternoons have never been a great time of day for her, but she managed it all very well. She finished off two bottles in the waiting room before we were even started, so with only one bottle remaining, I was a little nervous I wouldn't have any tactics if things became dire. Not that she could have had a bottle during the procedure, but certainly it would have helped afterward. One thing is for sure, Mira is very strong, so we had four of us to help stabilize her for the biopsy. I wasn't too worried about her straining or fighting per se, but rather wiggling her way off of the table, as there were no side supports or anything to brace her. Thus having a nurse on either side, me at her knees, and the doctor actually doing the procedure, we all were working in unison to make sure she was safe. Mira fussed at the beginning of it all, but she was mad before we even put her on the table. About half-way through, she quieted down and almost seemed as though she was going to fall asleep. The total time she was actually on the table was less than 15 minutes.

We kept her home from school today for several reasons - one to keep a close eye on her, but second, to not have any worries about transfers at school. The incision was made under her right armpit, which is a prime spot when picking her up. Sarah and I both have our tactics for transferring her and I have always looped my hand under her left side, which makes it fairly easy to not mess with opposite arm. Her teacher and paras at school have different methods. She has been doing fairly well today - a little tired, but nothing unusual. We have to take her initial dressing off tomorrow and then back to the have her stitches taken out in 2 weeks. Even after our neurology appointment last week, we were still on the fence about having the biopsy done in the first place, as we hate putting Mira through testing, especially one that involves an incision and stitches. Testing for NCL or any sort of storage disease is rare, so I believe the yield with this is very low. If something were to surface from this, it would be bittersweet I suppose - at least we would know and we could better target appropriate and relevant therapies for her. We have always hated putting Mira through the MRI or spinal tap process too (she hasn't had either one in years and we don't plan on having another unless absolutely necessary) with the very involved process of sedation and recovery always taking a toll on her. The biopsy process seems to fall into that realm too in some ways, as she will have soreness and undoubtedly some amount of recovery. Our neuro told us to expect the biopsy results back in 4-6 weeks.

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