I took Allison to Mott’s Children’s Hospital in Ann Arbor on Thursday morning for a checkup with the genetic/metabolic specialist. Although there really isn’t anything specific that makes this doctor think Allison has a genetic disorder (still taking stabs in the dark), she recommends a very pricey “experimental” test that would analyze every single strand of Allison’s DNA. Because it is a new technology, insurance doesn’t cover it. Currently, this test costs $9K. I declined. After more talking with this doctor, I was convinced to enroll Allison in a research study, which would cover the costs. We have a lot of paperwork to get around in order for this to be legit, but at least it keeps the ball rolling. If this test comes back negative, then we don’t have any reason to continue down the genetic path. If it is positive, then we are closer to putting a name to her disorder – and we owe it to her and our other kids to find out if this is a genetic issue. In the meantime, I was reminded that Greg and I should not reproduce until we have answers. NO PROBLEM. Although, I do wish that surgeon could have made it official when he removed my gallbladder and appendix.
Allison continues to be as healthy as she ever has been. She hasn’t had a vomiting cycle since February 4 – which means we are going on four months! I am so thankful to have been introduced to her miracle drug: aloe water. She is still overweight, but not off the charts overweight. We will get to speak with her dietician this week, as well as the GI doc. Hopefully we can ditch one or two of her meds! That’s what I’m going to recommend anyway. Her last round of Botox wasn’t as dramatic, but she did bruise up more than she ever has. We go back to GR for a Botox follow up this week.
Right now we are in a “big decisions” phase. We are in need a new vehicle (in the next six months or so) but don’t know what to get. We don’t know if we should be looking for something that we could put a wheelchair lift into or just something large enough for our family of six, plus room for a folded down wheelchair. Do we get a van with a door that slides wide open for lots of wheelchair clearance, or do we get an SUV that would probably handle better on our wintery roads. If anyone has any experience with handicap vehicles or transporting someone who is handicapped, please send me some tips. I don’t want to make the wrong decision about a vehicle and then get stuck with something that doesn’t work for us. But…WHO KNOWS what Allison has in store for us. The kiddo might surprise us and walk one day! She certainly has the will power!
The finale of the school year is upon us, and boy is it a grand one. Between my own kiddos and the ones I teach, I think we have events every night next week. But soon enough school will be out, and I’ll be sleeping in until 7am. Hopefully, since Alli isn’t so sick, I can actually enjoy this summer vacation. I’m looking forward to reading books and working out and spending more quality time with my family. I’m also excited about moving forward with our building plans. We are too big of a family for this house (especially the one bathroom). Again, if any of my readers have experience with disabled folks, I’d love to accommodate any modifications that Alli (and the rest of us) may one day appreciate (ramps, hall/doorway widths, etc.).
Happy spring!
My bit...many years ago my parents built a ramp that slid right into their van. It would rest on the sidewalk or driveway and fit right in the space where the door normally slides, so it was kind of locked in place. It was slim enough that once the wheelchair was inside the ramp could be slid in next to the door. It made for a comfortable ride. Good luck! Glad to hear she is on a good streak and hope the study works out for you all!
ReplyDeleteIt was for my grandma, who then sat in the actual car seat itself,. Wheelchair went in back...clarifying my previous comment a bit!
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