We had an early start today, with an appointment at 7:45. We left our room at 7:36, took the elevator down to the "Subway" level (underground), walked across to the Mayo Building, and took the elevator up to the 16th floor. We met the rehab doctor, who was very encouraged by Allison's "level of engagement" and the fact that she opens and closes her hands when playing with toys. She wasn't all too cooperative when the doc was playing with her legs, stretching and pulling her in all directions. But overall, we learned some things from this appointment.
The highlight of the day, for me anyway, was the appointment with Physical Therapy. I wasn't too excited about it before we got there, because Allison has had about 100 therapy sessions. But WOW! this gym was amazing. We were introduced to tools, vests, gadgets, toys, sitters, and standers. We definitely need to look into these things because we were amazed at what Allison could do. She was strapped into a spandex vest that helped support her core. Because she didn't have to concentrate so much on holding up her core, she was much more accurate and active with her hands. She even had much more head control. But when she was put in the "Supine Stander" she really impressed us.
The therapist explained that muscles strengthen and bones grow when you put pressure on them. If Allison doesn't bare weight on her legs, her bones, most likely her hips (which we are cautious about anyway), will continue to be weak. But she doesn't have the control to put pressure on her lower body - until she was put in the stander. We got her all strapped in, in a horizontal position, then we slowly put her closer to vertical. She kept lifting her head, like she wanted to be straight up and down. The therapist thought she was ready to "stand" so she put her up to straight. We put the tray on the apparatus and put a toy on it for her, and she went to town. She was so active, controlling her head, and being accurate with her hands. Greg and I both agree - we need one of these at home! I will look into it when we get home. I'm sure it is costly, but insurance should cover most of it, and if not, I'll get a weekend job!
The worst part of the day was the skin biopsy. I remember when my mom had one on her heel - and it wasn't pretty. They took it from the inside of her upper left bicep. She was numbed (which made her cry so hard she nearly held her breath for a minute), then the doctor came in and took the chunk out of her arm. And by chunk, I mean chunk - like a pencil eraser. Then she was sewed up with two stitches. I've seen a lot of things done to her - but I've never seen "meat". I'm glad I was on the feet end of her and Greg was on the head end. Those stitches need to come out in 10-14 days. We see Dr. White in 9 days - maybe he can take them out then.
After our traumatic morning, we headed back to our room (via the subway - it was only in the 40's today) and took a family nap. It was wonderful. I think we all slept at least two hours. Then we were off to dinner, Applebee's, where we called the big kids, and then a little shopping before a perfect dessert of Coldstone ("Chocolate Devotion" is amazing, by the way). Back to the room by 9:00 (central time). Allison is now down for the day - and Greg is pretty close.
Tomorrow we have our final appointment in the afternoon. We are meeting with the same neurologist we met on day one. She will go over the MRI results with us, as well as any labs that have come back. I'm hoping that we leave here with some answers. I have no idea what to expect: Will we be asked to come back in a month, 6 months, a year? Will Allison need more tests back in MI to follow up the tests that were done this week? Will we get a diagnosis? Will it be curable or at least treatable? Will she have a quality of life? Boy, I wish this appointment was not at 2:45 in the afternoon.
We are checking out of this hotel tomorrow, since we think we will be done by 5:00 here in Rochester, and if we can put in 3-3.5 hours of driving, we can make it to Madison, WI, which will make our drive Friday only about 6-7 hours instead of 10. Maybe we can actually stay in a hotel that has a little bit of walking room between the furniture - and a continental breakfast.
Please continue to pray for wisdom for the doctors and determination for Allison. So far, she's put up a good fight.
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