Yesterday's Dr. Appointment

So we went to see Dr. Atkins yesterday about Alex's scoliosis and some other issues. What an ordeal. First, Alex thinks the funniest noise in the WHOLE world is the sound of the paper that they put down on the examining tables...so that started one of her manic episodes. Laughing, pulling her hair, etc. By the time the Dr. was done examining her the paper was literally shredded, I felt like I was dealing with an octopus! Then off for x-rays - in her chair, out of her chair, in her chair, wrestling with her, out of the chair, in the chair, out of the chair, into the car...I was sweating when we left!!

The end result is that in a lying down position the degree of her scoliosis has not changed...that's the good news. The bad news is that her postural curve, meaning how she sits, has gotten much worse. She leans so far to the right that it's affecting how she uses her hands. So next Friday we go to have her fitted for a brace that she will wear while she's in her wheel chair or stroller, or for any other sitting activities. We don't want her in the brace the entire day, because her trunk is so extremely weak that she still needs to be working on strengthening those muscles while she's in her stander, walker, etc. The other half of the appointment we talked about how Alex has lost some of her skills. For a few months Alex was doing amazing with her walking - taking steps without prompts in her walker, weight bearing for long periods of time, sitting, etc. Now she refuses to sit independently, she wont weight bear for longer than a second and she wont take any steps in her walker. So she's being scheduled for an MRI of her spine to see if there's been any damage, and she also wants me to talk to Alex's neurologist and have an MRI of her brain done at the same time to see if there have been any neurological changes. The part I hate is that she has to be completely sedated and because of her neurological issues, she's at greater risk for things to go wrong. Dr. Atkins is a wonderful doctor and she truly sees the whole big picture - worrying if I'm lifting correctly, if I'm getting enough rest, etc. but she did mention something about the urgent need to get her weight bearing because if she can't start transferring herself (even with support), that as she gets bigger and heavier, alternatives to look at were basically to move her into some place - granted she was referring to year's away, but it's just not an option I would ever entertain - just the thought of her not being down the hall from me terrifies me. I'm trying to keep my glass half full, but I got total flashbacks to five years ago when all we were doing was testing, testing and more testing, the projections were always worse case scenarios and it was never ending. I had a pity party for myself and cried on the way home because sometimes this roller coaster ride is just too much. Her cognitive skills right now are getting so strong and we were so happy with all of the motor skills she was acquiring too that it just seems so unfair that it was so short lived. I know God has a plan and will get us through, and I hope months down the road we will look back in hindsight and know why...every time we've dealt with blows, we've been blessed in some way.