Made of Gray

Quick Updates

Holly D Gray3 Comments
Over the past three weeks, Texas has decided to skip winter and roll straight into spring. I'm ok with the turn of events seeing as I really could care less about winter. So we've been outside, living life and running around like crazy. In an effort to keep everyone up to speed, here's another hodgepodge of quick updates.
FEBpark
For the past month, Caleigh has been all over the place with her dystonic movements. It's exhausting for me and very frustrating for her. Holding on to anything for more than a second just didn't happen. She briefly complained of growing pains in her legs, and generally had a bad 3-4 days in a row around the beginning of February. At one point her dystonia was so strong that her equipment was causing major bruises to her arms and legs. She spent a lot of time on the floor and with us doing stretches. Eventually, Caleigh began to sleep better, but her control just wasn't coming back. That is until this past Saturday. It was like a switch clicked on in her little body. Her muscles caught up and Caleigh's limbs became hers once more. We've been able to take the headrests and homemade padding off of her equipment. She is independently sitting for longer periods of time. She can reach, pickup and hold a paint brush for longer stretches now. She's a much happier little girl.
She's only willing to sit up nice and straight for Dora. #specialneeds
With this last growth spurt Caleigh has slimmed down and shot up. This past August she weighed 39 pounds. As of today she weighs 34 pounds. I'm guessing this was one of those fatten up to slim down scenarios. All of her summer clothes are falling off of her and her swimsuits are way too big. She'll grow back into the small and mediums, but I wish there was a warning before I had given away all of her 4T/5T clothes. I never in a million years thought she would lose that much weight. Always a surprise. Usually losing weight for kids with CP is a bad thing, but for Caleigh, this seems to be right where she needs to be.
MARpaint
Homeschool is going really well. We are closing in on 11 weeks so far. It really has flown by. Caleigh is still doing art class, weekly library visits and her regular therapies as supplements. I plan on devoting a post specifically to homeschool at a later time.
MARpaint2
Caleigh's feeds are now only on for 13 hours a day. That is the shortest time frame that I can remember in years. Most of her feeds are at night with the exception of traditional meal times, three times a day. Caleigh has been antibiotic free for three months now. The bacteria is staying at bay. It's amazing how flat her little tummy can be without the inflammation from the bacteria.
Let me outta here!
Upcoming appointments include neurology and endocrinology. We are patiently waiting to find out about botox, casting and the status of Caleigh's premature adrenarche.

There are a lot of posts that I plan on adding in the next few weeks, but I wanted to get the medical updates down for now.
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