Photos before SDR

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A bit about Gracie...

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   Family photo 2019  Our daughter, Grace, was entrusted to us by God when she was about to turn 3 years old. Our journey with cerebral palsy, epilepsy, global developmental delays, feeding and swallowing issues, initial severe malnutrition, limited fine motor and gross motor, multiple surgeries, exploring alternative communication, and so much more has been an adventure, to say the least!  Baby Gracie   T his princess, now a teenager, is the first born of our 6 children and has paved the way for her rambunctious siblings. We have been blessed by many different inputs into her life. She has attended American public schools, private therapies, Ugandan schools, and homeschool.  She was the very eager guinea pig in the start of a one-of-the-kind integrated Ugandan school in the north and an enthusiastic participant in a well established self-contained special needs classroom in central Uganda.   All along the way, and around the world, we have h...
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SDR day 11

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 Daily Gracie is gaining strength. She wants to pull to sit. She's recovering balance in sitting and she has started sit to standing. She holds a stand for about 3-8 seconds now and is actively participating in stand pivot transfers. She is so excited for therapies. She receives 3 hours a day of therapies: speech, occupational therapy, and physical therapy. She's been a bit insecure and wants a parent with her constantly. Not sleeping great. But her pain is well controlled for the most part on valium (for muscle spasms), Tylenol, and Motrin.  The kids got to visit one by one! More and more comfortable sitting in her chair for longer stretches. A bike ride! Still passive leg movements, no attempts to really push much through her legs, but she enjoys it and doesn't resist it. 
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SDR complete!

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Gracie's surgery took over 6 hours yesterday, making for a very late night! Her neurosurgeon said that it went well but that her nerve signals are very confused. The brain damage that caused the cerebral palsy when she was a baby has resulted in all kinds of mixed up signals going to her legs, which explains so much of her movement challenges. Needless to say, it took quite meticulous and patient work for the surgeon to trace the nerves and figure out which ones had the most dysfunctional signals to the correct muscle group. Her surgeon is not sure how much capability she has for building significant muscle strength with such dysfunctional nerves.  She's very comfortable, resting in the ICU with an epidural for pain control. She has woken up and "chatted" happily but still groggy a few times. She has moved her legs a bit (which I'm happy to see) and her legs are soft with no clonus!
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