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

 This 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 homeschooled her and her siblings, using different curriculums, different schedules, different methods. We've also been able to be involved in educating and supporting families with many different special needs. 

I am a medical doctor, particularly focused on the care of children with special needs.  My husband is a pastor, specifically focused on equipping and strengthening the local church.  Unique needs within our own family include a broad spectrum including ADHD, delayed learners, gifted learners, dyslexia, precociously early readers, nonverbal, overly verbal ;-D, executive function struggles, mild sensory issues ... you get the idea!

I'd love to share with you ideas that have worked for us and our friends! 
(And some things that haven't worked, but might work for you!)

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 Gracie's recovery is progressing in leaps and bounds. Today she did several transfers in and out of her wheelchair and I took her out of her room in her wheelchair twice for >45 minutes. Her pain is well controlled. She has very limited active movement in her legs. Significant jelly legs! I'm doing a sort of stand pivot transfers but she's really not doing much to help with the standing part of that transfer. She was a GMFCS level 4 (scale of function) so her muscles have not had much chance to develop behind all that tone. Yes, it makes me nervous but she is also already so much more comfortable (excluding the post-surgical pain) that it looks like we're already achieving one of our goals (1. Pain reduction, 2. Medication reduction, 3. Improvement in walking and standing).  She's transitioned over to PO/G-tube meds so she really could be ready for transfer tomorrow to rehab if the bed were available. I'm anxious to start more intensive PT! Here we are soaki...
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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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