RESULTS ARE IN!
We’ve been waiting awhile to hear what we were pretty sure we already knew- Jack does not require the Biotin and Vitamin B1 (thiamine) any longer. Need a refresher? He has been taking a high dose- 8 times the adult daily dose- of each since his stay in the ICU for the off-chance he had an autoimmune metabolic disorder that might have contributed to the brain damage seen in his early MRI.
Ultimately it’s good news! Jack had a full exome sequencing done and there’s nothing atypical to suggest he has the Biotin-related disorder or any other metabolic/neurological disorder either.
So now we just carry on with his rehabilitation to make sure he continues to progress.
JACK’S THERAPY
What is he up to lately? Jack has the following therapies 1-2x per week:
Physio
Working on squats and squatting to stand, cruising furniture/walls without leaning, with the goal of both standing and walking unassisted. Matt and I challenge each other to remain patient. The progress sometimes feels slow but he is undoubtedly getting stronger.
Occupational Therapy
We’re focused on two-handed play and overcoming the hemiplegia (paralysis) seen in his left hand. Encouraging both a natural opening of the hand and a natural rotation in his wrist. His skills are continuing to improve in both areas.
Speech Therapy
Working on annunciation and building up his vocabulary. This is relatively new- he tries to say lots of words and isn’t far off what is considered a typical level of development. That said Matt and I know the brain damage has affected his speech because pre-trauma he used to annunciate words and sounds more clearly.
Feldenkrais
A movement-based therapy focused on the brain-body and skeletal connection to work on improving his existing gross motor skills, functionality and balance.
He will still require the odd specialist appointment as we work through his recovery and rehabilitation. He’ll continue to see a neurologist, and will need a follow up MRI (likely in the fall).
Other than that, Jack is one happy little toddler. He loves reading books, playing with trains and his kitchen, riding his car and wooden strider tricycle, and hanging with family and friends. And food. For being such a little guy, the kid loves food! Truth be told there aren’t many things he doesn’t like. This little lion heart (aka monkey) constantly has us laughing along with him.
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The Boy Who Breathed Again 
Lew kehoe
What a beautiful summary! You both are commended for making such great and dedicated
contribution towards Jack’s progress. All our love — Nana&Papa
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Ron Kovacs
Really great news. Hope you and Matt are doing well too. Maybe at some point Matt will be able to play pro hockey again.
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Jeff Dwhytie
Matt and Rena
Thanks for the update I ask Craig when we talk how Jack is doing and it is nice to hear he is doing so well. Great news and continued success on his rehab. Thinking positive thoughts here. All the best Doba and Cherie
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theboywhobreathedagain
Thanks guys! Hope you’re doing well as well!
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Auntie Pat
This is all such good news. Jack the sweetheart. Great job Mom and Dad!
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Cheryl A Dwhytie
So happy his progress continues. He will get there, just in his own time. So glad you share these improvements. We take too many things for granted and your updates keep us enlightened and humbled
He is such a cutie. Keep up the good work.
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