Gosh, how we love you all. I just wanted to share some clips of our day yesterday 4/15/19, Alec doing occupational therapy and me singing🎤 ABCs!
We are day 89 post transplant of new cells to stop this disease progression!
Alec is still getting weaned off sedation and as of today he’s at a very little amount it’s like 0.35 every 12 hours. Not enough to really sedate it’s just to make sure he doesn’t withdraw, which he was kinda set up for withdraw given how long he’s been sedated but were gettin there. He’s also on several other meds that can keep him drowsy but by now the average kid would be talking and more alert. We know Alec isn’t average, his diagnosis is so rare and so sensitive. We are expecting a miracle, I am not giving up until God tells us.
As you can see Alec’s skin is peeling and his hair/eyebrow color looks different but he still has his BIG BEAUTIFUL BLUE 💙EYES👀! He also has his strong inner soldier coming out, I know he believes and I believe with him and for him when he doesn’t feel strong enough. We won’t stop fighting.
Okay- Alec’s army I am leaving this here for you and don’t forget to like👍🏼 and subscribe❤️ and hit the bell 🔔 so you don’t miss any of Alec’s updates!
You can add me on Facebook and request an invite to Alec’s page or msg me if you can’t find it, he has a caring bridge but I’ll be honest I don’t update as much on there.
Also I want to thank every one for not only supporting us emotionally but financially We are so blessed and thankful for the go fund me Alec’s teacher created. I’m not working or getting any income so this has helped so much!
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Caring bridge
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Go fund
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