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He woke with a headache today. Weather maybe, chemo maybe, no matter I got the diffuser going with It’s All In Your Head oil in it. Turned down the lights and I asked if he wanted a bunch of guys to hold. He smiled and said “Sure if you want to”. So I did. And as I was looking for a specific one I shook the blanket and a couple fell out. One being Knuffle Bear named that because he had a bunny just like the bear and called it that after the book. I read that to him all the time, Knuffle Bunny, a great book!!! Anyway….. That bear was with Adler upon his first trip to the ER at Lurie Children’s Hospital. He was 4 and so sick and in so much pain. That was the trip that would determine his hydrocephalus and the tumors. We wouldn’t leave for a week after that. That bear was with him the entire time and the nurse that checked him in also checked the bear in too. That’s the band around his arm. We’ve never taken it off either. Never will. I touched it remembering when they put the band on him and on Adler. Sweet little Adler. Such a journey.

by | Jan 17, 2021 | Updates From the Road

from Life with our little Super Hero Adler Bear https://ift.tt/3aDpcoP

The first two are from July and August of 2019 from his biopsy. The next 4 are November, December and January from his spinal decompression and fusion. Surgery in the same place twice. Two different neurosurgeons. Both life saving. The first he lost the use of his arms. The second, 3 months in a neck brace 24/7. He’s here and healing. Again. This week we go to Chicago to see about weaning him out of the brace. Bold As Love 🅰️🌈⚓💙

by | Jan 17, 2021 | Updates From the Road

from Life with our little Super Hero Adler Bear https://ift.tt/3aDpcoP

So. Adler is home with a headache. My eye isn’t any better yet and we are just kinda fucking miserable and BEYOND over it. BEYOND over it. He made it to school one day this week. I called Chicago about this yesterday and as I assumed not much they can do. We see his neurosurgeon next week to discuss weaning him out of the brace and I will bring up said issues he’s having to him. One of the two neurosurgeons. Because he has two. Two now. Basically what they said, with much sympathy between both nurses, was he has tumors which cause pain. He’s on treatment which has side effects. End of story. But we live on the pages of that story and it sure does just suck sometimes. He’s been having a rough time. And yeah, so have I. So today with the gloomy weather we are feeling it. Feeling the suck. Man. We sure are.

by | Jan 15, 2021 | Updates From the Road

from Life with our little Super Hero Adler Bear https://ift.tt/3aDpcoP
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