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2 days ago, Adler walked into Magic Kingdom. He hasn’t done that since he was 6 on his Make A Wish!!! And even then after a few hours we got him a wheelchair. Not this time. Not to say he didn’t have pain because he did. He got very nauseous at dinner too. And some natural worries and fears were discussed while dodging the rain as we walked to Space Mountain, one of his favorite rides. Aaron’s taken pictures of us walking in every time even if I’m pushing him!! Even one time Adler got out of the wheelchair just to walk in and then got back in. The tradition continues!!! Walking!!!!

by | Aug 8, 2021 | Updates From the Road

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Last day. It’s bittersweet for sure. Is the pain gone, no. But. It is less and it’s managed and manageable. He’s stronger. More stable and balanced. The improvement in his body is noticeable and proven from his testing. Adler worked his ass off to get here. He gave it his all every day. Every day he showed up. No complaints he just did what he had to do. Adler has known no other way of life. So. Now with the tools they have taught him how to use and that he’s mastered while he’s been here, hecan take those home and continue this new way of life as his own pain manager!!!! Proud is an understatement. We thought this way of life was unattainable but it’s not because he put in the work to make it happen, to change his pain and he did it. What a HUGE accomplishment!!! It took a team of experts and the right fitting pediatric program at the right time for Adler to make it happen. Nemour’s Children’s Hospital is fantastic and we cannot be more pleased with how it all went. I am so glad I chose this hospital and this program!!! He has a 3 month telehealth check up with the doc and then we will come back for a 6 month follow up. February will be a nice change from 100+ degree days. And. Now. Let the well deserved fun begin!!!

by | Aug 6, 2021 | Updates From the Road

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He was looking for school supplies online before bed last night. He wants this to be “the most normal school year possible”. And I hope it can be with his pain being managed. He had a really rough evening with nausea. It was yet another giant reminder of the things in his life that we are desperately trying to work through. To handle. To accept. To live with. LIVE with. Not just survive. Lots of talks about identity and survival mode this month. There’s so much more than just pain. A depth to it all that is often indescribable only felt. And that depth holds both good and bad. Light and dark. Love and hate. It’s all there in the deep. Today he tests again to see his progress from the beginning to now. What a journey this has been.

by | Aug 4, 2021 | Updates From the Road

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