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The debilitating and agonizing pain the would drive me into a manic state mercilessly trying to find him relief started out like this. Then a misdiagnosis at Riley Children’s Hospital in February. Too many steroids for bullshit pain management that would eventually shut his adrenal glands down causing his adrenal insufficiency……too many trips to the ER here with no resolution. No one ever checked his head which I will never understood. Pain management doctors that didn’t believe me and over 30 hospitals and universities called in about 3 months time. Finally we would end up at Lurie Children’s Hospital in May and Adler was in critical condition by that point. And we are still there. And he is still here. He is still here. What. A. Journey. Bold As Love. 🅰️🌈⚓💙

by | Dec 20, 2020 | Updates From the Road

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

Christmas shirt day 🎄🎅⛄🦌 Just wait until you see his full Christmas outfit for tomorrow!!! As he sat down at his desk and the door shut, I kept looking through the window in the door. My eyes filled with tears and I couldn’t help but feel the waves of emotions hit. Thankful. Grateful. Happy. Joyous. Mixed with Sad. Helpless. Angry. Fear and Worry. Sometimes even when it’s “ok” the weight hits. The gravity of this journey is intense even in the light. He had pain last night. The same pain he had before. In his leg. He’s had it a few times since his chemo break. His walking is a little off too but they are keeping an eye on him. We shall see what the next MRI shows. Even with an “insignificant” change and reasons behind it that fit and make sense it still stirs up all those emotions I just typed. As it should. He does have cancer. Things aren’t steady even when they are. But he’s there. At school. In his Christmas shirt. And that’s fantastic for today!!!! One day at a time. Bold As Love.🎄❤️❤️🎄

by | Dec 16, 2020 | Updates From the Road

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