Once we hit October, we were about a full month into living with our diagnosis. I was making 2-3 trips to Peoria a WEEK (45 minute drive) and we were TIRED. The fact I was so scared and lost in that "giant" hospital about a month ago and now I knew it by the back of my hand was.. something. Not something I wanted to claim, that's for sure. Ax did so good for all our appointments. He never minded all the strangers talking to him and poking him and not minding their own business. He was a rockstar. Every. Single. Time. How relentless he was always and still does shock me. He was still grasping the concept that he couldn't move as much as he used to. He couldn't get out of bed when he wanted, he crawled less, it was hard for him to push up on his arms, and he needing assistive devices to be comfy. After we got his diagnosis is August I feel like we hit a steep decline right away. But that's how MLD works, steep decline then plateau, over and over again. He was still always so smiley. No matter how hard things got, the pain he was in, he would find the strength to smile for me.
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