This is a down week for Ryder. I just don’t understand how leukodystrophy can cause these up and down patterns I’m seeing in Ryder. It seems like its 2 weeks up 1 week down. I just don’t understand how his brain is working like this??? He is in such pain having a BM the last several weeks. I called the doctor about it, but they feel its just gas because he is still having soft BMs. I watched him tonight and he was just screaming in pain while having a bm. Its been at least a month---daily of this pain. I’m not sure what is going on. I’m going to call the GI tomorrow.
Today Ry seemed so weak. He wouldn’t hold his hands up for us to pick him up. He’s been waking up at screaming and not easily comforted. He continues to cough/choke when he eats and drinks. This all sucks so much!!!