Yesterday Holden continued to sleep until the afternoon. After sleeping for almost 48 hours, just waking up here and there, he woke and gave us some smiles and played for a few hours in the afternoon. He wanted sit at the dining room table and play with toys and watch his iPad like he has always done. He started to get tired again when he was sitting and fought so hard to stay there. He tries very hard to do "normal" things. He actually fell asleep at the table and that was it for the night.
He woke up this morning, was in a pretty good mood and stayed awake until 2pm. His body is definitely tired and weak and moves around much slower than he used to. We call these "good days" but that's a relative term. It seems like we recalibrate what "good" means each day.