Tuesday, June 15

Chemo Round 2, Day 8

Collin had a great day today. During physical therapy, he sat unassisted on the floor mat for quite a length of time, and played with some toy cars. Then we helped him stand at a small bench to play with a puzzle. He still needs to be held up to stand, and his legs need to be supported so he doesn't hyper-extend his knees, but at the rate he's progressing, it won't be too long until he's standing. He's managed to get himself onto his knees holding onto the side rail in the bed twice in the last twenty-four hours. Now when I step away from the bed, it's not enough to just put up the side rail; I need to pull down the top plastic part of the bed so he can't topple out over the side rail. The physical therapist is starting to think about what equipment he may need when it's time to go home; she's going to work with him using a tiny walker, and will determine if he will need leg braces to prevent the hyper-extension of his knees. During occupational therapy, he threw the ball and is using his right hand more. Then he sat in the high chair and played with the talking book, turning the pages and pushing different buttons. The speech therapist fed him tiny bites of cookie, he enjoyed the treat. But he still has a very weak chew and has difficulty moving the food around in his mouth, so it works better if he can have a sip of liquid to help wash the food down. Today he was able to drink from a sippy cup without the valve in it. If he's reclined enough, he can hold the cup with two hands and drink by himself; in the high chair he needed more assistance because he sits straighter in it. I realized that when we go home, I'll probably have to puree his food so that he can continue to eat without choking. He was very enthusiastic about lunch today, but at dinner time he was fussy and kept pushing my hand away. I asked Neya to try feeding him, and he opened his mouth right away for her. She'll be a good helper when we're back home. The two of them enjoyed playing again tonight, and Collin tried to talk to Neya on the phone today. They really miss each other.

Collin still sounds really congested at times due to the mucositis, and every so often he gags on the mucus in his throat. He has c-diff again because his blood counts are way down and he barely has an immune system. He had a dose of Morphine this afternoon because his belly was hurting him; it was rumbling so loudly I didn't need a stethoscope to hear it. He may have been having cramping due to the c-diff. His tube feed will be increased to 20 ml/hr tonight since he tolerated 15 ml/hr well for the last few days.