I was looking for pictures to use for a "This Time Last Year" kind of entry, but couldn't find any that weren't in the hospital. And then I remembered that that's because we spent most of this time last year in one hospital or another. Mid-January was an emergency trip for retching and ultimately created more problems than it solved, including seizures and apneas. Soon after being released, we started our series of trips to Cincinnati Children's Hospital for tests and second opinions of all kinds and, ultimately, initiation of the ketogenic diet. At that point, Collin had just begun to open his eyes more regularly. He didn't cry or react to pain, made hardly any sounds, had no head control, and had just started moving his legs again. We had no seizure control and he was still being fed by a feeding pump to decrease retching.
This past week was the anniversary of our worst hospital stay ever and we spent it in semi-awed thankfulness. Collin can lift his head from his tummy. He can sit in his bumbo. He can watch a video. He responds instantly to touch, sound, light, and movement. He is eating whole foods through his g-tube at regular meal intervals with no retching. He has been seizure free for over six months. He hasn't stayed overnight at a hospital for 11 months. He cries when he is uncomfortable or upset. He grouches when he's mad and laughs hysterically at a wide variety of stimuli. We have so much fun and Kyle and I look at each other in disbelief almost daily.
This month is also the anniversary of our involvement in the NACD program. Monday was his one year reevaluation and I remember so vividly our initial evaluation, in which Bob Doman squeezed Collin's foot (getting no reaction) and said, "Yep. His brain isn't getting much information." It was hard to hear and yet relieving somehow. This reevaluation had a very different feel, particularly when we discussed starting to structure some alone time for Collin throughout his day. Apparently, he needs some more time to just be on his own so he can process and practice the things he's learning. It honestly crossed my mind that he might be joking at first. I've spent the entire past year trying to stimulate Collin during each of his waking moments, knowing that if I left him alone, he would stare off into space and/or fall asleep, and now I'm supposed to make sure he has alone time? Surely we couldn't be talking about the same boy? This morning, he started to get grumpy during one of his program sequences, so I put him on his tummy and left the room and, sure enough, I came back to find a happy, wiggling Collin. It's hard to believe that one short year ago, we had a son we barely knew and who now is becoming independent enough to need time away from us.
POSTSCRIPT - Immediately after I posted this the first time, Collin launched into a super scary hour-long retch fest that got him put on oxygen to keep his lips from turning blue. You know, just to keep things interesting.