September 21, 2010
One Month Check-Up
Charlie saw his pediatrician today for a one month check-up. Charlie is still gaining weight very rapidly. He's almost 10 pounds (that's 3 1/2 pounds since birth) and 23 1/2 inches long (almost 3 inches since birth). The doctor visit was certainly a reality check for us - a reminder that every doctor we see is looking for signs and symptoms of his brain injury. And sometimes, they will find them. Charlie is going to start meeting with an occupational therapist through ECI next month. He is, as of this week, showing some physical weakness in his left arm and hand. He also keeps his left hand balled up in a fist most of the time. So we'll begin hosting therapists at our home once a month to make sure that Charlie is doing well. They'll teach us little exercises and games to play with Charlie with the goal of reminding him that he has a left arm.
I asked our doc about some serious spitting up, choking and gagging that Charlie is exhibiting. She put him on a drug to help him with what looks like acid reflux. She mentioned that one of Charlie's repetitive physical actions - he arches his back and neck a lot - is both a symptom of reflux and also an early physical sign of Cerebral Palsy. So, we'll treat the reflux and hopefully he'll stop arching backwards. When our doctor mentioned Cerebral Palsy, I must have gone a little pale, because she immediately began to reassure me about Charlie's progress and signs of his vigorous health, etc. She said that while Charlie is doing very well, its our job to be vigilant on his behalf. He is after all a brain injured stroke survivor who is also navigating a skull fusion, various kidney issues and some lingering heart abnormalities.
So these are our two realities. The first reality: Charlie is a beautiful baby who amazes us every day with his sweet face, his strong will and his refusal to accept his diagnosis. He has already brought us deep joy and eternal gratitude. We continue to move forward, assuming that in the long term, Charlie will be unaffected by his brain hemorrhage. The second reality: Charlie will be fighting this battle for years and years to come. There will never be a moment when a doctor says, "You don't have to worry about Charlie's stroke any more". We'll always be looking, analyzing, worrying.