September 21, 2010
Charlie had his first appointment with his Neurologist today. The Doctor was great. He spent a while with us - asking good questions about Charlie, listening and looking over Charlie's short but complicated medical history. He was very personable and very thorough. After a physical exam, he said that as far as he can tell, Charlie seems unaffected by the stroke. Charlie shows complete symmetry of movement. He mentioned that while physical and mental symptoms of the stroke may still arise, his current status is good. He recommended that we NOT begin work with ECI (Early Childhood Intervention) because there is no current need. He said that as long as we keep engaging Charlie physically and emotionally (ie. massage and touch therapy, face time, singing, playing, audio and visual stimulation, etc.) we can help him to maintain and grow his range of motion ourselves without taking him to occupational therapy clinics. This of course could change if a left side weakness presents itself.
The Neurologist asked that we have a follow-up MRI in two months. He will then compare the picture of Charlie's 3 month-old brain with the MRI that was taken in the NICU showing the original bleed. If the MRI looks good and if Charlie remains seizure free between now and then, he'll consider weaning Charlie off of the Phenobarbital. As a side note - I have to say that the daily dosing of drugs is the most heinous thing about our day. I hate it. Charlie hates it. Don't misunderstand me - I am grateful that it keeps him out of woods for seizure activity, but Phenobarbital is a nasty barbiturate. After taking it, Charlie gets pretty loopy droopy- he can't maintain eye contact, his gaze darts quickly around the room, his breathing becomes a little labored, he chokes, he twitches, he gets dry mouth and dry eyes. So the sooner he can get off this drug, the better for us all. But all in all... it was a good appointment and we are thrilled to hear yet another doctor say that Charlie looks good and currently unaffected by his brain hemorrhage. Music to our ears!