Here is what we found out today. I hope to explain all of it properly. Forgive me if I come back later and edit as we learn. The diagnosis is confirmed as right side hemiparetic cerebral palsy (now known as RHCP on this blog!). The MRI did show an injury/infarction to her brain in the internal capsule and deep white matter on the left side of her brain, hence the right side hemiparesis. (Already I'm not sure that's the proper way you'd describe it, but those are the areas of the brain that are mentioned in the radiologist's report. A Google search of those two terms, while rather medical, gives you an idea of what these areas are.) While this tells us what the damage is, we still don't know, and won't know, what caused the damage. It is likely from an in utero stroke, but also could have been from an infection in utero. By the way, an infarction is a more technical term than stroke that is used to denote a process of tissue injury most often caused by the interruption of arterial blood flow to some part of an organ, in this case the brain. Dr. McClintock believes the damage affects only motor skills on her right side, the arm more than the leg. He believes she will walk at some point, but that her hand, despite physical therapy, will have some lasting 'sign' of the RHCP. He does not believe she will have any issues with cognitive/intelligence and that her speech should not be affected. Also, because of the location of the damage in the brain, her risk of seizure is less than he would have told us before. Imogene's right eye has appeared to wander intermittenly lately, so we'll see a pediatric opthamologist soon. He said that the location of the damage would explain this, and that she is at the age where such an issue would show up. Dr. McClintock also recommended we see a physical medicine doctor, also known as a physiatrist. This is a nerve, muscle, and bone doctor who treats injuries or illnesses that affect how you move and help manage all the different individuals involved in care. Finally, Dr. McClintock ordered some bloodwork for Imogene to test her for a common genetic disorder that runs in my family called Factor V, which affects the body's blood clotting abilities. This test can be run while we are at our regular pediatrician for her 9 month check-up in October. We will go back to Dr. McClintock in March for a follow-up.
So phew, that's what we know from today. I'm sure we will understand all this better as we learn more, and I'll try to share what I can figure out to share! Thanks all of you for your concern and care.
A little story about Lily. We went to the park today with some friends. If you know Lily, she's not always the most adventurous kid. But today she surprised me and rolled down a hill over and over again. She had the best time and was so proud of herself. What fun.
Was thinking about you when I went to sleep and when I woke up today. A relief to have some 'knowns' to work with. I really like the pediatric opht. we had, if you need a suggestion. molly
ReplyDeletei agree - i'm glad there is some sort of diagnosis. imogene is very fortunate to have such proactive and concerned parents - it seems like so many of her 'issues' may be worked through with a lot of dedication on your part. you are so strong and i think about you all the time!
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