Yup. I said it. Stroke. I bet some of you didn't even know that Charli had a stroke. All I ever talk about is seizures, seizures, epilepsy. Not that there is anything wrong with that. But lately the dusty recesses of my mind have been stirring, and I realize now that I've let the stroke part of my advocacy brain lie dormant for too long. And for that I apologize. Time to devote (or try) equal time. This comes at a time when stroke issues are (at least we think) more of an issue now than have previously presented themselves. (Hence the KKI feeding eval) 1 in 4000 babies will suffer a stroke in either the neonatal or perinatal period. When Charli was born it was barely noticeable. A small lip issue. Larry noticed it. Everyone thought he was just being hyper critical. Little did we know that within the next 12 hours shit would hit the fan like we wouldn't believe. Charli (come to find out several months later) has a clotting disorder, as do I. Factor V Leiden mutation. It is a hyper coaguable condition which increases risk of stroke, clots, and miscarriage. Casting and surgery usually require an anticoagulant therapy, and birth control is a total no no. In the beginning the initial MRI showed what they said was a "bilateral MCA infarct" meaning both sides of the brain, middle cerebral artery infarction. Or BIG STROKE. Come to find out in Detroit that wasn't quite the case, but the stroke was significant enough. It almost completely wiped out the left side of her brain, and her right side does have abnormalities. Thankfully it was fully formed, unlike her left side. Charli didn't begin to show signs of her stroke until she was about 5 months old. That was when I began to notice her left sided preference for trying to do things. Not that 5 month olds are doing that much... but I noticed. It was then I knew we didn't escape unscathed as I had hoped and prayed everyday. Her tone had always been symmetric and equal. I thought...maybe, just maybe...we were ok. Boy was I wrong. In over a month we would have the seizure disorder, and life as I knew it (when I thought it couldn't get any worse) got so much worse it's unspeakable. But I speak about it, because it needs to be told. For the first few months I couldn't even say the word stroke. If I said it, then it was true. How could my baby have a stroke. Babies don't have strokes. Old people have strokes. (of course Larry had to go and prove us all wrong by having a stroke when the baby was 6 months old...which you all probably didn't know as well. Spontaneous carotid artery dissection) 2 strokes and a catastrophic seizure disorder in 6 months. And people wonder why I need xanax.
I had a purpose...then the song just changed on Pandora to Metallica One and I lost all ability to think past "GET OFF MY COMPUTER".
Most people often think of stroke and think paralysis. That usually (or often I suppose) is the case. Charli is right sided hemiparetic, meaning she is not paralyzed, she has movement, it is just not very volitional. Which is why she gets every therapy known to man. To increase her muscle re-education and prevent atrophy. She has gone through 5 hand splints so far (I think..if memory serves me correctly..and usually as of late it doesn't) has one that still works, her AFO and SMO, and a scoli vest which she has worn probably once. That didn't go very well. The problem with hemi kids (and now by that term I mean hemiparetic and hemispherectomied) is they have weakness (obviously) so she tends to be the leaning tower of Charli. This has caused a slight functional scoliosis. It is beginning to get better as she is able to strengthen her core muscles and sit upright for longer period of time. She has also developed the ability to lean forward and back up again in a sitting position, and has some righting ability while sitting up. These are all things that prior to surgery were non existent and not even on the horizon. Charli was not able to sit up prior to her surgery. Mostly due to seizing which was controlling everything at that point (which is why I rarely talk about her stroke).
I really hate ending a blog like this. abruptly. But literally, all thought has left my brain about how I wanted to write. My brain is a cycling of thoughts at all points in the day, but I am currently unable to get them out now. Which frustrates the hell out of me. Well, I guess this is how it's got to be til I can collect my thoughts again. The main purpose of all of this is that Charli isn't just epileptic, she is a stroke SURVIVOR, and that every day there are more stroke survivors born, more lifetimes of therapy. That can't and shouldn't go unnoticed and people need to be aware of the symptoms and the frequency that pediatric stroke occurs.
Ok, so I'm out. Like trout. Til next time.... remember Kids (even BABIES) have strokes, too.