Today was quite full but also quite fulfilling. Alyssa had her EEG today at 1PM which worked out pretty perfectly. She spent the day at school as usual aside from having to skip snack time. Then, I picked her up to avoid her passing out on the way home. We managed to make it across town to the neurologist’s office with her still awake! When we arrived we still had a bit of time until her appointment so I opened a magazine to pass the time. My daughter? Yeah, she’s pretty much amazing. I went through a bunch of pages and I’d ask her “Aww where’s the baby?” She would hit the part of the page with a baby on it! One page had a dog and a cat and I went back and forth asking her to show me the dog or cat… she kept swatting at the correct one. Ah I cannot believe how quickly she is learning 🙂 .
She passed out pretty quickly for the EEG and stayed asleep while they hooked up her “dreadlocks” to find out what we could about what’s going on in her brain. It was a new tech so it took a bit longer to get everything set up but the important part was that she stayed out for long enough for them to get a good reading.
Once we woke her up and got a bit of an awake reading we were told we could leave. Every other EEG she has had the neurologist spoke to us after. I asked if instead of leaving if we could wait around to talk to him. It was such a great discussion. We have gone back and forth on adjusting her meds. It’s such a challenging situation because seizure meds carry such high risks. However, she’s three now so the risks are decreasing. The EEG showed that Alyssa is still spiking quite a bit when she’s sleeping although her seizure activity is absent when she’s awake. After a bit of discussion and review of the EEG we decided that we’d never know if we could get it to stop without trying. So, once Alyssa shakes this cold we’ll be starting her on the new medicine. The new medicine has a risk of affecting her liver and/or pancreas so we will have blood work done in two weeks. Assuming that comes back OK we will begin weaning her off of one of the other meds she has been on.
As worrisome as the side effects are… the ones of the med she has taken since birth are not much better on paper. It will work out how it’s supposed to. I’m just hoping that this medicine is able to help her with the spiking that is occurring while she sleeps. Her neurologist said he’s excited to see what happens if we can get it to stop because she is already advancing so much with her brain working so hard while she’s asleep. I know that if this med doesn’t work then we will simply keep searching until we find something that does! The challenge with seizures is that it is always a chase. Just when you think you’ve got them regulated… BAM! … nope! Ha! Luckily for us Alyssa’s seizures are pretty mild but each is still a blip in her processing process. The fact that she is accomplishing so much even with all that is going on is truly astounding.
Since Alyssa was so out of it from the mild sedative she slept most of the time I chatted with the neurologist and then the whole way home. She was in good spirits for the rest of the afternoon though. Neil, Cait, Alyssa, and I went outside for a bit. We played with sidewalk chalk on the driveway, but Alyssa wanted none of it. She kept crawling over to the car. Ha!
It was the first time I had ever let her crawl outside and I think she had a blast with it. It’s so hard sometimes to just let go and let her get dirty. Part of me cringes about her clothes getting dirty or the thought of a second bath of the day but the reality is… at the end of the day? I’d rather her be happy! After three years I’ve learned that list little girl is most at home in messy situations! Ha!
Cait, Neil, and a neighborhood little girl had an art contest. Since Alyssa had no desire to color we let her pick the winning picture. 🙂 She crawled right over to Cai’ts “Neil the Chimp” drawing!
Although Neil’s Elwood Elephant deserves an honorable mention for sure…
It was a great day even with a hectic schedule. Now we just need to give her a few days of rest, get her back to tip-top shape, and start her meds! 🙂 It will be a prayerful and positive journey and I know we won’t be walking the path alone!