Holy Cow! Mama’s been slacking on the blog posts! I am so sorry about that-this month has been pretty crazy!
Let’s get the bad out of the way first-both girls have been having a really really rough time with myoclonus. If you’ve seen the few videos I have posted on social media, it is pretty much all afternoon for both of them. We have been very limited in what activities we are able to do with them because of how bad their myos are. Anything outdoor has been so hard on both of them. The good part of this- we had a neurology appointment Feb 16 and Denver will be starting Fintepla (this is the med I believe has helped Nova the most), as soon as we complete the mandatory heart echo. At this appointment we also increased Nova’s Topiramate.
On the 5th we had a neurosurgery consult for Nova’s VNS. The surgeon was absolutely amazing- he had done 500+ VNS surgeries, was very detail oriented and made us (and Nova!) feel very comfortable. He was very compassionate and offered to get us in the following week, but due to some scheduling issues, we ended up doing the surgery yesterday the 23. It was an amazing experience. Nemours does such a great job making patients and parents comfortable- Nova got to decorate her anesthesia mask, a chaplain prayed with her, and everyone was so kind. After she went back, we were texted updates during the whole procedure, and we were able to be there when she woke up. She really was enjoying the nap (I say this with light humor, really, she was scaring the sh*t out of us with refusing to wake up). We turned on Ms. Rachel, and it got her to open her eyes for a split second, we switched to Little Lights (a Christian learning show), and she was awake doing the dance to the theme song. Once we are passed the healing part, I plan to do a sit-down video on every step of this process. We are so hopeful VNS will help her- if you want info on statistics and such our linktree-https://linktr.ee/Addiepilepsymama?utm_source=linktree_profile_share<sid=f7b09b86-9faf-493d-a48a-249cbeaa96dd has an article about it.
Developmentally, both girls are working so hard. Denver still isn’t walking, BUT she did take a few steps this month. Nova is working very hard on putting words together. Both girls have been loving to sing songs and dance.
We launched our Warrior Wear this month (linked on the homepage)! We have also been contacted about many exciting opportunities coming up. It has been very exciting to think we are making a small impact in our Dravet community. If you don’t already follow our social medias, they are all linked in that linktree provided above,
Coming up in March, we have echos for both girls and Nova’s GI appointment. I will be keeping everyone updated. Thank you for following us on this journey.
All the love,
Addi Epilepsymama
