Another five weeks has passed, and it has been another month that makes us feel extremely confident in our decision to make the move to Colorado for this treatment for Maddie. Since our last update, we have changed up meds and dosing a bit and we are still seeing similar seizure improvement to what I reported in our last update. The reason we are so pleased is that since starting Charlotte’s Web, we have weaned her Clobazam, an extremely strong and addictive seizure medication, by 20%. There were some upticks in seizure activity with each drop, but after a break from the wean, she is back to a fairly consistent daily seizure count which is at least 50% better than when we got here. We had tried and failed at weaning Clobazam for the last two and a half years, each time with seizures becoming very dangerous after just a tiny drop. So this is progress I am extremely pleased with. We hope to wean this pharmaceutical completely, but that will take us awhile. We are trying not to make her tolerate med changes constantly, so it will be slow.
Her development is continuing too. She is so much more alert and is just comprehending more. It is amazing to see. It has been extremely slow and frustrating trying to set up all of her services/therapies here in CO. But this week, she will officially begin both ABA therapy and school (still homebound). I am confident once she is back in a routine of therapy and school that we will begin to see even more amazing progress.
I am still working HARD on trying to get this amazing medicine legalized in NC so that all of the kids in NC have access to it without having to uproot their whole families to give it a shot. If you haven’t seen, we’ve been on the news quite a bit. Here are the big clips:
Media attention helps, but we still need the legislators to really begin to listen and take action. I think exciting developments are coming, and I will definitely share them with you here when it is certain. I’ll be asking y’all to write letters asking for your local legislators to support us and our bill when that time comes. I am very hopeful that this issue will be addressed in the upcoming legislative short session in NC.
In other news, Brandon was out for a visit last weekend and we actually got to have a ski vacation. It was a bit different than in the old days when we used to come to Colorado and ski, but he got in a full day of snowboarding at Vail and I skied for the first time in 15 years at Beaver Creek. It was so much fun. We hope to do it again soon, and this time we’ll have a Maddie-sitter (my mom) along so that we can actually spend the day on the mountain together. We are super thankful to my aunt Linda and uncle Mac for opening up their home to us and for a fun visit with them and their boys. As much as I’d like to legally be able to go home, this state is magical and I see why so many people love calling it home.