I've had a good amount of friends ask what our next steps are with Meara's treatment. We've signed Meara up for Realm of Caring in Colorado Springs which is the non-profit that grows and dispenses the Charlotte's Web strain of CBD. It's actually classified as hemp because the THC content is less than 3%. There is literally no way that Meara could get high from this oil. In 85% of the people who take it there is improvement in seizure control. We have a long road to actually get her qualified. Meara will require a "red card" which is a Colorado medical marijuana card. We have to get two doctors to sign off on it. Since her neurologist at Children's and her pediatrician at Kaiser will not sign off we'll have to find new doctors outside Meara's current health care who are open and supportive of such a treatment. Then, we wait for Realm of Caring to have enough supply to add Meara as a patient. As it is right now there are about 4,000 people in Colorado ahead of Meara on the waiting list.
I don't think that Megan and I have to justify such a bold move. And I don't feel that any one of you have expressed (or implied) otherwise. In fact, we've experienced nothing but positive support and affirmation as we have decided to head down this road.
I will say this though: we've given traditional/conventional medicine it's turn and then some. It's been 6 years on this journey that we've exhausted all possible anti-seizure pharmaceutical drugs, spent 10 months on the ketogenic diet, and have tried 2 brain resection surgeries. I think it's okay for us to try a plant. When it becomes available, which might take a long time, we'll give it a go and see what happens.
Good news, we were able to schedule Meara's 2-3 night EEG hospital stay for June 23-25ish. That means it'll count towards the current year's health insurance deductible which we've already met. That is huge for us.
Meara is doing great. She missed at least 35 days of school from surgeries/hospital stays alone and according to the team of teachers that she receives support from she is right on target for reading and writing. She did not qualify for a learning disability but they were able to qualify her for continued support under "other health issues". She has trouble with auditory processing, probably because of the area of her brain that was affected by the seizures/and then resected. Basically, she gets the content, she just has trouble keeping it stored long enough to transfer the content/directions to a task. So she can do the things her teachers ask her to do, just with more visual reinforcement and breaking down the directions into smaller steps.
I injected a quick discussion around adversity while teaching my 5th and 4th graders this week. Maybe my last ditch attempt to have some positive influence on them before they move on.
Adversity is a training ground really. Or perhaps a battlefield. Or maybe a crazy house filled with mirrors. Here's what I know about adversity though: you can't avoid it. No one can. Doesn't matter how difficult or convenient/easy your life is. Everyone has it in some form and some degree. And if you don't think you do, just wait. You'll have it at some point. The idea is not to avoid it or run from it. The more you live within it, the more you learn about life. As you navigate through the adversity the better you get at being able to find the joy in life.
It's tiring as hell of course. But I've learned that anything worth anything in this world requires work. Whether it's with hands, mind, or heart.
Love to all,
Aaron & Megan