Saturday, May 17, 2014

Next Steps

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

Thursday, May 1, 2014

Fast MRI

Megan took Meara (along with the girls) down to Children's today for a fast MRI so neurosurgery could get a new baseline post-surgery.  Everything is looking good.  The neurosurgeon said after reviewing the images that her ventricle is small meaning that it was the right decision to install the shunt.  The shunt has been working and is keeping the CSF from building up.  Thank you to Chris Short for meeting Megan at the hospital to help keep an eye on the kids.  You are an angel.  I should also mention that I have the strongest wife on the planet.  Can't believe MacKenna is six days old and she lugged three kids down to the hospital today without me.  She's downright amazing and a heroic mother to our children.

In case we haven't shared we should let everyone know that Meara's seizures are back.  She's been having them at night and while napping.  We believe they aren't as intense as they were before, meaning that she doesn't stop breathing like she did pre-surgery and they aren't as long.  The neurologist wants to do a 2-3 day EEG hospital stay to get more information.  We will try to get it scheduled before our insurance calendar year is up (June 30).  If you are the praying type, pray that we get this stay in before that date.  It's the difference of having to meet the next year's out of pocket maximum amount or it being covered entirely because we've met our out of pocket for this year already.

One thing is for sure, we will not be pursuing a third resective surgery.  Meara's current quality of life is high and we will continue to support Meara by making medical decisions that preserve this.  We don't regret the decisions we've made because we believe that we weighed the risks and benefits and we've done our best.

I have a coworker who turned me on to a daily email blog a few years ago called Tiny Buddha.  It touts simple wisdom for complex lives.  The blog today was titled "How to Stop Feeling Inadequate and Embrace Your Imperfect Self."

The author points out her realization that "the stacks of certificates and awards collecting dust inside a drawer in my perfectly clean house weren't doing much for me…they were only temporary fixes to fill the voids of my spirit as I desperately avoided being completely honest with myself and opening up to my truth and vulnerability." 

I think of this every single day as I pursue excellence in teaching, as we send Meara off to school.  I think of my students who are growing up in a society that places so much importance on specific content and job skills that are deemed essential and mandatory for the success of our capitalistic, profit driven economy.  I think of the emptiness that they must feel as they reconcile who they want to be versus what they have to do in life.

So we have established that nobody is perfect, right?  Seriously, nobody is perfect!  So if we can let go of this self-inflicted pain due to our insane need to find approval from our achievements and what the world thinks we should be and just…well, just love each other.  Just live our lives so that we recognize and value relationships more than money, fame, success, accolades.  If we can just recognize that joy is found in our own soul.  The author, Dawn Gluskin, today in her blog writes "…if you are not living your own truth and doing things that are in alignment with your own soul's calling, then you will always be left feeling unfulfilled and always grasping for that outside validation."

Here is a proposal.  Let's raise Meara, Ainsley, MacKenna, and all of our precious children that we love and adore and just want the best for…let's raise them in a society that values this acknowledgement of the soul's truth.  Let's give our children, our future generation and caretakers of this earth, the green light to follow their heart and find validation within themselves instead of these neurotic and insane principles that have nothing to do with a more compassionate and loving society, only a society hell bent on improving the GDP.

Time to stand up.  Time to take back our community, our cities, or states, our nation, our world.  Time to tell whoever is in charge that the right decisions aren't made for money.  The right decisions are made in order to help people and provide unrestricted opportunities where kids can grow up with the freedom to make a difference in the world.  A difference that will inject joy and happiness.  Because guess what?  Money might provide convenience…its sure as heck doesn't buy happiness.