Saturday, July 26, 2014

Shunt Revision Surgery

This week the CSF built up in Meara's head and wasn't draining like it should.  Finally, after she threw up Thursday we called Childrens and took her in on Friday for a MRI and consult.  The MRI showed that her ventricle was enlarged, meaning that the shunt has stopped working.  Her neurosurgeon is back in town on Monday, so we have a shunt revision surgery scheduled for 8:00am Monday morning with an overnight hospital stay to monitor the head wound and to get the required three doses of IV antibiotics.  Hopefully they will only have to open her up near the actual valve but they will test the entire shunt that runs through her body to figure out where the malfunction is.  The surgeon will be able to identify the problem area once he is in.

Meara has had this revision before, two weeks after the original shunt surgery.  She knows what is happening and the only thing she dislikes about it is the IV.  Otherwise she is in great spirits and doing just fine.  If the fluid continues to build over the weekend and she throws up again then we head down to the hospital right away and the on call surgeon will perform the surgery.

I want to extend a special request for a family that we are blessed to know by being on this journey. Ashlyn is nineteen and will be having grids placed on Monday by the same surgeon that Meara has.  She and her parents will be gathering information from the grids and making a decision about possible resection in order to gain control of Ashlyn's seizures.  Please pray and send love to this wonderful family.  The surgeon will be operating on Meara first, and then operating on Ashlyn next.  This family is incredibly brave and we surround them with love and strength.

Hug your kids today, hug your spouse, hug a neighbor.  You never know what kind of stuff life will throw at you at any given moment.  So live in the moment and be grateful for what you receive.  We love all of you and wish you peace.

Aaron & Megan

Wednesday, July 16, 2014

Update following EEG and Neurology Visit

Meara had a EEG stay at the end of June.  Were were there for three days and during the stay she had one seizure.  The rest of the movement in her sleep they identified as arousals.  So, that is good news.  She might not be having as many as we think based on this snapshot.  

So, the current seizures are coming from her motor strip, or right behind it.  This means that a "third player" showed up.  The first surgery took care of the first player, the second surgery took care of the second player by isolating the activity in the frontal lobe.  The latest EEG did show some spikes/seizure activity in the frontal lobe that they disconnected in the second surgery.  Basically with the second surgery it has prevented the second team from affecting the rest of the brain.  Think of it as putting the "bad guys" on an island by themselves.  

In terms of a surgery perspective the next course of action would be to do a hemispherectomy and she would lose all motor function on her left side regaining some of it with intense physical therapy.  We've already decided a firm no to that route.  What it means though is that her current seizures could be affecting her motor control anyway.  Now, Megan and I haven't seen any noticeable loss yet.  Given the fact that she's had seizures since was two weeks old perhaps it is not out of the realm of possibility that her brain has moved her motor function somewhere else in order to avoid interruption or damage from the seizures.  Well, at least that is my own positive lean.  The other positive lean is that at least they are not affecting the cognitive part of her brain.  The meds affect her cognitive development but at least the seizures aren't. 

We had an appointment with Meara's neurologist this afternoon at Childrens and we informed her that we are pursuing the Charlotte's Web strain of CBD.  To our awesome surprise the neurologist shared with us that the hospital is in the process of securing a clinical study of a synthetic version of CBD.  She'll present to her boss next week.  They will have to choose between two different competing manufacturers of the drug and then hopefully begin trial within a few months.  We told her that we would like to be considered for the trial if Meara qualified.  This could be huge if it works.  If it does work it means that since it is a synthetic version and FDA study approved that we could travel with the drug and it would be included in our insurance formulary later down the road.  In other words, it would be legal across state lines and also managed by the doctors that we've been seeing for the last six years.  We are still on the waiting list with Realm of Caring but since we are at the mercy of how many crops they can grow/harvest it might take a very long time until they can take Meara on as a patient.  And it is important for Megan and I to keep in mind…that it might not provide control for the seizures.  But at least it is another route to pursue with a heck of a lot less risk and definitive deficit loss than another surgery.

Meanwhile, Meara is doing well.  She is highly active and looking forward to first grade next year.  She loves her sisters and continues to beat the odds.  Resilience baby.  Resilience.  

Love to all,
Aaron & Megan

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.

Saturday, April 5, 2014

Update on Meara...

Meara's shunt is working. Most of the time there is no fluid in her scalp.

She is having seizures at night. When we had the EEG at the hospital she went the entire night without any but we've seen them at home. It's undeniable.

We haven't decided any next steps. Whatever the next step might be we won't consider a third resective surgery - if they would even suggest it. Most likely they'd want to perform a hemispherectomy but we don't feel that her quality of life warrants that decision or trajectory. We know a good deal of families who have made that decision based on their child's situation and seizure activity. It's not easy and we have the utmost respect for what they have followed through on to give their children the best chance to thrive.

If we pursue a next step it will most likely be CBD. It's off the insurance track and off the grid of her doctors at Children's Hospital. But we've exhausted all other methods - conventional drugs, diets, and brain resection surgeries.

Speaking of insurance. My school district (employer) informed me on Friday via email that our premium will be going up. Now we are almost $1,000/mo for the premium. Our out of pocket maximum also increased from $5,000/year to $9,000/year.

So with the premium increase coupled with the out of pocket increase we've entered a new level of "holy crap" when it comes to Meara's care. Although healthy families hope only to reconcile the insane monthly premium we also have to reconcile that Meara requires hospital visits, MRIs, EEGs, petscans, etc. at a minimum each year to monitor her epilepsy and to help decide the best approach for her care. In simpler terms, when they give us an out of pocket maximum for the year we know we'll hit it.

We hear the argument: "but you are a high end user so you should bear more costs." Or, "live a healthy life and you'll go to the doctor less." The problem with that argument is that 1) Meara was born with cortical dysplasia (a malformation of the brain) due to nothing that we did as parents during pregnancy. It is a rare thing that happens that we didn't cause ourselves nor is it genetic. Plain and simple, nothing could have prevented it. It just happens. 2) There is no amount of "healthy" living that will take these seizures away.

I'm a school teacher. $12,000 in insurance premium and $9,000 in additional health care costs (not including the copays for specialists and prescriptions) per year is a debilitating thing.  I guess what I'm trying to say is: what the hell is happening to our country when it comes to medical costs and so called insurance "benefits".  I can't even begin to wrap my head around it. All I know is that Meara's condition was not preventable and families shouldn't be destined to financial havoc for the rest of their lives based on the fact that their child needs comprehensive medical care for what could be their entire life. Could it be possible that we can do better as a nation?

So ending with good news. Meara rode her bike last weekend for the first time since her November 13 frontal lobectomy. She also swam at the pool twice this week and went down the slide. Shunt is draining. We have a good deal to be grateful for.

One day at a time. And I leave you with some Mumford and Sons:

"In these bodies we will live, in these bodies we will die
And where you invest your love, you invest your life..."

Megan bought an orchid for my parents in remembrance of Ben. We brought it to the funeral. It was blue and orange. Go Gators. My Dad showed it to me on Skype last night. He keeps it hanging from the tree in the front yard of their house. It has so many flowers that have bloomed. It's beautiful. His soul is alive and he's with us every day. Thank you Ben for teaching us that in these bodies we live and die, and where we invest our love we invest our life. Such a teacher you are to so many little brother. I miss you so much.

Peace to all,

Thursday, March 20, 2014

Neurosurgery Visit and Update...

Megan took Meara for a checkup today with neurosurgery.  Things are looking on the up.  We've been wrapping her head with the ace bandage but less each day.  Now we are only going to keep it wrapped at night and let her be free of it during the day.  The fluid pretty much is draining.  Every now and then it'll build up a little down by her ear and cheek but then it will disappear…hopefully meaning that the shunt is doing it's job.  Booyah.

So, she is looking like regular Meara, acting like regular Meara, and we are living each day with optimism that this is going to be the next step toward reclaiming her childhood.  Not that she hasn't been able to be a kid throughout all of this…just hoping that she (and we) can do so without the constant trips/visits to the hospital.

I was listening to Arvo Part's "Cantus in Memoriam Benjamin Britten" for string orchestra and bell this evening.  Sat at the dinner table while listening and writing out a to do list for the morning…literally wept onto the paper.  And the to do list turned into this:

The bell tolls…and the ice melts, disappearing into the green grass.  An awakening, a rebirth…a capsule that dissolves into trajectories of new beginnings.  We are blessed.  We are strong.  We are weak yet determined.  We are…human.  Meara has given us a gift that we will be unwrapping for the rest of our lives…and we are grateful.

Saturday, March 15, 2014

Despite it's alright.

Since Meara's shunt revision the fluid did not go away, meaning the valve wasn't working.  In fact, the fluid built up significantly.  A week and a half ago, they did an x-ray and determined that there was air in the valve.  The surgeon manipulated the valve with his hands (on top of the scalp) and then sent her back for an x-ray.  The x-ray showed that the air had most likely gone away.  He sent her home to see what would happen.  What happened was nothing.  The fluid stayed.  

So, this past Thursday she went back in for a MRI and x-ray.  On Friday Meara was given anesthesia and the surgeon drained the fluid with a syringe with the idea that this would "reset" the shunt.  Basically, to equalize the pressure (in layman's terms). The surgeon concluded on Friday during the procedure and from the Thursday tests that the shunt/valve/catheters are in working order.

Meara is home and her head is wrapped tight in ace bandage and we just wait again…to see if this will finally work.

How can we begin again?  How can we just live in this constant yo-yo...called life? 

We met with Meara's kindergarten teacher on Tuesday for her parent teacher conference and IEP meeting.  Her speech teacher was also with us.  Both are an amazing gift to Meara and our family.  They exude love and embrace.  They treat working with children as a privilege and a great responsibility.  They also embody warmth and compassion.  These teachers are an inspiration and make me want to be a better teacher myself.

It always gives my heart a great deal of fuel for thought.  It catapults my mind towards reconciling why this world of ours is always searching for perfection.  I mean, the world is addicted to perfection.  Excellence, achievement, "rise to the top".

For what?  To be alone?  To suffer in loss of opportunity for friendship, community, experiences in life that aren't able to (or even shouldn't be) quantified?  What about the learning and personal growth that unravels when we decide how we respond to and embrace weakness…and failure?  You know, Meara's teachers don't want Meara to be "perfect" in the sense of academic achievement.  They want her to learn, and to love learning but you see, she was born her perfect self.  Is she "perfect" at anything?  Goodness no!  I'm not either!  But she's the perfect self that she was meant to be.  And one day I, along with Meara, will learn to love and appreciate ourselves as being the perfect "imperfect" individual that we are meant to be.  That means accepting, and forgiving ourselves.  

I am grateful for the women in my life.  The one I married taught me that acceptance begins with intimacy and vulnerability.  The other two that revel in childhood mirthfulness are still teaching me to forgive myself on a daily basis.  Every night before I go to sleep my adult, society trained mind starts the conversation about the failures I had as a Dad that day…but then, my heart turns towards these two beautiful, sleeping girls, and it says…just be there for them.  Just love them unconditionally without restraint for the rest of their lives.  And you know what?  I can do that.  And I'll do that perfectly.