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.

Love,

Aaron & Megan

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

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

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.

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,

Aaron

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.

Despite it all...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.

Another Shunt Surgery

Last Thursday afternoon (Feb. 20) the valve of Meara's shunt slid to the front of her forehead.  It's not supposed to do that.  The following day Megan took her to Children's for a scheduled wound check and they performed an x-ray.  It confirmed that the catheter running from the valve to the empty cavity inside her brain had been pulled out.  Meaning the shunt was no longer performing like it should and draining the CSF.  So, they sent her home and said to wait and see what happens.

Then, on the way home from the hospital Meara had a seizure in her car seat.  The first one (that we know of) since November 25.  Megan witnessed it and Meara confirmed it when Megan asked her if she had one.

To say that we were crushed is an understatement.  It felt like being punched in the stomach.  Sunday was really difficult.  The lowest that Megan and I have felt in a really long time.  We were tired and drowning in exhaustion.  I think if you were to ask me on Sunday I'd say that time is a cruel cruel thing.  It can be a best friend or a horrible seething monster that is relentless in inflicting pain and glorified retribution.  All the worrying, all the strained minutes of trying to figure things out.  

It's like an arpeggiated melody that just won't come to a resolution.  It's beautiful at times, but overall you just want it to finally end.  Finally come to a place of rest so a new idea can be born.  We are ready for Meara to be healthy again.  We are ready to have some closure so she can start being a kid again.  So we can focus on doing things and living life with the average complications.

So Friday afternoon at 1:30 Meara will be wheeled back into the OR to have the valve reinforced and the catheter reinserted into her brain.  This will mark her eleventh hospital stay.  The week has slowly progressed to a better place.  Monday we started to catch our breath again and we started to pull up our "big boy pants" to get Meara through this next leg of the journey.  

So, if you ask me (or Megan) how it's going we'd probably reply "Let's revisit that question in a couple months, or a couple years".  For now, it's day to day and minute to minute…just one big dynamic roller coaster of hope that serenity is somewhere on the horizon.

Peace, love, and unbridled determination,

Aaron & Megan

Staying another night, fluid building back up...

Staying another night.  From a neurological standpoint Meara is cleared.  Everything looks good except the fluid has built back up and they just want to make sure it doesn't get any bigger or that it doesn't spring a leak.  In some cases it could take time for the shunt to drain properly so it doesn't necessarily indicated a problem yet.  If the fluid continues to build then I guess we start discussing other scenarios.  For now, it is a wait and see.

Originally, we were supposed to go home this morning after rounds.  Ah. Nothing ever goes according to plan.

I did get her to walk to the bathroom this morning though.  And then I wheeled her downstairs in a wheelchair to visit the cafeteria and we ended up walking all corners of the hospital.  We were probably out of the room for a good two hours.  She wanted to stay out of the room.  That is a good sign I would guess.

While we are still here figuring out next steps with Meara, Ainsley is learning how to be a punk rocker from her friend, Mason.  Although, I'm realizing this might be considered her first date. Oof. Thanks Lisa and Martin for taking her in today!

We also want to thank Lumy and William for taking care of Ainsley all day yesterday.  She had a wonderful time playing with Rose...two peas in a pod they are.  Thanks Lumy for always reminding us that it takes a village.  Life is beautiful indeed.

Peace everyone. 

Much love,

Aaron & Megan

Shunt Surgery and Recovery

Meara's surgery went okay. The surgeon said the shunt was a little fussy, just because of the space, scar tissue, fluid area etc, so it took a little longer than they had planned but they got it in. Meara woke up in a lot of pain in the recovery room. She's been getting some narcotics to help with that. She has a total of six incisions, three on her head, one on her neck, and two on her belly area. She's getting IV antibiotics through tomorrow, and we'll see how she's managing the pain. She was in too much pain to get up and use the bathroom this afternoon. She's gotten more active throughout the evening. We've been playing tic tac toe, drawing, reading her valentines, and eating m&ms.  I'm here with Meara tonight. Megan didn't really sleep last night so hoping she'll get better rest at home. Last dose of IV antibiotic in the morning. Hoping they'll discharge sometime throughout the day.

Megan and I realized on Monday...this makes hospital stay number ten for Meara. In five years. Countless EEGs, MRIs, PET scans, SPECT scan, ketogenic diet, a few ER visits, drains, and four surgeries on her brain and head. So here is to our princess warrior who deserves a freaking break. Can't wait to see her back on her bicycle, going down the slide at the pool, playing at recess with her school friends, and having her birthday party. She's earned a childhood many times over.

And, good luck to any future boyfriend/mate. He better be some kind of amazing. I'll have some pretty high expectations and then some. I was thinking as she was in the recovery room today...that all I want in life is for her to be happy and to be loved. Everything else...well, is everything else.

Much love to everyone. Thank you for sharing in Meara's brave journey...

All our love,
Aaron & Megan

Shunt Surgery Friday Morning

Meara's been on the subdural drain since Monday evening.  She had to have an IV put in Tuesday evening to put her on saline drip because she wasn't peeing enough and hadn't eaten much either.  They just wanted to make sure that her sodium levels didn't drop enough for her to have arrhythmia.

She's been doing fine.  I stayed at the hospital last night to give Megan a chance at sleeping at home and to get some time with Ainsley.  Meara's been throwing up a bit this morning but it's probably due to the pressure change in her head. 

The neurosurgeon said this morning that we are going to go ahead with surgery tomorrow.  Cultures have come back negative for infection.  That's good news.  The surgery is scheduled for 7:30 tomorrow morning (Friday).  She will be wheeled down around 6:00am.  

Megan and I will both be here for the surgery.  It will take about two hours from start to finish.  I believe that approximately forty-five minutes of the time is the part actually installing the shunt.  We are hoping that with a strong recovery Friday and Saturday that we can be discharged sometime Saturday.  Wishing for fulfillment on this outcome.

Thanks everyone for the positive messages of support and encouragement.  It gives us strength and Meara feels loved beyond limit.

What would I do without Eddie Vedder.  Love this line from his song Guaranteed: 

"Got a mind full of questions and a teacher in my soul…And so it goes."

There it is. 

Love to All,

Aaron & Megan

Admitted to Hospital

Meara was admitted to children's hospital this afternoon. She might have had some leakage from her head and so they wanted to put in a subdural drain (this will be her third one) to drain the CSF and collect it for a culture. If by Thursday there is no evidence of infection they will go ahead and perform the shunt surgery on Friday. If there is a infection they cannot put the shunt in, instead they would perform a surgery to install a more permanent drain into her brain and put her on IV antibiotics. They didn't give a timeline for that scenario. We're obviously rooting for the shunt surgery on Friday.

Megan is in the hospital with Meara all week. I'm at work and home. I'm running really low on days off so trying to conserve. Ainsley isn't allowed to be at the hospital because of flu season restrictions (no visitors under age 13) so finding childcare during the day and then me and Ainsley in the evenings. Thanks to James, Bethany, Beth, and Chris for covering our Tuesday and Wednesday. Can't tell you how much this means.

Sorry so short. Going to be in the thick of it so not sure about timely updates but will update as we know anything important.

Love to all,

Aaron & Megan

Change of Plans

Meara started developing symptoms of a cold yesterday afternoon and when she woke up this morning the symptoms were worse.  As a result the surgery has been postponed until she is free of the cold.  

The pressure in her head is intense at the moment and she's in a good deal of pain.  We asked if they would drain the fluid temporarily (with syringes) like we did once before but understandably the neuro staff doesn't want to risk infection, especially with her cold.

The plan is to wait it out.  If she's in enough pain to be throwing up like she did in November then we'll have to admit her to the ER at Children's and determine a new plan.  Otherwise we wait  and check back with the surgery scheduler on Monday to see if it's possible to schedule the next earliest surgery date.

Thanks everyone for the encouragement and positive vibes being sent our way.  Meara is in pain but she's also safe and Megan and I have our wits about us.  Everything is okay and it will work out soon.  Meara just has to hang in there a little longer.  She'll get through this like she always has.

Thank you so much for your love and strength.  We are doing well because of it.  More updates as we know more.

All our love,

Aaron & Megan

Embracing it All

The fluid in Meara's head has gotten bigger and therefore tighter.  Megan took Meara down to Childrens this afternoon for a fast MRI and consult with neurosurgery.  The surgeon decided she needs a shunt due to the fluid building back up and the fact that it still hasn't dissipated since her November surgery. Meara will be admitted to the hospital on Friday at 10:00am and the surgery will be at 1:00pm.  The surgery will last two hours and she'll be in the hospital for twenty-four hours so she can receive her four doses of required IV antibiotics.  She will have the shunt for the rest of her life.  The valve is installed between her scalp and the bone flap.  The catheter will be inserted through the bone flap and dropped down through Meara's brain, down (inside) the neck and end at her peritoneal cavity.  The catheter will extend as Meara grows, meaning there is enough catheter rolled up to adapt to her changing body.

And some thoughts that I captured last night...after putting the girls to bed...

Meara is full of beauty.  She sits with a heart full of imagination and innocence.  When she curls up to you and you feel the wonder…the curiosity and light that she brings.  It is as if we inherit something unique and special by enveloping her soul.  It provides shelter…and warmth.

It also ironically hurts.  Thinking about what she has been through.  Thinking about the challenges she has had to face.  Thinking of the brain surgeries and the times we've had to leave her in the operating room on the surgical bed kissing her right after she's been put to sleep.  Knowing that as we sit in the waiting room that we've just made such a insanely difficult decision to put her there…

And there it is…the incredible forest that is expected to be navigated.  Because we have to find our way out.  She still has her entire life ahead of her  She's so beautiful.  And so far, her life has been filled with so much vulnerability and depth…such complexity.

At some point I bet I should actually talk with someone who can help me sort all of these feelings and hopefully move a few steps forward.  Time…where is the time.

Making these difficult decisions hasn't made us stronger.  It's empty to think so and you cannot offer us evidence to convince me of it.  It has made us more aware…perhaps more conscious and present.  It has made us see the life that still awaits us moment to moment knee deep in…intense meaning.  And it doesn't make us stronger…just more aware.

It's alright…but it also intensifies the love so much that it hurts.  That when you hold your daughter's hand as she falls asleep you can't help but think of her journey through hope.  It's so intense and it really just makes you want to embrace her and never let go.  Ever.

All our love,

Aaron & Megan

  

Moving Along...

Hi All,

Meara had a PET scan on Tuesday morning.  She had an IV put in while awake and then was given the radioactive tracer.  The test took about 45 minutes and after she woke up from the anaesthesia we went to the cafeteria to eat some french fries and chocolate milk.

Megan and Ainsley arrived at the hospital in the afternoon and we met with Meara's neurosurgeon. He looked at the images from the petscan and said that since her fluid is squishy and she isn't in pain that he wants to wait on the shunt.  Right now she fluctuates between normal and 101 but Infectious Diseases doesn't seem concerned about it at this point.  She's acting normal around the clock and it doesn't seem to be affecting her activity level or comfort. 

So we meet with the neurosurgeon in three months and wait and see in the mean time.  Meara is cleared for P.E. and recess at school (the incision on her head healed up really nice).

We are just plugging along...we have a overnight hospital stay in March for a 24 hr EEG to find out if Meara is having seizures.  Wish for the best.

Love to all...

Aaron & Megan   

Meara's Brave Journey...and the ramblings of her Dad

I've reached a point in my "reflecting" where I've realized the blurry line I've created within Meara's Brave Journey, the blog.

There have been quite a few entries that have little to do with Meara's treatment (if any at all) and are more of just the rumblings that I've been motivated to unleash upon the electronic frontier.

So, I think it might be appropriate for me to have a alternative space to capture my more spiritual, reflective, moments of angst and redemption type of stuff so that way Meara's Brave Journey is just that - Meara's actual brave journey.

Here is a link to a blog that I'll update from time to time with random thinking.  It will most likely just be between me and myself, and that it perfectly okay and appropriate.  I'll think of it as a conversation with my inner self…if anything other than to release my deepest thoughts into electronic superspace so I can then move on about the daily routine.  Or, perhaps I can connect with some of you out there and engage in some dialogue related to keeping serenity and hope at the forefront of our existence.

http://existingandbeauty.blogspot.com

Meara has a petscan tomorrow morning and then we meet with the surgeon at 1:00.  We are hoping he'll have a plan regarding the fluid in Meara's head.  Shunt or otherwise.  She is thriving at home and at school and is surrounded by love.  I'll update Meara's Brave Journey tomorrow evening when we know more…

Our love and heaping mounds of peace,

Aaron

Time and the thick of it all...

I'm not so sure that time helps with loss.  

It could be that there are just periods of abandonment of the total revelation of the loss.  Like an ebb and flow type of thing.  As if traveling a river thinking "okay, this isn't so bad" and from time to time you come upon a waterfall and you think to yourself…crap.  

I believe this is how the grieving process goes.  But then I'm not so sure it is a process.  Maybe just a prickly road that you have to travel barefoot.  Trying not to step on anything that will hurt too much.  But it's impossible to avoid the really painful stuff all of the time.

I have no coping mechanisms really. I mean, you could say I drown myself in distraction…and that would be true.  

As I put Meara and Ainsley to bed tonight they insisted on sleeping together in the same bunk for the second night in a row.  They also insist that I stay with them until they fall asleep.  

My brother came to live with us when I was eight years old.  When we moved to Bradenton Ben was old enough for us to have bunk beds in the same room.  And I remember after Mom and Dad would turn off the lights he would come crawling into my bed.  And if he didn't…I'd call out and ask if he wanted to snuggle.  We were "best buds".

I hope Meara and Ainsley feel the same way about each other.  And I hope that Meara and Ainsley have each other to hold onto long after I'm here.  

Mad World

Tears for Fears…as I'm picking up toys after the girls fall asleep.  I'm on the floor picking up tinker toys and trying to figure out how we accumulated so many of these toys when "Mad World" lands on the playlist…boom.  Time for deep reflection…

"Bright and early for the daily races, going nowhere…"

I think how lucky I am that I get to wake up and be part of a vocation that I need more than it needs me.  No daily race…just striving to be present and have meaningful interactions and moments with my own family and my students.

"Find it kind of funny, I find it kind of sad, that the dreams in which I'm dying are the best I've ever had…"

Is it possible that these difficult journeys we've been on actually add meaningful to our lives that elevate us to a higher sense of purpose and understanding…learning to listen to others…their suffering, their calls for community, connection, and embrace.  Maybe that is why dreams of dying leave such a impression…it helps us realize just how important life is.  

"Children waiting for the day they feel good…"

Children want connection.  They want to be heard.  They want to be able to express their challenges  with reconciling a world filled with so much violence, exclusion, and greed.  They want a better world.  They want to feel good…

"People run in circles, it's a very mad world…"

All the time…the look of resignation on people's faces.  What are you after?  Are you contributing to good in the world…or are you just taking?  If you are running in circles…chances are it's time to start focusing on the giving…the contributing…something other than…"How much can I get out of this?"  Chances are you might stop running in circles…

Just a bunch of random thoughts on…I'm sure Tears for Fears' random thoughts…

Sorry.  This has nothing to do with Meara's treatment.  Petscan on January 21st.  Probably find out whether or not she'll get a shunt after that.  She's doing great.  Back at school and loving it.  

All our love,

Aaron