Thursday, May 30, 2013


After three days we were able to capture a seizure with the radioactive dye used for the spect scan.  On Tuesday she had the spect scan that gave the doctors a baseline and today (the last day the dye was available) they were able to identify a seizure and injected her with the dye.  She was wheeled up later for the scan and then we were discharged this afternoon. 

Kudos to Megan and the EEG techs for watching her while she was sleeping so that they could inject her within 30 seconds of the onset of seizure.  If any later than it would have been a lost cause.  Basically, as we understand it, the dye travels directly to the location of the onset of seizures and gives the doctors an address to consider for possible surgery.

The doctors meet on Tuesday to conference and argue Meara's case.  On Wednesday we have an appointment with Meara's neurologist and we find out what they recommend.  Then, Megan and I spend a great deal of time reflecting, praying, meditating, thinking, listening, and being open.  We have decided that we aren't on a timeline.  Things will happen at the right time for the right reasons and we've concluded that it is entirely out of our control.  

Megan was in the hospital full-time with Meara keeping her sleep deprived so that she would sleep during the day (when the dye was available).  She is a super Mom with super powers.  If you ever feel motivated - tell her that.  Tell her how awesome she is and what a great Mom she is.  She needs to hear it from someone other than me. 

Props to the EEG techs too for sitting by Meara's beside for hours staring at her waiting for the opportunity (identifiable seizure) to inject the dye.  Amazing these people who work in these professions.  They really have to love kids to do this kind of work.  We are so lucky to have Children's Hospital.

Ainsley and I came back to the house at night (she's too old to stay at the hospital over night).  A huge amount of gratitude for Bethany Brittenham who watched Ainsley (in addition to her own three kids!) all day today while I was with Megan and Meara for the spect scan.

The difference between this visit and last August was that you couldn't get Meara to stop talking.  She was extremely verbal with the hospital staff and honestly, i think she loves the attention she gets while we are there.

Thanks to Joe (who delivers the food trays from food service).  This man has a heart of gold.  Over the years I've gotten to know him pretty well and every time I see him he gives me the biggest hug.  He hugs me tight and reassures me that Meara is going to be okay and that things will be figured out.  He always makes a point to come by and see Meara and give her the same treatment.  He provides more than a warm meal. He offers unconditional love and hope.  I hope he knows how important he is.

You know, life is a real pain in the … sometimes.  But it's worth it.  It's worth the fight.  It's worth the journey.  Feeling the tight embrace of your kids is worth more than anything in the world.  Knowing that your mate will be there by your side through thick and thin (I know this because she's been here with me through a lot of stuff - a lot of stuff) is also worth more than anything in the world.  These are things that could possibly be taken for granted.  It's not.  I recognize it and I'm so grateful and happy to have this life.

Be good to each other.  Don't be afraid to live and experiment being happy without the condition of things acquired or attained.  Just recognize that in this very moment you have exactly what you need to be happy.  This is my new mantra.  Can't promise I won't have a crappy day.  But man does it feel better knowing it and making it something to work towards.

Love to all.  Thank you from the bottom of our hearts for loving us and for the positive words of encouragement and affirmation.

Aaron & Megan

Tuesday, May 28, 2013

Hospital Stay

Last time I wrote (concerning medical treatment) we had a January stay to follow up on Meara's seizure return. They determined from the EEG that the seizures are coming from the insula area. 

Today we checked in for a five day stay to have spect scans and EEG. The spect scans will include an injection of radioactive dye at the onset of a seizure and then she will be wheeled down for the scan. These scans will determine a "address" within the insula.

Then, once the the doctors have conferenced and determined whether she is a surgery candidate once again, Megan and I take a long hard look (along with a massive amount prayer and reflection) to determine if we feel it is in Meara's best interest to go in and remove more (and incur more deficits) or if we should let her continue to live with the seizures. 

No decisions to be made this week. Just information gathering. She's a trooper. She's excited to be in the hospital and be pampered. 

Love to all! Courage and peace in abundance...

Aaron & Megan