Monday, March 3, 2014

Year In Review Part 2

This is part of a series covering 2013!  See Part One here

Went on the Embassy Tours.  One of the coolest things I have ever done!
Cole is super sick.  Attended two Derby parties, hooray for hats!  End up in the PICU.
Find out that one of our Dravet friends that we know personally earned her wings.
Did a lot of Zumba with friends. Got a chunk surgically taken out of my scalp.
End up in the PICU, again and then again.  We were basically in the hospital for three weeks in a row with only a few days break in between admits.  Total Major Seizure Count: 54

Went downtown with some great friends.  Started a major obsession with the Library of Congress.  Found out I don't have Lupus, I have Fibromyalgia and Osteoarthritis.  Say good-bye to some of our dear friends when they move.  Why does everyone around here move constantly?!  Seizure control is null and void.  Having up to 16 to 20 TC's a day.
 Get pretty desperate and almost Life Flight Cole to Miami.  Instead, we take a risk, drug him up, pack our bags and drive to Florida.
 Stay inpatient for a week and do a major wean of Phenobarbitol while we are there.
 Total Major Seizure Count: 95

By divine intervention, Brian and Niki get to make it to Hawaii on a trip that has been planned for 6 months with her family.
There is a ratio of 3 adults to 1 Cole while we are gone.  7 Nurses switching off around the clock and help from friends who are salt of the earth.  It was Brian's first trip and Niki's return to "Home" where she used to live while going to school.  We jump off a 45 foot waterfall and try to have a good time even though we are thoroughly burned out.  Niki got a baseline EEG since it had been 8 years.
Slugger goes to 4 Paws for Ability for some refresher training.  We ended up in the PICU, again, while he is gone.  Had a 2 hour status seizure.  We start importing Stiripentol from France since we have tried just about every thing else under the sun.  See the list.  Total Major Seizure Count: 244

We take Cole to Seattle Children's Hospital.
 He has 6 TC's before we leave, 1 at the gate, 10 in the air, 2 at the airport after we deplane and multiple after we left baggage claim.  One of the most stressful days of my life.  He has muscle biopsy surgery to determine he has a Mitochondrial disorder on top of Dravet Syndrome.
 Our summer vacation was flying across the country, having 9 Dr. appointments and 1 surgery in 4 different locations in 5 days.  We even have sleep studies in two different facilities on the same night.
Cole is so drugged from the Stiripentol that he is Zombie-like and he doesn't have a nocturnal seizure, like we had been experiencing every night for almost a year.  It always happens that way :)  My sleep study shows I am sleep deprived.  I paid money for that?!  LOL
 Have a pistachio macaron at Pikes Market that I will remember forever.  Get to see some of our great Dravet friends.  Cole is having 30 to 40 big tc's every day.  Went on a night tour of the monuments.  It was perfect, highly suggest it.  Had an overwhelming display of love from family with "Cole Is My Super Hero" as the theme for our annual reunion.  Total Major Seizure Count: 176


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