Sunday, March 2, 2014

Year In Review-Part 1

I decided to just do a little catch up post and it turned into a series :)  That can happen when you don't write for months at a time.  Here's a little about what we have been up to.

For a little bit of history right before 2013, look here

JANUARY
We start off the year in Utah.  After a series of Rocephin shots and a major miracle, we get to go home for Christmas.  Cole enjoyed sledding in Great Grandma's yard in between seizures.
Had our traditional fondue party.  Got to have lunch with some of my Tiger Moms.  We went bowling for Cole's birthday at least 3 separate times.
Had Snowquester.  Frontal Lobe Nocturnal Seizures are in full force.  None of us are sleeping.   Found out Cole was accepted for Make A Wish with Rush Status.  Total Major Seizure Count (this is mainly tonic clonic, drop in O2, convulsion, not nocturnal): 22

FEBRUARY
Started the second Gourmet Club season.  We start a long journey with Cole's bowels and end up in the hospital, twice for backed up stool.
Found our awesome Gastro, who in this small world went to med school with my cousin and used to live down the street from us in Utah.  Who would have thought?!  Had a Favorite Things Party, I can't help it-I love excuses to party!  Had a major friendship break up.  I don't think we talk enough about how this can impact us.  I liked this point of view.  Total Major Seizure Count: 23

MARCH
Took Cole to see the Sea World exhibit in DC in anticipation for Make A Wish.  Started a fitness competition with friends.  I start going bald.
Feeling very unwell.  Initial diagnosis is Lupus.   Went to Miami Childrens.  More tweaking of the meds.  Always tweaking.  Purple Day, we love it!  Had some of our wonderful friends come and stay with us for Easter.  Total Major Seizure Count: 33


APRIL
Went downtown to see the cherry blossoms for real.
First time we had just barely moved, Cole was in the hospital downtown and I was literally throwing up in the car as we headed home after discharge.  They were pretty through the window!  Second time, we had crazy weather and the bloom only lasted for 3 days, so by the time I made arrangements to get down there it was over.  My diagnosis has been changed to possible cancer.  Then back to Lupus.  Had a milkshake that changed my life.  Make A Wish.
 This deserves multiple posts.  It was such a bittersweet experience that we will remember for the rest of eternity.  Not sure when the documenting will actually happen.  The scrapbook that Crops Of Luv made for us is something that I will treasure forever.  I turned a year older.  Total Major Seizure Count: 31 (breaks record for most in one day with 6).

Stay tuned for exciting stuff like Hawaii, more trips to hospitals near and far and more!

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