Thursday, October 16, 2008

October '08 Remicade Day

I hear my hubby downstairs washing the dishes as I am recollecting today's remicade day for Charlotte. Happy Anniversary to us :) We had ice cream tonight with the girls & celebrated 9 years!!

Today's remicade was so nutty, i didnt even THINK about documenting with pictures as i have for every other monthly adventure. Ooops...

We started out with an early morning getting down to the tv station to film a segment that will air Friday morning (october 18th) & will be online after it airs early in the AM. I spent some hours the night before making sure my talking points were buttoned up, succinct, pertinent & practiced in the car on the way into downtown portland this AM. I wasnt sure how comfortable I felt being in front of the camera when i really enjoy my past life of the PR girl prepping OTHER people..... but i think it went ok & hope that it comes across well..... I was overly prepped and felt very underprepped at the same time. Did I say enough, did i say too much, were my facts straight, did I encourage excitement for the Ball???

Now my client, wouldnt take my PR advice. There was no smiling, she was classic Charlotte meeting a stranger, answering NO to every question. "Does she know she has arthritis?" "NO!" If you know & love Charlotte, it will make you laugh. If you dont know her....big sigh... I wonder how it will come across :) She's my little old lady in a 3 year old body. Dont mess with her in a dark alley, she will take you out :) :) :)

Is this what Charlotte looked like on TV today? you bet it was!!! Did EVERYONE Make a comment ALLLLLL day long from the restaurant, to nordstroms, to the hospital - of course they did!

Then a morning of breakfast & shopping before settling into the hospital. Breakfast at the Bijou where I went with my BFF 9 years ago that morning to eat breakfast before getting into my big cream poofy dress, meeting my sweetie, bawling my eyes out as the bagpipes played while i walked down the aisle, forgetting to kiss my dad out of nervousness & continue crying during my vows & ruining my makeup (cuz its what i do!).

Only 16 more remicades to go to fulfill our 2 year commitment (ha - its really not a COMMITMENT per say, but Dr. Foster's recommendation is 2 years).

So this Remicade day went like no other - because that's how they go - there is no cookie cutter day. We did the right arm and the IV went in like BUTTER!!!! Nurse Priscilla was amazing & she said that the right arm has a GREAT vein,we are going to continue using it till we hit scar tissue (ugh).

But then Charlotte wigged out. And I mean a complete out of body freakout. The iv was done, it was in "no more pokes" yet she was still wigging out. And the culprit: BENEDRYL. Kicking us, not letting the nurses put the stint & tape on, screaming, sweating, I thought she was going to pass out.

So we are going to forgo the benedryl for the next round, the Thanksgiving 08 round & see how she does..... on this day, she wigged, stopped, cuddled into Daddy & slept in his arms for 1.5 hours!

I appreciate our friends Dawn & Cindy for their camaraderie & support & LUNCH :) My dad surprised us too & came out & saw what this day was all about. He watched, asked a lot of questions as an ex-Army medic would & Ryan got to entertain him pointing out "my company owns that, we sell that & that & that...." oye vey! I have posted on here before about going into a hospital with Ryan.... :) :) :)

And this VERY full day of tv appearance, remicade, anniversary, Costume Ball.... is coming to a close. But let me get one more plug in about the Costume Ball before I say goodnight because its been my mission for several months now, & its my passion to DO something for Charlotte & this has been it....

The CARRA Costume Ball is almost upon us. I cant SAY in words how excited I am for this event & how its come together! I also cant speak highly enough about my co-director Laura, mom to 2 1/2 year old Addison (extended puaci jra) who's amazing organization, drive & dedication has made her a JOY to work with! We have already been talking about next year!! But SATURDAY first :) & then she & I will celebrate together with some spa time on Sunday. She is a Great Friend & great supporter, a great cheerleader & an amazing do'er! Thank You Laura!

The raffle is bountiful with amazing & FUN prizes!!! Our donors have been SOOO giving & kind!! And the dance... its going to be a blast! We have some girls coming from the local gymnastics/dance studio to perform in the middle for all the families - its just going to be so much fun! I look forward to meeting JRA families I talk to in email but haven't met, I am excited to see old friends from college, from work, that are coming that we never get to see often enough. This is a CELEBRATION night! Much like our wedding 9 years ago....

And you know what.... I just might cry!
Cuz its what i do :) say gnight Gracie.... gnight!


Lisa Milton said...

Sorry to hear it wasn't the easiest day, yet you always seem to pull through. And how can you not?

Look at Charlotte dolled up. She is something. :)

Happy anniversary...we will all celebrate tomorrow and it will be good stuff.

Now, take care. Sunday's a comin'...

(Gs at the end of words are overrated during this election cycle. I now appear approachable and folksy.)

Dry Land (in search of...) said...

You brought tears to my eyes remembering that wonderful day 9 years ago! Now we have 3 lovely girls to help celebrate at the Ball, a way which will help towards improving the life of others!
Such a wonderful event that you and Laura have created! I'm in awe and full of pride!
Love, Mom