Day 1

The day started out like every other day…..no, actually it didn’t I set off the fire alarm turning on the heat in the hotel room. Then lost my glasses, and couldn’t find one of Katie’s shoes, but all was righted in time to catch the shuttle to the hospital.

Borg or Oompah Loompah?Today was a very busy day. I found out Katelin will be receiving (hopefully) the lower dose, but for the longer time of 26 days. A few girls from now the dose age will be increased.  She had three blood draws, two EEG’s and two EKG’s. It was pretty non-stop, she even had to eat lunch while all connected. My girl was a trooper! Better than that, she rocked it! Smiling most of the day even with all that going on.

History is madeThey let me give her the first dose, it was like the count down to a missile launch. Everything had to be just so, she had to be connected to the EEG machine, precision timing and then….go!

It’s hard to explain the tremendous surge of knowledge that this was a bit of history making, that Katie (and I because I’m her mom) just became part of scientific history in some small way, it must be how scientist feel on the verge of discovery and then! It’s a reality. Just feeling very honored and proud of Katie.

We were set free around 330 and went to the Family Services floor to do a bit coloring, lol.

All clean and ready for story time

I think I will use coloring as a gauge for the trial period and see if how and what she colors, changes.

So, supper is done, second shower in process and then time to snuggle with a couple of good books and call it a day. Pippi Longstocking is tonight’s reading, but none of her adventures are quite like this!

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3 Responses to Day 1

  1. Linda E. Williams says:

    So proud to know you and Katelin. Our prayers go with you on your sojourn through medical discovery, patience, and love. I believe in you and miracles and the blending of both. Love and hugs, Linda W

  2. Rose & Renee says:

    She is a trooper, and so is Mom. Is that a new fox I see? A fox ball?

  3. melelllan says:

    Yes, her sister Debbie got it for her 🙂 she hasn’t thrown it yet, lol

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