I knew I was taking a blog hiatus but I had no idea it would
be an entire year! My last post introduced what would be my first of many
fundraising efforts for CCFA and half marathon trainings with Team Challenge. Here are a few moments from last year...
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| Mile 5 on a hot training run last season |
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| Upon seeing my superstar kiddos at the finish line with these signs, I cried of course. My sister, hubs, inlaws, and neighbors were there too. It was nothing short of fabulous. |
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| My running partner was THE BEST! |
There is a tremendous difference in my state
of mind going into this second year. I show up to training not knotted up
in fear of my daughter's condition, or wrung out from the previous night's
vomiting episodes. I am rested, confident, and fully grounded in a calm and
happy existence because Ayla has had a six month stretch of AWESOME (with three
"minor" exceptions).
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| Feeling 100%!!!!! |
About seven months ago, we discovered that in
addition to her Crohn's, Ayla had a bacterial gut infection called Clostridium
difficile (aka: C Diff). The poor thing was miserable. Excrutiating belly
cramps, projectile vomiting, painful stools 12 times a day. She was wrecked. As
was the rest of the family. We ultimately treated her with a "big
gun" antibiotic called Vancomycin. Within 3 days she was on her way to
being clear of C Diff AND of her Crohn's symptoms! When "Vanco" is
used intravenously, it is a bigtime antibiotic with serious implications. But
we're using it orally, and the drug does not get absorbed into the bloodstream
so it essentially keeps her gut clear of the bacteria that have been wreaking
havoc on her GI tract, without straining her other organs. Of course this means
that she also has virtually NO gut flora, which also has its implications. But
for now, this is what's working, and nothing until this point has given her
relief like this.
We have witnessed this child be reborn in a way. Ayla's
development has now had 6 straight months of free reign. She laughs as she
races her brother around the culdesac. Mind you, he's on a bike and she's on
foot. And she keeps up! Her language development has soared. Our ability to
communicate with her about how she feels and what we can do to help her is so
much greater now. Her height and weight are right on target, which is truly a
gift in the pediatric Crohn's world. Ayla and Jonah have been able to develop a
"normal" sibling relationship now, instead of one revoloving around
Jonah's sick little sister.
I am entering this new fundraising and training
season feeling charged, empowered, and excited. We don't know how long this
drug will work for Ayla, so we feel more than ever that we've got to get a move
on with this finding a cure business. Stay tuned for the soon to be released
"ask" letter. Or, even better, train and run with me!!! 13.1 miles of
running through the carneros valley vinyards to be met at the end with wine
tasting, pool lounging, and celebrating. Anyone? Anyone?
