Tuesday, September 18, 2012

Next!

To follow up on Libby's fructose is it? isn't it?...
It isn't!  Good news to be sure, but now we are going to test for lactose intolerance.  I understand that lactose intolerance is much more likely to be the culprit of her daily stomach aches, and while it will be wonderful to finally figure this out and give her some relief,  oh how I dread having another food group to circumvent!  Milk, cheese, butter...

I want to tell you about this little girl of ours.   This test was a 12 hour fast followed by a four hour long waiting game at Children's.  Blow into a tube attached to a baggie for the baseline measurement.  Come back in an hour.  Blow again.  Go, come back, blow.  Go, come back, blow.  Go, come back, blow and you're done!  A very long morning without food or drink, except small sips of water.  She hadn't eaten since 8pm the night before.  She spent the morning chatting, walking around the ground's of the hospital, reading a little, talking a lot.  Never once complaining.  Never once said she was hungry, thirsty, annoyed, pissed, sad, tired.  Now me?... I was all of those things.   But looking down at her genuinely happy, smiling little face and holding her hand throughout the day was the inspiration I needed to suck it up and go with the flow.  As we were sitting on the happy metal frogs that are strewn all over the grounds at Children's she looked at me and said, "Mommy, I just love hanging out with you."  And I you, little girl.


Thursday, September 6, 2012

Like Celiacs isn't enough?!

Well, i never meant to be away for the entire summer... but there you are.  I was.  I was with my fun, energetic, amazing girls having a wonderful time.  No trips to the Grand Canyon or Europe.  No weeklong camps or time in front of the TV... just swimming and talking and laughing our way through the summer.  I always hate when they go back to school.  Honestly hate it!  My life is simply better with them present.  But thankfully they are both happy and settling into 3rd and 5th grade.  I am back to my life between the hours of 8 and 3.  There is always much to do and there never seems to be enough time.

Three weeks ago, Libby had the 3rd of her 6-month check ups and unfortunately (damn damn DAMN!) her numbers went up.  We started 18 months ago with a 140.  Her next was 67.  Her next one was a beautiful 3!!  And this last one was a 29.  WHY? HOW? Damn!!  I can't imagine being more vigilant.  I simply cannot be!  It's not possible.  Is it?

Here is where we are right now.  She has never actually had a day without a stomachache.  She lives like this.  It breaks my heart.  It infuriates her.  It baffles us all.  I asked about the possibility of her being fructose or lactose intolerant.  Her Dr. agrees that there is obviously something else going on besides 'just' having Celiac disease.  Like this child needs more to deal with.  So next week she will be tested for fructose intolerance.   What will it show?  That she now,  in addition to having her diet restricted to all things gluten free,  won't be able to eat all fruits and many vegetables!?  I can't imagine it.  If that comes back okay, then we go for the lactose.  Which evil do we hope for?  Libby herself is pulling for the lactose.  Never a big fan of milk.   The 'Big Picture' has never meant much to her.  Probably better that way as it can be pretty overwhelming.

So, I will let you know what we find out and where we go from here.

Thanks for listening!