Tuesday, February 07, 2012

The Unexpected

We were expecting a Celiac diagnosis.

We were expecting, upon finding out the negative results, to be redirected in testing.

We were expecting medical professionals to hold our hands and walk us through to the next journey of diagnosis.

None of that happened.  From the GI Doc I loved so much in the office, we received none of that.

Lydia had her 3 year check up almost three weeks ago.  I angrily begged the pediatrician to do something.  To fix something.  My broken child, whom, it seemed, only Jer and I could see just how broken she was. 

He gave us a two month prescription for Axid to work along with the Prevacid in hopes that doubling up for the short term will heal her system faster.  He also handed us a prescription for Levsin to help with her crippling stomach pains as they're happening.  An issue the GI has seemingly overlooked, no matter how many times I've brought it up.

The pediatrician seemed shocked that neither tactic had been tried.  And as I insist that we need a new referral to one of the top Pediatric GI's in the country, he looks at me with caution, "Her problem must be really affecting family life at home..."  How much so, he has no idea.

I don't know how to describe to outsiders what it's like when your child is in so much pain some days you'd do anything, give anything, to make them better.  I don't know how to describe the differences of good days and bad days accurately without conceding with, "You just have to see it to understand."  Yes, she could be fine one minute and not the next.  No warning.  No rhythm, rhyme or reason.

I didn't expect, when I stamped my foot down and decided we were going to go gluten free no matter what any damned test said, that the lack of support from GI Doc would anger me so.  GI Doc would rather "wait and see" how the medication does.  IIIIII would like to FIX the problems instead of stopping dead at medicating the symptoms.

I didn't expect that whenever someone politely asked for an update, I rant, rave and wave my hands about with such venom in my voice.

I didn't expect so much anger to fill me up.

The entire month of January I've spent tapering down all things gluten in our house.  February 1st was our deadline, the day Lydia would be completely gluten free.  That day actually came almost a week early. 

She's been gluten free for about a week and a half, almost two weeks.  The changes-- oh, the changes-- unexpected.  To say the least.

Sunday should have been our first clue, but we missed it.  I took her to church alone, as Jer and Kyra attended the Saturday evening service, and Lydia was the easiest she's ever been.  Now, she hasn't been atrocious in church for quite some time but she's still needed constant reminders. I chalked it up to one-on-one time.  But that wasn't so.  Not this week.  This week Heaven shone down, directly on her.

Monday, yesterday, I notice she's not hungry all the time, nor has she been for several days.  My child, who regularly eats three full breakfasts every morning before I cut her off as she still begs for more all day, every day, is satisfied.  She eats in peace, moves on with her day.  There's no begging.  No whining.  No tantrums.

I bring up the day's events with Jer.  Together we note how we can't remember, in the last several days, when she's thrown one of her famous tantrums.  You know the kind, the ones where you just look at said child and think to yourself, thick with sarcasm, Oh, isn't 2 3 just a DELIGHTFUL age.

Today, she climbs into the swimming pool with her class with no problem.  She has been with the same teacher, in the same time slot, with roughly the same faces since JUNE.... and has successfully thrown the loudest, tantrumest fit at the beginning of EVERY class before actually climbing into the water and giggling and splashing with the rest of her class.  Even her teachers have laughed as they said, "Once she gets through her initial fit, she loves it!"

After swimming we had a play date, where the only issue was when an 18 month old tried to take a toy she had in a shopping buggy.  She didn't even have a complete and total meltdown!  A simple explanation of how babies don't know better and it wouldn't hurt to share--- fixed the issue.  30 seconds.  A record, I'm sure.

We jetted off from the playdate to ice skating, an early afternoon, right before nap task.  Meltdowns and tantrums are frequent and numerous.  Except for today.  One of the mothers commented how calm she was, even when she couldn't perfect her three second one foot glide and throwing one self to the ice, gnashing of teeth and screams of "I CAN'T DO IT!" are dominant... we had none of that.

She is just so. Fucking. Calm.  And collected.  And how much of this is her meds are finally working and how much of this is gluten-is-the-devil!...?

Gone seems to be the high strung, high energy, high maintenance child.  I'm not sure where she's gone.  Nor if she'll be back.  But right now, the child we've had for at least three days is unexpected.


  1. Hallelujiah!! I pray that you've finally, finally figured out her issues and that she's able to thrive even more so than she was already! Love and miss you all!

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