Thursday, May 03, 2012

Cheer Up, Sleepy Jean

I suppose I should update while I have a few minutes.  The girls are currently playing "fishing," which involves them running from the couch across to the love seat, dragging a plastic fish from the toy kitchen and a bunny wrapped up like a mermaid tied to a shoe string.  The entire floor seems to be the "ocean," as every time they run from one couch or the other they scream, "Get out of the ocean!!!"

Who knew my girls cold walk on water.  I guess that puts them in the same ranks of this lizard.... and right behind Jesus.

Now, back to the updates before they notice I'm missing.

Lydia's appointment went AMAZINGLY well.  I think the part that shocked me the most out of the entire hour was when the doc walked in, 30 minutes late, and apologized for her tardiness because she was rereading the charts.  Because she hadn't looked at them in two months (when we were assigned to this doc).

Honest to goodness... who knew doctors could actually READ charts?  I thought they just liked to carry them around to look professional and have me verbally catch them up with what happened last appointment, the months in between and what we were set to discuss on this appointment.

This must be why New GI is a member of The Big League.

I love The Big League.  I wish we could have been here 2 years ago.

New GI has said Lydia has Celiac's Disease.  Her stomach biopsies show classic, nearly fully formed signs as does her lower intestine.  When we told New GI she'd had had blood testing done and ruled Celiac's out, New GI said Old GI never sent them any blood test results.  New GI went on to say all that was missing in the biopsy technical term verbal picture she drew us was a tail like thing.  She suspects the tail like thing isn't there is because Lydia just hasn't been exposed long enough for it to form, yet.  (most Celiac patients aren't diagnosed until LONG after the age of 3 years old)

Essentially, while Lydia might not have the official blood tested genetic form of Celiac, if that's what her blood tests truly show (she asked me about numbers I knew nothing about and showed physical facial signs that she doubted what I was telling her was the full story-- probably given what we informed her about we were told of the biopsies was only half the story), she does, in fact, have Celiac in some form or another.

I look at it this way, my grandmother has emphysema-- the genetic form.  Which means, she would have it whether or not she smoked in her life time.  That doesn't make her breathing is any worse, because it's genetically diagnosable, then the breathing of a gajillion number of patients who have been diagnosably proven otherwise.  These people can't breathe right, regardless of genetic testing or not.

Lydia can't have gluten, regardless of genetic testing.  Her signs, symptoms and biopsy results all play to this same fact.

The next stage of this awesomely entertaining roller coaster ride is another round of scopes in two weeks.  New GI expects to already see improvement with having Lydia off gluten for 4 months.

I kept saying through out the appointment, "I think we're missing something.  I just feel like, some days, her bad days, there is SOMETHING I'm missing."  New GI reassured me, she doesn't think we're missing a thing.  All her issues probably stem from gluten.  Any other food issues are just intolerances and the next age children start to outgrow these intolerances is around 6.

{Oh what can it mean...}

With any luck, in three more years, Lydia will be less reactive to her more than two hands worth of food intolerance. 

{To a daydream believer....}

Can you IMAGINE the world of cooking opportunities if that proves true? 

{And a homecoming queen....}

And more good news!  While they are in there doing the scoping, they're going to keep her for 24 hours with a tube down her nose to see how well her refluxing is or isn't going.  If life is good, she gets to come off Prevacid!  If life is bad.... she is currently, already, taking an adult dose.

Who knew?!  Just another thing Old GI failed to inform us of...

New GI will visit that bridge when and if the time comes.

Wouldn't that be nice?  To have your 3 year old not only off medication.... but off ADULT DOSES of medication? 

Ahh, yes.  I love The Big League.  A lot.


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