Tuesday, June 26, 2012

Sixteen Point Five

As in sixteen pounds, eight ounces.  This is the weight Evelyn has more or less been at since February when she was 9 months old (she was actually just under 16 then).  We had her follow-up appointment from her 1 year well check yesterday.  Before I share how that went, I will add that the girl has been eating like crazy lately.  She was a little off when we were in Hawaii, but since we got back (including when she and I were in Colorado last week), she has been eating really well.  Still not a huge milk fan - but eating much better.  We were pretty confident she had grown because she seemed taller (legs looked longer in the high chair/car seat, she felt longer holding her on the plane, etc.).  Well...she lost an ounce and grew 1/2 an inch since May.  This takes her off the charts on the bottom for both height and weight now.  Her doctor has ordered some biochemistry labs and a sweat chloride test.  The biochemistry labs will test for blood count, thyroid hormone, and some other things.  The sweat chloride test is the standard text for cystic fibrosis.  What?!

Apparently low weight gain can be a precursor to the more serious symptoms of cystic fibrosis.  I had always thought of it as a lung disease, but after researching yesterday, I found out it can also manifest in the pancreas.  Cystic fibrosis is a disease where your body does not thin out mucous effectively, so mucous can build up within the lungs or pancreas.  When this happens in the lungs, children usually have a lot of asthmatic symptoms, pneumonia, and/or lung problems - something Evelyn has not had.  When it happens in the pancreas, the mucous build up can keep the pancreatic fluids from secreting into the intestines, preventing vitamins, and particularly fat, from being absorbed by the body.  From what I researched, when this happens kids usually have really fatty or slimy stools (which Evelyn has not had) and are fairly inactive (which Evelyn definitely is not!).

She did the blood lab right after our doctor's appointment - our children's hospital has a lab in the same building as our pediatrician (they are affiliated), so we took care of it there.
That lady poked me, right here...
She is not a fan of blood draws...but let's face it, who is?  Fortunately we didn't have a repeat of her time at Driscoll in January and they were able to get a good vein.  She cried from the point of the needle going in until the needle came out.  When the phlebotomist took the needle out, Evelyn took a deep breath, sighed, and was done crying.  It was cute.  Poor baby.

This morning, she had her sweat chloride test.  For this test, we had to go to the local children's hospital laboratory. 
She loved finding a table and chairs that were her size in the waiting room...
For this test, they attach electrodes to each arm to stimulate the sweat reflex in the skin.  This takes about 10 minutes for each arm.  They then wrap up the arm in plastic to collect the sweat.  They had me put a sweatshirt on her, then bundled her up in blankets to warm her and help her sweat.  We sit this way for 30 minutes, then the test is over.
Here we are waiting our 30 minutes...she got to watch Tangled, so she was pretty content (and it was near nap time, so she was sleepy!)
 The lab tech is taking her sample off now...
You can see the gauze (which collects the sweat and is then sent to the lab) wrapped in plastic.  She actually had something like saran wrap wrapped around this about 50 times as well.
Toward the end of the 30 minutes of her second arm, she was getting a little over it.
They send the samples (one from each arm) to the lab and then test the sweat for chloride levels.  Apparently excessively salty sweat is an indicator of cystic fibrosis.  There are two types of CF - the first type she tested negative for in her newborn screen at the hospital.  Her pediatrician said yesterday that it isn't impossible, but that it's more rare for a child to have a negative newborn screen and a positive sweat test.  The lady in the lab today also said that she has only seen a handful of positive sweat tests in the 10 years she has been doing it.

We are supposed to be getting results for both back in the next day or so.  I'm just ready for them to realize she is just small and nothing is wrong with her!!!

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