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12 May 2012 @ 11:01 am
Our Little Mutant  
So I don't know if I've told you all the medical fol-re-dol we've been through with little baby Dove. To recap, she was IUGR and was only 4 1/2 lbs. when she was born.

Then we had multitudinous nursing issues, and I took lots and lots of supplements and prescriptions and had a steamy 3-month fling with a hospital-grade breast pump. We were so in love I was never out of sight of that thing for more than a couple hours at a time. But, like all relationships based on physical needs, we grew to hate each other; Mr. Pump was sucking my will to live. I cut it off and, like so many do, spent the aftermath of the relationship with a bottle in hand.

But eventually Dove was able to nurse more and more, and I gave her fewer and fewer bottles. Which was AWESOME! And I would have enjoyed the feeling of Job Well Done! Except she still wasn't growing. In fact, her growth rate steadily slowed, from 1.6 last fall, to 0.22, to what it is now, 0.03. That growth rate refers to how fast she's putting on weight.

In other words, Dove was always tiny, but she's actually gotten tinier, even while she's grown bigger, if you get what I mean. She was under the 5% when born, which is okay, since a lot of babies are born tiny. But all babies are supposed to double their birth weight in 6-8 weeks; Dove didn't hit 8 or 9 pounds until she was, what, 6 months old?

And she's never made up for it. When her growth rate was supposed to accelerate, hers slowed down. She HAS grown--she's about 13 pounds now!--but she's also 10 months old and still hovering there way off to one side of the size bell curve.

So we switched formulas, and we had me change how I ate (more grains! moo!) and reduced my exercise (in case I was burning too many calories; may I laugh hollowly?) and took her to a pediatric hematologist from Seattle to check for stuff and had her tested for cystic fibrosis and then schlepped up to Spokane to see a pediatric gastroenterologist to check for metabolic disorders, and got the big medical shrug, and STILL she's clocking in at "Failure To Thrive" levels at every doctor's appointment.

In the meantime I'm taking her to occupational therapy for motor delays, because she's also not sitting up or crawling. Oh, she's SMART, don't worry, she's saying words and using some signs and she knows how to wrap us around her extraordinarily tiny pinkies. She's just not crawling.

So then we got her DNA tested.

And guess what?

We FOUND something.


Dove has a chromosome deletion. On the 3rd chromosome. Normally deletions and trisomy are pretty hairy things, and we still haven't met with the genetic specialist from Seattle, who may tell us that her deletion may just make her bitty, or may lead to something tragic and life-destroying, like a fondness for Jerry Lewis movies.

But so far they think it's to blame. Here's the thing: it's really rare. They only know of, like, 7 or 8 other individuals with the same deletion, but it looks like failure to thrive and developmental delays are common among the other individuals.

Oh, it's just so good to know that instead of accidentally starving my daughter by feeding her incorrectly (which had always been the fallback before) actually I was unwillingly starving my daughter by giving her faulty genes.

No, actually, I'm kidding. I'm actually really relieved to have a diagnosis, something to tell insurance people, something to blame for the lack of growth, and a really cool conversation started to boot.

Also, we've got all these decisions to make now that we know eventually Dove will join the X-Men. What will her superhero name be? Battle-Dove? Does she have another power besides making beings twelve times her size obey her every command? Cape, or no cape?

My oldest daughter, Slayer, swears that the 3rd Chromasome is the Ugly Gene, and since Dove's missing one of hers, that's why she's twice as cute as most other kids. Ah, I had wondered. Good to know.
Tanyamortuus on May 12th, 2012 07:09 pm (UTC)
In my experience, simply having a diagnosis relieves so much stress, even if a diagnosis is only the beginning. So congrats on a diagnosis! Prayers and fingers crossed that this diagnosis leads to good things that can be done so Dove has a wonderful, happy life.
libermama on May 13th, 2012 06:59 pm (UTC)
I agree; diagnoses makes breathing easier! And you made me smile with your attitude about it all-- oh, the possibilities! :-D (And Slayer is a VERY clever girl!)
happyorganisthappyorganist on May 14th, 2012 04:07 pm (UTC)
Oldest sister sounds sweet.
Hope everything works out. We are starting our youngest in speech therapy 'cause he is behind verbally.
Anyhow, you have sure worked hard with your baby girl. Sounds like a lot of work.

and btw I am printing out the second paragraph of your post and putting it in my journal b/c you are that funny and how in the world do you write some of the things you write - it's just too funny and clever. Take care kiddo.
SachikoSayssachikosays on May 14th, 2012 07:51 pm (UTC)
thanks so much, everyone, I love you all. :)