Eliza Grace was born on March 15, 2006, at 26 weeks, 4 days, weighing 1 pound 4 ounces and measuring just 11.5 inches long. She is the light of my soul and this is the story of our life in the big city.

Wednesday, March 3, 2010

"Severe." Kind of Harsh, No?

Another evaluator has waltzed into our lives and tangoed her way out just as quickly (which I expected since I knew she was only going to evaluate Eliza's feeding skills). Lovely woman, seemed to be quite knowledgeable. In her wake is a tidy report summing up the state of Eliza's feeding. Of course the only word I see on the whole flipping page is "severe." Severe dysphagia, a very fancy way of saying "can't chew or swallow".

Now lest you think I hadn't notice this little problem before, you need only read about a third of my blog posts since Eliza's not eating is an endless source of angst for me. Eliza's dysphagia in the oral phase of eating has gone from mild to moderate to severe. Not that it has gotten any worse by objective standards, but the peers to whom Eliza is compared have moved waaaayyyy beyond being able to eat a cheese puff. So were I to compare her to, oh say a 6 month old, Eliza's dysphagia would be mild at worst. Not so when compared to even a 3 year old! The comparison to even the most inept 3 year old nosher puts Eliza in the "severe" category.

Uggh. I don't like "severe." Nope.

Oh, and to the next person who witnesses Eliza eat said cheese puff and says to me "but she eats," I will be forced to smite you. :)

9 comments:

Sarah said...

Sometime, in an email, I have to tell you a story - every time I hear the word smite I can't help but laugh. But it's not comment fodder.

As far as severe - well - I can tell you (if it makes you feel any better) that she is far far advanced compared to Emery.

And if it makes you feel any better, on every summary I get from Emery's feeding clinic his diagnosis is "feeding disorder, NOS, with parental mismanagement."

The diagnosis stays regardless of how much I argue about it. Apparently it's to 'get me services.' Pssh.

Smite.

Anne, Eliza Grace's mom said...

Perhaps Sarah we can smite whoever has used the words "parental mismanagement." I will be happy to be your co-smiter.

SpeasHill said...

OO OO OO! Can I join in the smiting? I mean, I've got the title to go with it, right? :) Sorry it's so in your face again. Something about seeing an issue or diagnosis or whatever in writing is even more disheartening to me, even if it's not new.

So, let the smiting begin.

Anne, Eliza Grace's mom said...

Looks like we'll have a regular smiting party going on here ladies!

Mel H. said...

I totally agree. Sometimes, even though I am fully aware of whatever delay Daphne has, when a stranger types up a diagnosis and I see it coming out of my fax machine, it just sounds way too harsh. It's annoying when the delay is blown out of proportion, and equally annoying when it's dismissed by otherwise well-meaning people.

SZeeagers said...

Hi just checking out Eliza's blog.
I can't imagine what you have been through with Eliza or are still going through.I just wanted to say that she is lucky that she has a mom like you.She is a very beautiful girl,but you know that already.

Anonymous said...

Maybe this will cut down the time one has to argue with the insurance about paying for her formula from 10 hours a month to 8? But I am probably too optimistic there!

Anne, Eliza Grace's mom said...

Anonymous:

I like your optimism and at heart I really am an optimist (really). And I think you are right that the kind folks at United Healthcare Oxford may actually stop arguing. But I have to admit, part of me might miss the opportunity to write caustic yet witty letters to them :) They have been behaving themselves lately so maybe they knew this was coming!

Natalie and Abigail said...

Yikes to Sarah - "parental mismanagement"??? that's awful!

Anne - I'm certain that somewhere in the health care system you have a fan club of people who appreciate your wittiness and writing style - even in your "strongly worded letters" (one of my favorite lines from Titantic - the massive understatement that it is!)

I think you should design special purse size smiting wands - then you can whip it out and wave it at all the people who say stupid things to you!