Thursday, February 19, 2009

Vocabulary, like it or not.

Down syndrome. Two years ago, I could not say it. I repeated it over and over in my head, but could not muster the words. Trisomy 21 “sounded” much better, so that’s what I used in conversation. That, after all, was what Elliot was diagnosed with at birth. He had a triplication of the 21st chromosome. Medically, that’s what he had.

After time, I began, however, to embrace the two words. Down syndrome. It began to sound…well, okay. “Down,” inherently, was not a pleasant expression, but really, it was merely the physician’s last name. That’s all…a last name. And Down syndrome is and always will be what makes Elliot unique. Without it, he would not be Elliot.

Other words, or rather conditions, became commonplace, not necessarily associated with Down syndrome, but ordinary nonetheless:

Hypotonia
Hydrocephalus
Dandy Walker
Tethered spinal cord
Laryngomalacia
GERD
others...many others and way too many to list

While I can embrace “Down syndrome” because I have to and now, I want to (and many of the above mentioned because therapy, medication, surgery and treatment can somewhat rectify) I cannot embrace these two:

“Autoimmune hepatitis”

And, while not absolutely diagnosed without a liver biopsy, the blood results are currently consistent. ANA present, etc. I cannot get into those “words” as I have not learned enough about them as of yet. I’ll learn. I always do; like it or not.

We’ll head to rheumatology next week. To rheumatology and to pediatric surgery, as gallstones are also present.

If absolutely diagnosed, we will begin steroid treatment and we will pray. We will pray because, in a nutshell, my dear boy’s precious body will begin (or has begun) attacking his own liver.

I am stoic. Any of my passionate emotions now have to be the consequence of a simple miscalculation in judgment.

Rational. Perspicacious. Those are good words.

And really, it is easier. The tears do not come anymore…

21 comments:

Kelly Zimm said...

Michelle-
I am so very sorry to hear this...I will be praying like mad for sweet Elliot and you!

luvmypeanut said...

Prayers for our dear Elliot.

Are you doing the gallstones at children's? If so, I highly recommend Dr Cusick for a surgeon. He has done 3 of Alex's surgeries and he is a wonderful guy. Ran into him a few weeks ago at Children's and he asked how we are doing (well Alex actually ran directly into him! LOL). If they can do the surgery laprascopy, it's really an easy surgery on them. Alex did well.

If you need anything, let me know!

datri said...

{{hugs}} so sorry to hear this. Down syndrome is easy. It's all the other crap that stinks.

Shannon @ Gabi's World said...

So is this related to Lupus since the ANA is positive?

amy flege said...

oh michelle. I am sitting here in shock. i really thought he was going to be OK. please call me if you need too!! ok?

Melissa said...

Michelle...I am so sorry to hear the latest news. We're always praying for him.

Michelle said...

Yes, I do believe it is Cusick. And yes, I too thought Lupus Shannon. That has yet to be discussed. Funny, every time I bring something up with current pedi, she looks at me like I'm nuts. But, here you are, Shannon, a medical professional, saying "Lupus." I consult with a new pedi group next week as well! Elliot does not present with symptoms of Lupus, but if in early stages, I don't know that he would?? We'll see. Prayers are all very much appreciated!! xo

Debbie Yost said...

I am so sorry. I was hoping the test results would give you something easy that could be dealt with. I'm still praying for that. Keeping you all in my thoughts and prayers.

Michelle said...

I'm sorry to hear Elliot has a dx to deal with now :( Sending many prayers your way.

My name is Sarah said...

We are praying over here. Hope more answers are forth comiing soon.

Carey said...

Oh Michelle, how could anyone get used to those words. Is that something you had suspected? I am so sorry. I know you will seek out the best of the best to get Elliot what he needs, and as you push through as you always do, we will pray.

Please let us know if there's anything we can do! Maybe I need to drive up there and help with Isaac?! You know I would! Hang in there friend.

All our love and prayers, Carey & Chelsea

Mommy to those Special Ks said...

Oh no :(. I'm so sorry to hear this! We will be praying!

Christina said...

HUGS!!! Lots of them, coming all the time from us in Austria!

Terri said...

I came here from Amy's blog. My thoughts & prayers are you with you and Elliott.

momtojesse said...

I'm so sorry to hear about Elliot. My prayers are with you both. Hugs.

Jeanette said...

I found you through the Fledge Farm. I am sorry to hear about that your sweet Elliot is going through this. I will add you to our prayers.

All 4 My Gals said...

Oh honey, I am so sorry that wee E is going through something else. Many prayers for you and for your boy.

Becca said...

I'm so sad to hear Elliot's so sick. I'll be thinking about you guys, hoping for the best. Hugs from me and Samantha!

Seton Sounds said...

Prayers coming from our house.

Chris said...

Michelle--it has been awhile since I popped on by here. I am so sorry that hear what you and Elliot are going through. Praying for you.

Michelle said...

I'm so sorry to hear the news. We won't stop praying for E. Please let us know if you need anything.