Tuesday, June 2, 2009

It's true. REALLY!

I have become so very accustomed to reporting bad news.

It is almost harder to talk about something positive. But, low and behold, I am in receipt of excellent news.

I was cautiously optimistic on Friday when gastroenterology phoned and indicated that Elliot’s most recent liver function tests were normal. “Normal?” I asked! Normal liver enzymes? I tried not to become too elated. I did not want to jinx the remainder of the tests.

We visited with the most outstanding rheumatologist known to man on Thursday. I loved the doctor. I don’t love many doctors. This doctor was very calming…but very matter of fact at the same time. As I have noted previously, I can now throw bedside matter right out the window. I don’t care just how “nice” the doctors are anymore. Give me the facts, sans any fluff. Tell me what’s wrong and how we can or cannot fix it. This doctor ran each and every test in the book. This doctor asked for a photocopy of my long and very technical diatribe of questions. This doctor took me seriously and addressed each and every concern which I presented him with.

This doctor…get this…

CALLED ME TODAY AND NOTED THAT ELLIOT’S ANA WAS NEGATIVE

HIS TESTS FOR AUTOIMMUNE DISEASE (INCLUDING AUTOIMMUNE HEPATITIS, LUPUS, A MULTITUDE OF THINGS) WERE NEGATIVE

ELLIOT, IN HIS ESTIMATION, IS HEALTHY!

Yes, I said it, HEALTHY! They went so far as to tell me that Elliot did not need to be seen in their clinic again. WOW!

I am literally in awe. But…you know me…cautiously optimistic. My son still has liver fibrosis and we do not know what has caused it. Children’s is bringing on a stellar liver specialist in July. We will more than likely run additional tests...run enzyme tests again. We need to know what caused said damage. BUT…

The primary and most logical cause for the damage was autoimmune hepatitis.

My son does not have autoimmune hepatitis.

What I am assuming, the next logical assumption, is that Elliot’s gallstones caused the fibrosis…they “must” have moved out of the gallbladder. They were not present in pathology. Where are they now? Ahh, questions. But, the good news…the best news in over a year of hell…is that Elliot is not suffering from a horrific autoimmune condition; a condition which would have required steroid treatment, leaving him oh so susceptible to infection. No steroids. No hepatitis. Just my boy.

Can we really focus now on teaching our son? Can we focus on his oral aversions? How about we try to teach him to eat…to communicate…to walk.

Can we focus on something other than an autoimmune condition, a strange process where the body attacks itself?

I do believe so. I think I will frame his eleven page lab report. I think I will stare at it in amazement!

I have always said that Down syndrome is “cake.” This other stuff has been hell. Onward and upward for now. Go Elliot GO!!

14 comments:

Kelly Zimm said...

Terrific news, Michelle! I'm thrilled to hear this!
Go Elliott!!

amy flege said...

wooo hooo!! i am so thrilled. its like a miracle!!!!!!!!! praise god!

jenhiatt said...

Yay!! I am so thrilled to hear that!!!!!!

Mrs Wibbs said...

that's just fabulous news, honey...!!! Praise God for that wonderful doc :) Xoxo

Mommy to those Special Ks said...

YAYYYYY!!! You SO deserved this GREAT news! We are praying for more and more and more! :) Praise God!

Pam said...

YES!!!!! That is the best news ever and made my rotten day SO much better!!!

Love you guys.

datri said...

So happy to hear this news!!

My name is Sarah said...

Great news!!!

luvmypeanut said...

Congrats! You've all earned it!!! PHEW!!!

All 4 My Gals said...

Beautiful news! Praise God!!!!

Jessica said...

That is the best news ever!

Carey said...

Oh I can't wait to hear more about your wonderful, fun and exciting Ds happenings!!! Leave all that medical garb behind for a while!!!

So happy for you all!

hug hug kiss kiss!!!

Carey & Chelsea

Debbie Yost said...

I'm so happy to hear your good news. That little guy (and all of you) needed some!

Michelle said...

So happy to hear the great news!!!