Wordless Wednesday - Firsts

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Lessons

So many learned over the last two and a half years. I’m thankful for each and every one of them. We keep on going.

What I find most compelling about Elliot is that his zest never seems to go away. They have cut his skin, removed parts and portions of his body, sutured and fixed, but always left in tack has been his soul. Completely unscathed.

Smiles each and every morning, while others get up on the wrong side.

Laughter and delight in small things, while many fail to notice.

Disregard for ugliness, deceit. He knows nothing but beauty and candor.

They can make thousands of incisions and it remains: a spirit and character full of life, of fitness and heartiness and health.

I would venture to guess that I’m not the only mother who sees it. Many of our children undergo the procedures, surgeries, pokes, prods…outside skepticism regarding “human ability” to keep going.

Would you not agree? The courage is unswerving…and the smiles remain. Nora says he's an angel. Well, yes, he is.

Many ask “How do you do it?” Funny, I don’t do a thing. He does. I simply watch in amazement. I pray a lot and I witness. Sure, I advocate, but only because he does not have the words yet to do so. The expression, however, advocates for itself.

So lessons – those of courage, of course, the most important!

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!!