Endoscopy

"CheeeTH!"

(This pic was taken before the procedure)

A couple of weeks ago Abby had the big, long awaited endoscopy. She didn't have it done because she's had any sort of concerning symptoms (aside from the explosive stools which are gone now that the parasite is gone) but because she had a screening for Celiac Disease-- a screening that's pretty much standard for a 3 year old with Down Syndrome-- and came back with "elevated levels". Which meant she needed to see a GI specialist, who in turn ordered an endoscopy. But they did tell us before it was done that Giardia (parasite) can mimic the signs of Celiac in a blood screening. And she had only been a couple of weeks over it.

So we did the endoscopy, and the actual procedure went great. She was a cute little trooper in her green scrubs. The staff was all super sweet and the nurse even carried her back instead of wheeling her back on the bed.

When it was over (and it was fast) they came back and got us. We followed the nurse, came around the corner, and there she was- the cutest little sight. Sitting up on the bed surrounded by a pile of blankets and sheets holding her little pink sippy cup of apple juice. She had lines on her cheek from "sleeping" and her eyelids still looked incredibly heavy. That was the first time that Abby has had any procedure done and in completely melted my heart to see her sitting there. To those of you who've had children go through surgeries both minor and major- I don't know how you do it. This was such a small taste and I just wanted to scoop her up and take her home right then.

But we sat for a little longer while she came out of the anesthesia. And then we had an unexpected visitor. A beautiful 20-something woman with dark hair and glasses came around the corner. She had a Vanderbilt Hospital ID lanyard around her neck. Our nurse said "Oh! Guys this is Jessica. Jessica, meet Abby. Abby has Down Syndrome" To which Jessica's face lit up a bit as she replied "I have Down Syndrome!" We actually met her at church years ago (right after Abby was born). At that time I was still heavily processing this unexpected diagnosis and what it meant for my tiny daughter. To meet Jessica three years ago was an odd mix of comfort and difficulty that I still can't really put into words. But to meet Jessica now... was nothing but encouragement and hope. This amazing young woman is on staff at Vanderbilt through Project Opportuniy. She told us about how she works at the hospital changing beds and refilling Juice boxes among many other tasks. I really really enjoyed sitting there talking with Jessica for the few minutes that we had. It was an honor, actually.

Anyway, we packed up Abbs and took her home. Then about a week later we got the results. And to the best of my understanding, this is our news: Abby does not currently have Celiac. But based on what this doctor has seen in other patients with DS and/or Celiac- she's developing it. And would therefore benefit from a gluten free diet. *BIG sigh* And he did also find something else... its complicated but basically its most commonly seen in people with Cystic Fibrosis. Now, he said that we shouldn't be too concerned because he doesn't really think that she has cystic fibrosis. But he wants to do a genetic test just to be on the safe side. And given that taking Abby's blood requires heart wrenching screaming and 3 grown men to hold her down- they're going to do the test in January when she goes back to the DS clinic and they'll be drawing her blood anyway. And they'll also keep screening her for Celiac to see how and if its developing.

The bright side of all of this to me is that as of right now- she doesn't have anything! Its all potential. And its all down the road. Which gives us time to pray. For complete healing before it even starts. And thats what I'm going to do.

And as for the gluten free diet- I'm waiting just a bit. I'm going to gather information on how to eat that way, what to eliminate, what the heck I'm gonna cook, etc, etc and my goal is to make the gluten switch when school starts. So if you have any amazing gluten free diet sites, tricks or suggestions, by all means throw 'em my way. Seriously, lol! You can email me at spencerchics@yahoo.com

So, I went later and looked up Project Opportunity and found this video. I wanted to share so that you can see this sweet young woman for yourself. She's the one in the pink scrubs. ;)