Monday, January 31, 2011

Look Ma, No Gluten!

It's her favorite meal: noodles with clam sauce. And it's gluten-free!

The nurse called this morning and read the pathologist's report: "Findings consistent with celiac disease."

It's interesting because she originally called to tell me that the latest (and third) blood screening came back equivocal, or in other words, in the gray area. When I asked about the endoscopy results, she said she hadn't seen anything yet. But then after some searching...there they were with a celiac diagnosis. Equivocal blood screening but positive strange.

I am often asked what symptoms prompted doctors to look into a celiac diagnosis. She's short. That's it. Not a single other symptom.

So she's going gluten-free and we're going to watch her grow. And she's doing it with a smile!

Tuesday, January 25, 2011


We arrived before the sun came out this morning. Alyssa put on the blue gown and her usual brave face.

She chose bubble gum scented laughing gas.

I watched her slowly fade from conciousness, was told to kiss her goodbye and assured that they'd take good care of her.

I cried as I was escorted to the waiting room.

We had been told it was a quick procedure but I was still nervous and the minutes went slowly.

At last the doctor came out to tell us that "she did great." We got to see these photos:

Evidently the two on the top show that "her small intestine does not look normal at all." Darn!

Pathology will look at the biospies for definitive results but Celiac is very likely the culprit.

Then we waited for her to wake up.

"That was no big deal at all," was her observation. She didn't even know that they'd had one failed IV attempt. How nice of them to put her to sleep before poking her.

She was loopy and a bit more chatty than usual but she came through it like the champ that she is.

I'm grateful. Grateful for modern medicine. Grateful for friends who are so willing to help with my other children. Grateful for prayers and support of loved ones and most of all, grateful for a daughter who continually amazes me with her courage and strength of character.

We can do this Celiac thing...bring it on!

Sunday, January 23, 2011

A Howling Great Time

It's without question the funnest gymnastics meet of the year! We've been looking forward to our return visit since last year's Great Wolf Lodge meet. The lodge is very Disney-esque in its attention to detail, cleaniness and kid-friendly atmosphere. It's currently all decked out in Winterfest decor.

Even the garbage cans are cute.

We pulled the kids out of school early so we could make the most of our one-night stay. We arrived at about 1:00 and were able to check into our room. The kids couldn't wait to get into the waterpark.

The Howling Tornado quickly became the family favorite. What a thrill!

With virtually no lines, the kids went over and over again.

The basketball hoops will always be a favorite for Caleb.

At about 4:00, I left my family playing in the water while I hurriedly got ready to coach my level 4's in their gymnastics meet. The meets are held right in the lodge in large conference rooms.

My team did so well, smoking all the competition to earn a big 1st place finish.

When I met up with the family again at about 9:00 p.m., they had just finished watching the little clock tower show complete with storytime. The girls were holding their wands and just getting ready to start MagiQuest. It's a really fun, interactive, adventure game which involves using a wand to activate objects throughout the lodge, each a step to the final quest which involves slaying the dragon.

Here's Alyssa and friend, Hailey, on their quest:

The game is turned off at 10:00 p.m. (which I think is just so smart) so Alyssa only got about half-way through. Jon and I put the kids to bed and then hit the arcade for a bit. Nothing like a little skee ball and friendly, spousal competition. Jon won.

We slept in the next morning, filled up at the breakfast buffet and then headed back to the waterpark for more sliding. Such fun!

At about noon, I pulled Alyssa out of the water to get her ready for her level 6 competition.

I was a bit worried about her being worn out after all this fun, but she did great at her meet! She got third on beam and bars and finished third all-around with a score of 35.55.

It was a really long meet but Alyssa wanted to slay that dragon before we left.

Here's Natalie working on her quest (and wearing her wolf ears):

Here's Alyssa activating the telescope with her wand:

At last the dragon had been slain and we couldn't have been more worn out. (The MagiQuest is a lot of running around--up and down flights of stairs all over the massive lodge. But it was such a great kind of tired. Fun memories for the whole family!

Friday, January 7, 2011

Trying Not to Worry

My Dad used to always say, “We’ll cross that bridge when we come to it.” I heard myself repeat those familiar words to Alyssa on Wednesday.

We’d had a follow-up visit with Alyssa’s endocrinologist earlier in the afternoon. It didn’t go the way either of us anticipated. After enduring the growth hormone test in August, Alyssa is leery about appointments with this particular doctor. Our family has dealt with our share of doctors and I must admit, he’s not my favorite. Communication skills are not his forte.

As Alyssa jumped out of the car, I assured her that “this should be no big deal.” Based on what the doctor had told us after the test, I didn’t have any reason to believe that this visit would be anything more than a simple a review of those results and a couple of measurements. I certainly didn’t expect anything new.

First, I was lightly chastised for not following up sooner. I explained that his instructions had been to come around her birthday and yes, we had rescheduled one time. And he is hard to get in to. I was beginning to feel defensive. After all, the last I’d heard was good news so when Alyssa’s school program conflicted with the first appointment, I didn’t think it was such a neglectful thing to postpone for a month.

Next, I was bluntly told that her growth has been very poor over the last couple of months.

Then, I was asked if I’d seen the gastroenterologist. Gulp. I forgot about that! But then I felt defensive all over again. Yes, he had mentioned, over a year ago when she had all those blood tests, that the celiac screening had come back…I believe the word he used was, equivocal. But, he said they would do another blood screening at the same time of the growth hormone test.
When the only result I heard was that “she passed” I hadn’t given a second thought to the celiac possibility. So no, I hadn’t seen a gastroenterologist. I had no idea that the second blood test had produced results that are “over the threshold” for a normal celiac screening.

Based on the two blood tests combined with her poor growth, the doctor has “a strong suspicion” that celiac is the culprit. He recommended we see the GI and have a biopsy.

Then he told me that he had a question about her cortisol level. It also showed an abnormal level that day back in August. What? What is cortisol? Why haven’t I heard this one before? I couldn’t get a straight answer to any of my questions and every time I tried to clarify, I’d end up just as confused. All I clearly understood was that he wanted to inject Alyssa with cortisol, wait an hour and then do a blood draw. I told him I was very tight on time so if we needed to wait an hour in between the shot and the labs, then we needed to get on it right away.

He left the room to get the nurse to start the injection while I apologized to Alyssa.

“I’m so sorry, Babe. I had no idea they’d need to do this to you today.”

“It’s OK.” she said, as she removed her silly bands and pushed up her sleeve.

The doctor returned and we continued our awkward twenty-questions-no-great-answers game. In the end, the nurse got too busy to do the test in a timely manner and I didn’t want to make Alyssa repeat the test if the results weren’t going to be accurate in our now very restricted timeframe, so it will be administered when we return to see the GI on the 18th of this month.

Alyssa took it all in stride as only she can do. But she did immediately begin to worry about having to give up her favorite food in all the world: noodles with clam sauce. She asked if I could make it right away just in case. As the night wore on, she was full of questions about what she will and won’t be able to eat should she be diagnosed with celiac disease. That’s when my dad's old advice came to mind, “We won’t worry about it yet, we’ll cross that bridge when we come to it.”

But I’d be lying if I didn’t admit that I’ve already been mentally traversing the bridge while imaging a treacherous crossing. I went to the grocery store yesterday and couldn’t help but notice the expense of all the gluten-free products. I had to keep reminding myself that I didn’t need to read every label yet. Instead I loaded my cart with all of Alyssa’s gluten-filled favorites while I hoped with all my heart that this wasn’t the last she’d see of them in her lifetime.

We had noodles with clam sauce and rolls for dinner.