As a person who writes a blog, it sucks to be struck wordless.
I had a 2 hour drive home from Willow’s doctor appointment today and that line is all I could come up with. That’s because I am stinking speechless (emphasis on stinking as we spent a total of 4 hours in the van and ate greasy fast food on the way home).
I just don’t understand how to explain what happen today.
Willow does NOT have celiac disease. In fact, I watched a doctor change her chart!
None of it makes sense. Even Willow’s doctor couldn’t explain what happened. He said he has theories, but no answers. So, in my mind, that means only one thing:
God is real and nothing is impossible when you believe in Him.
Nearly a year ago, a routine blood test showed Willow had celiac disease. The pediatric gastroenterologist we saw told us he was convinced our youngest daughter had the disease as the blood test she took is 96% accurate. People with Down syndrome are also at a higher risk for celiac, in fact roughly 1 in 10 will be diagnosed with it at some point in life. While the doctor prepared us for a gluten free lifestyle, he told us to keep gluten in Willow’s diet for the time being as he wanted to retest her numbers in a few months before doing a biopsy to confirm his diagnosis.
Despite a gluten filled diet and despite her doctor’s theory that her numbers would go up, Willow’s numbers actually went down when we retested her blood a few months later. Technically, she still tested positive for celiac but it was now labeled a “weak positive.” Nevertheless, Willow’s GI doctor pushed on with his theory that she had celiac and just needed a few more months on gluten to give us the confirmation we needed.
That confirmation never came. Willow’s latest blood test not only shows lower numbers but also normal numbers! Willow is no longer testing positive for celiac!
As Willow’s doctor delivered the news to me this morning, I replied “I’m confused.”
He quickly snapped back with a smile, saying “What you mean is “This is fantastic!””
He’s right! It is! It just doesn’t make sense! How could things could change so dramatically in a year?
According to Willow’s doctor, something made her body react to gluten last year at this time, and whatever it was, is now gone. Will it return one day? We don’t know. That’s why we’ll keep testing. In the meantime, we need to celebrate!
Willow’s GI doctor laughed when I told him that Willow’s neutropenia also appears to be gone. That was something doctors were convinced would be with her forever, too. Are the two things related? I have no clue. I’m guessing her gastroenterologist and hematologist are confused enough by Willow, they don’t need to be sharing notes on her.
In the words of Willow’s GI doctor, “People with Trisomy 21 are some of the most complex patients you’ll ever find.”
True. Willow never ceases to amaze me. Neither does God. He is good. Now if you’ll excuse me, I’m going to go celebrate today’s news by enjoying one of His greatest creations: a doughnut.