I've been on pins and needles all week, waiting for Keandre's doctor to call with results from the biopsies. To be honest, I didn't expect good news. Keandre flares so easily. The last five foods we tried to add to his diet were a fail. And he's been affected by the wind and high pollen count in the last two weeks, too. (For some people, EE and EGE have an environmental component.)
So it felt like a little miracle -- God's gift and encouragement to us and our son during a difficult season -- when Dr. S. called this afternoon and said Keandre SCOPED CLEAR! Amazing. Something to cry happy tears about! :)
For the EoE moms who read here, last July Keandre had 4 eos in his esophagus, and 37 in his stomach. (At diagnosis in March '11, it was much worse than that!) Now they found one eosinophil in his esophagus, and NONE in his stomach.
Eosinophilic Esophagitis (EE) is an uncommon and difficult condition to treat. Eosinophilic Gastroenteritis (EGE) is far more rare, and harder to treat. Our little guy has both conditions. Both are, physically at least, controlled right now! He is not consuming elemental formula or steroid slurries to coat his esophagus.
Although this news made my day, Keandre's response was less than I hoped for. And yet he was right on. A first, he smiled, pleased with the news that his tummy looked good. And then, for the next hour, he was grouchy and needy. Finally, I figured it out.
It's great to hear that you're doing better. But when you still experience daily pain, it's a small comfort. And when you sometimes struggle to swallow the few foods you're allowed to eat, it's a scary feeling.
Thank you, THANK YOU, for your prayers and support over the last few years. You have blessed us greatly!
Please continue to pray for wisdom for Andy and I and Keandre's doctors as we continue down this path. Please pray for pain relief for Keandre, and healing for his heart as he daily faces the reality that he cannot live like other kids his age.
We know the Lord loves our little guy deeply, and has all his days planned out before him. He has sustained us through many struggles, and we are hopeful for the future.
2 years ago