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Kristen’s Personal Story

Kristen’s Personal Story: Navigating Her 2-Year-Old Son’s Gastroparesis, Redundant Colon, and Reflux

Hi! This is partly my story, but really my son’s story. See my 2 year old has gastroparesis, a redundant colon, reflux and a dairy intolerance. Gosh, i feel like a GI specialist now!

 

I don’t know where to start and I really don’t know how to keep it to 500 words.

 

It’s been a long journey the past two years. We have been to every urgent care and ER in the city. I don’t think I’ve slept in two years either. 

 

But, I don’t want to talk about that. It’s our history now. He is 2 and he is fine. I tell myself this at least three or four times a day.

 

He is fine.

 

He is chronic now, so my hope of it going away isn’t possible. But, we have a great doctor (this is key) and it is managed. He takes medication 9 times a day and that’s not counting the medicine for his asthma or iron deficiency (fun little by-products of everything else).

 

He is fine.

 

If I say it enough it will be true. But in all honesty he is. His growth is normal, hovers around the 30th percentile mark for both height and weight. He started daycare a few weeks ago and he loves it. No one would know if we didn’t tell them. He hits al of his milestones. The doctors say he defies all odds. I say he is stronger than anyone knows. He is full of life and such an amazing person to be around.

 

In my darkest hour–when I don’t think things will be fine–I imagine him being 25 and living in NY (because he’s a model of course). I call him to find out if he has pooped for the day and he gets made at me for asking. I laugh at this and come back to reality. And I’m able to carry on. 

 

I hate this disease. It’s silent and it’s debilitating.

 

My heart goes out to any new parents going through this and I would be happy to help in any way I can.

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