Our unexpected but blessed EA/TEF journey. That’s how guest blogger Kristen Horton views raising her son with EA/TEF, and most parents raising kids with this birth condition would agree. Kristen first wrote about her family’s journey before her son Christopher was a year old. A year later, she was back with an update and now she’s here to tell us how their family is negotiating his third year of life.

A New Year

Our unexpected but blessed EA/TEF journey has been amazing really. I cannot believe this is the third year writing about our story and journey we have been on since my son, Christopher, was diagnosed with Esophageal Atresia with TEF. It’s been a wild ride with more ups than downs, which is what I think most people would prefer. Thankfully, there haven’t been too many downs this past year, but there has been lots of change and flux. Christopher is now a thriving and active 2 year old boy, we ran in six 5k races together, and he will be a big brother in the spring of 2020.

A New Diet

Last year around this time, we had just dealt with some “stuckies.” A swallow study was performed to be certain Christopher’s esophagus was still wide enough and whether there was need for a dilation. Thankfully, there was no need for any more surgeries, but he did get put onto a “pureed food diet” for day care purposes. At our final appointment with our surgeon in June of 2019 before we moved, the doctor gave the blessing for Christopher to go a year between surgeon visits. Our little boy is able to eat pretty much everything without the need to puree it. The main piece of direction from the surgeon came for us to monitor him closely while eating to ensure he chews properly and drinks regularly during meal times at home and daycare.

A New Base, A New Daycare

Being a military family, we frequently move from on base to another. We happened to move in July 2019 and had to essentially start over with new doctors, explain things to new daycare teachers, and adjust to a new location. This part of our year came with the most challenges to overcome. Christopher has been in three different classrooms since July and had three separate sets of teacher. Needless to say, there has been a ton of explaining what is and is not normal for him, what to look out for, and the fact that he can’t have whole milk. He’s been in his toddler room since September, so at least there has been more stability.  But when he had his first “stuckie” at daycare, as well as subsequent ones that arose when he was battling congestion, trying to explain to them how to deal with it was rather stressful. But we were able to get through it, and it feels they understand better now. As an EA/TEF parent, it seems you are always going to saying “This is normal,” “That will happen at times,” and “This is when you should be concerned.”

A New Addition

Our final challenge of this past year has been related to our newest addition to the family who will arrive this spring. While EA/TEF is not a genetic-driven defect, we have seen a genetic counselor, been closely monitored, and been prescribed more medications than during my last pregnancy.  Being a high-risk pregnancy has been a challenge, especially with a new job, an active toddler, and a dual military lifestyle where travel is inevitable. However, we are hopeful and optimistic that we can handle anything with the new baby considering our unexpected but blessed EA/TEF journey!

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