As some may know, our youngest has had to endure multiple health challenges over the last year with no end in sight.

At the age of 1, Alena was severely anemic and refusing to mobilize like other kids. She also had some severe reactions to food, which was diagnosed as possible FPIES. With the help of physical therapy, iron replacement, and feeding therapy, things seemed to be better.

Alena started limping in May of 2024. She never complained of pain, so I figured it was nothing, thinking a two-year-old would be able to tell us if something hurt. At a regular pediatrician appointment, our doctor said the limping was very abnormal and ordered some imaging. X-rays informed us that she had an unprovoked fracture of her tibia. She also had other abnormalities on her imaging that were puzzling. She continued to struggle with eating and was getting almost all of her calories from chocolate milk. Her tibia healed, and we continued to try to get her to eat.

In September of 2024, she started to limp again. This prompted multiple X-rays and sedated MRIs of her lower extremities. She also suddenly developed a trigger thumb, which required surgery to correct in January of 2025. We were referred to a rheumatologist who looked at her imaging and felt it represented scurvy. We finally got in to see GI, and they did an endoscopy and placed an NG tube. Four months of NG tube feeds and vitamin C replacement gave us an entirely different kid. She ran and played and had so much energy. Despite hours of feeding therapy, we made little progress in encouraging her to eat, so we had a G tube placed in July of 2025.

In September of 2025, we had our first trip to Colorado Children's with the hopes of trying to figure out why our otherwise developmentally normal three-year-old is G tube dependent. We left Colorado with more questions and plans to return for more procedures and specialist visits. We plan to return to Colorado Children's in November to see more specialists and hopefully get more answers as to what is going on.

This journey has been challenging both emotionally and financially. Insurance covers some of the costs, and we are very thankful to have insurance, but there are so many costs that are not covered, such as flights, rental cars, food, and even some of the procedures she has had to endure and will endure in the future. My time off from the hospital is on its way to running out, and then I will have no paid time off to take these trips and to care for her. Our only wish is to be able to do whatever we need to do in order for her to be healthy, and while we hope there is an answer out there, for now, this is an emotionally and financially draining journey.