Fiona update! My apologies for not getting this out here sooner as I know many of you have continued to keep Fiona in your thoughts and prayers and have been wondering about how she had been doing. Thank you.
Fiona has been symptom free since returning home! Her weight has continued to trend upwards and just last week at her 6 month appointment (how is this possible?!?!) we celebrated a jump from her being in the 4th percentile for weight to the 17th percentile for weight. She has been able to begin her journey on solid foods which she tolerates well. As a result of her status/progress her care team has given the okay to put off a previously scheduled follow up endoscopy.
Fiona has one last appointment to attend, to check her heart. There was one marker that came back on her genetic testing that showed that she may be at risk for a form of heart disease. This obviously is unrelated to her GI issues, and likely is not even a cause for concern but since it showed up they suggested following up just to make sure all is good.
And that’s all.....hopefully this is the end of these journal entries and the end of Fiona’s medical journey. Thank you to all of you, a million times over.
