Addy had a cardiology appointment today and overall it went well. Addys aortic root dilation is holding stable. It will never shrink but it hasn’t grown since February!!! We are so relieved. While we realize at the next appointment things could change…. For now we are happy!
Her ascending aorta is slightly enlarged, however cardio is not currently concerned.
Next cardiology appointment is June! Fingers crossed that it will still be stable in June.
The cardiologist believes the fatigue is coming from the mito piece or from the decreased metabolic / pulmonary function, but we will have more answers about that after Fridays testing. The fatigue is such an issue right now across so many aspects of her life.
We discussed her chest wall repair with the cardiologist and at least talked through a few things…. But it’s still a big surgery with so many concerns. But in front of addyson we will be strong and confident.
Beaming with hope 