On Wednesday Lindsay and I will take Ella to see Dr. Lester, her pulmonologist (University of Chicago Medical Center), for the first time.
Of course, the feelings about this appointment are mixed.
I am anxious to see what the doctor will say about Ella's current ability to breathe. We aren't seeing anything unusual yet but we do know that the subtle signs of impending breathing problems can be hard to detect by parents/caregivers in the early stages.
I am terrified because I know that respiratory health is a critical component to Ella's survival. It terrifies me, I think, because we are now entering into another aspect of SMA...a new realm. This is where the real work in keeping her healthy comes into play. The responsibility is tremendous.
We have been in contact with several families that also have kids with SMA. We know that breathing assistance equipment, cough assist equipment, machines that monitor breathing, etc. will all be a part of our life. It is intimidating to say the least. It seems as though we get past one hurdle and there are a hundred more before us...
The appointment will hold many answers for us. The pulmonologist will be the most important part of Ella's medical team. I'm anxious to begin this all-important relationship with Dr. Lester.
We enter this week holding on to one another...for it's within each other that we find our strength...in each other and in those that surround us.
