bandagedheartjourneys: Fall is in the Air

Well, we are officially back into the swing of the new school year. Lily has really taken to being a 1st grader very well. She loves going to school every day, and has made many great friends in her new class. I am always surprised at how well she does with the transitions to new surroundings and activities. I think these changes cause me more anxiety than they do her!
Next Thursday October 18, 2012 we make our first official visit to the Single Ventricle Survivorship (SVSP) program at CHOP. We completed all of the pre-testing back in April, but have not yet been seen by the physicians. For those of not aware of the SVSP, it is a clinic specifically targeted to our children living with single ventricle heart defects. As much research has shown, these defects are also associated with various outcomes on other systems of the body. Because of that, the program monitors these kids closely to hopefully pickup on any issues before they arise. It is really great because all of the specialists rotate to us! Lily will be seen by Cardiology, Gastroenterology, Endocrinology, Immunology, and also by Electrophysiology for her twice yearly pacemaker check and fine tuning. It is going to be a LONG and exhausting day for sure!
People often ask why we try to squeeze so many appointments into one hospital visit? I have found personally that it is less stressful for Lily to go and have everything done in one day, then to bring her back for multiple visits. She is very well-aware and understands that her heart is different from those of her friends and family. Having a heart that is "different" and being 6 also makes for a lot of questions for mommy and daddy, some of which I just don't have a good answer for? I try to make the visits as fun as possible by making it a "Lily and Mommy" day at CHOP with lunch and special treats included :) I think it is important to know how your child deals with stressful situations, and to manage those as best you can to help reduce their anxiety.
With that said, the thought of this visit next week is NOT reducing my anxiety at all! The sick nauseating feeling in the pit of my stomach has returned, and the dread of the unkown is something that I hate. Living the HLHS journey, I have come to understand that none of this is in our hands and I have to have some measure of trust in the medical professionals and faith in our amazing daughter that we will only get good news. More to come after our visit next week.......

Me and the girls apple picking in September