Gracie awoke in a great mood and was a busy girl this morning. She only had one spasm the first hour and a half which gave me great hope. We usually see quite a few in the morning, but they did continue to increase throughout the day and our total was around 25. I will talk with Gracie's neurologist tomorrow to see what Plan C is.
Our first appointment of the day was with a pediatric cardiologist and we have now added him to our ongoing medical team. He was awesome and I continue to feel incredibly blessed by the great team of medical professionals that surround Gracie. The biggest concern with Gracie's heart is that she has a slightly thickened heart valve which is leaking. This needs to be watched closely and at some point may require a valve replacement or it may continue to be fine forever. The cardiologist did mention that this is quite a common finding in "syndrome kids". We will have another echocardiogram in 6 months to see how it is doing.
This appointment was at St. Marys Hospital, so after we were done Gracie and I went to the visitor cafeteria and shared a piece of Jello cake. YUM!!!! It was a treat for both of us. After a quick nap, Gracie's physical therapist came to our house but Gracie just wasn't in a very good mood to do much. While Sandy was here, the UPS truck pulled up and delivered Gracie's helmet, so she checked that out for size and it fits very well.
After a quick snack, it was back to the Clinic for a blood pressure check and a weight check. We are just under 31 pounds and her blood pressure was good. After all of that activity, Gracie was more than ready for bed tonight. Come to think of it, so am I!
Love,
Lisa, Jeff, and Gracie
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