Did you know that 1 in 100 babies in the U.S. are born with a congenital heart defect? CHD's are the leading cause of infant death, and the #1 birth defect of live infants. The cause of most congenital heart defects are unknown, yet funding for research vastly lags behind childhood cancer and other genetic diseases.

Has your child been diagnosed with l-tga? I would love to talk with you. Please enjoy my blog and email me if you would like to join a network of parents of children with l-tga and other CHD's.




























Thursday, September 20, 2018

6 months post DS

We have had a busy summer and the kids are already back at school and into the groove again. Some of the activities Nicholas took part in are:


Before camp



After camp
Boy Scout Camp: Nicholas spent 8 days at camp, only 12 weeks post surgery!! He got to do lots of fun activities and earned several merit badges. He had the time of his life just being a boy and enjoyed every minute of it. Mom was at home worriying almost the entire time, but was glad he had fun and welcomed him home with open arms!
Upper Blue Lakes with Sienna and Liberty
Camping: At the end of July, we went camping at one of our favorite spots, Upper Blue Lake, which is a secluded lake south of Lake Tahoe. We spent a day with Beau (brother), and a few days with the Reno Pierce's (cousins). We had a great time fishing, relaxing, swimming, and bike riding. 
First day of school
New school year:  School started at the beginning of August. Nicholas is in 6th grade. 6th grade!! I can't believe we have a middle schooler! Nicholas is involved in Leadership and has some advanced classes. He rides his bike to school with a posse of friends. We are super proud of him. 
Baseball
Baseball
Baseball: Fall Ball started about a month ago and Nicholas is playing. He hadn't played much since he had to quit mid-season during 4th grade and didn't play in 5th grade. We weren't really sure what he could do, considering he was in heart failure for almost a year, and now has been in recovery mode for the last 6 months. He has proven to be a strong player and looks so good out there. He still needs to practice to continue to build his strength and skills, but under the circumstances, he looks amazing. 
We have a cardiology appointment coming up next week and to be honest, I have a lot of anxiety about it. Although Nicholas looks great on the outside, I can never stop thinking about his inside. I will worry for his entire life, regardless of how hard I try not to think about it. His resting heart rate is climbing and currently beats about 100 beats per minute at rest. Hopefully the check up will put my mind at ease. I know Nick is supposed to have a treadmill stress test at some point to check his heart function during activity. I'll keep you posted!  
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