Highs & Lows

Hey everyone! It's been a crazy past 24 hours. Tracee graduated!! We were so proud and she looked so pretty. I can't believe she will be moving out on her own this summer?!! She is going to have so much fun. She is going to be an amazing nurse - or whatever else she might decide to change her major to.

Onto other news, Tuesday night our neurologist called me around 11pm. Both the MRI and the genetic testing results had come in. There wasn't anything the radiologist had to say except for what the doctors can already see by looking at Charlotte. However, the results of the genetic testing officially diagnosed Charlotte with a genetic syndrome called Beckwith Wiedemann Syndrome (the following site is very helpful http://www.beckwith-wiedemannsyndrome.org). This syndrome is the cause of many things, it's why she was premature, its why she was so big for her gestational age, it's why her left kidney is larger than her right and it's the explanation for all the little things doctors have noticed or commented on. She is doing fine and so are we. We now have to go to Emory to see a pediatric geneticist and he along with our pediatrician will begin a regular screening process for Charlotte that she will continue until she's in adolescence. Children with this syndrome have an increased chance of growing abdominal tumors - so they have to have regular ultrasounds to ensure nothing is growing. They already have our first ultrasound scheduled for next Wednesday at Scottish Rite and thankfully the pediatric geneticist at Emory is taking new patients so we have our first appointment with him Aug. 22nd. Other than that she will just be monitored over time and with time her physical characteristics will even out. All of us have to undergo genetic counseling. So this summer is going to be a lot of research and doctors visits!!

I appreciate everyone's prayers for us. I know this wasn't the outcome we had hoped for, but it's good that we know what we are dealing with. We are SO lucky to have a pediatrician, Dr. "May", that was observant and diligent enough to get to the bottom of Charlotte's little intricacies. She was just as disappointed yesterday on the phone as I think we were. It's really comforting to know we are walking through this process with such great doctors that really care about Charlotte. We are very blessed. Thank you again and keep praying for us.