Salem is due to see her pediatric cardiologist next week. She's still on her beta blocker and still has some minor issues. He mentioned a year ago putting her in a holter monitor. This might be a good time for that before school starts.
She is being included in the Harvard Gene Study for Noonan Syndrome. It probably won't matter at all to treatment now but I am hoping by the time she is an adult and considering having children of her own that it will have given more information to the researchers. Right now several genes have been isolated that cause NS. But not all kids have all the genes. The one she has just been tested for is the PTNP11. There are 3 others I believe.
Her geneticist visit is the first week of August. It's more of a clinical visit and usually very short. Please pray Salem does well in both visits. Salem is amazing but she's at an age where her questions about why she has NS and why she has to go to the Dr. and speech and PT and take medicine are harder to answer. I want to make sure and answer well enough to give her what she needs to know but not answer so vague that she knows I am not telling her something or too much and overwhelm her. What a tightrope walk.
6 years ago