Sweet Savannah Mae: Genetic Appointments Suck...

Dear Savannah,

This week, your tummy has been bothering you. You can't win. I feel that either your tummy is distended and hard or you are requiring multiple diaper changes. I changed you seven times on Monday. Tonight, I changed you four and Daddy changed you once. I was terrified to take a tubby with you tonight, however, nothing to report.

Sometimes, it is really hard to know what is going on. You don't seem to express too much discomfort when you are feeling a little yucky. It makes my mind go to all kinds of places. I wish I knew the answers.

Speaking of answers, yesterday, I scheduled an appointment with a geneticist. We have had testing done and even a micro-array, but we still don't have any answers. The appointment is still a few months away, however, I feel that it is important if it can help you. For example, since you were born, your skin tone has been very mottled. I worry that this could be something more, perhaps a heart issue, or it could just be you which is perfectly fine. I just want to be able to help if I can. I would like to rule things out.

This will be our forth geneticist. Personality clashes and a mom who knows what she wants = new doctor. The main problem has been that you are a "subject" to them. You are my precious daughter whom I love more than anything on the planet and its hard to have them look you over and point out things I love about you. I have also been given "papers" about potential things they wanted to test. One doctor handed papers to me and in the first paragraph was a life expectancy. REALLY? This was just something they wanted to test you for, not a diagnosis, and then the appointment ended. I never went back. Our third geneticist was at Boston Children's. I liked him. He seemed more compassionate and I thought he would be the one to help us figure out our little mystery. I was completely disappointed that I have attempted at least five calls to take the next steps in testing and I have never heard back. I gave up and felt that he didn't deserve to know you. Anyhow, come your next appointment, I hope I like the doctor. She comes from the midwest so I hope she is friendly.

This past Monday, you went on your first field trip. I joined in on the fun. It was a lot of fun. We went to the New England Aquarium. You enjoyed the bright blue lights and the fish tanks. You also really enjoyed the bumpy bus ride. You touched a starfish, gross, I did too. You also touched a turtle. They were very accommodating to you and your friends who were in the wheelchairs. They put the starfish and turtle into a separate container and brought them over for you to explore. Your teachers are all very nice.