Day 1 at the NIH

Yesterday we came to Bethesda and settled in to the Children’s Inn. It’s a great place to stay and they make it very easy for families to be here and feel comfortable.

Then we went out and explored a little, got on the subway and walked down Pennsylvania and all the way to the White House. It was closed so we couldn’t go in, but we got to check out the outside of it. We then walked to Union Station and had dinner there, tehn took the train back home.

Today was our first day of appointments. Most of them were pretty standard, mainly they were just gathering info from us. But we had a wonderful appointment with a physical therapist – I was really thrilled with her! She gave us some great ideas about what areas to work on with Dorje and what exercises should be priority. She was extremely knowledgeable and helpful about guiding us in the right direction. She also gave us a swimming vest for us to use in the pool with Dorje, and her department is going to try to help us get a bath chair.

Dorje was an angel the whole day, he was so happy to be hanging out with mommy and daddy all day. He really enjoyed himself and is having a blast (yes, even with all the medical appointments). Today he saw the Geneticist and her team, the Physiatrist and an OT, the Physical therapist, and he had an abdominal ultrasound. Everything checked out good and we’re glad to hear he doesn’t have problems in his other organs.

Here are some cute pics of our day:

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