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:

Trip to Maryland

Everything went well on our trip to the East Coast. Dorje was mainly happy throughout the trip, except a little spell in the middle where he coudln’t get comfortable.

We got in at about 5pm PST and came straight to the hotel. We hung out for a few minutes, then went to watch a movie and walk around an outdoor mall. It was really lovely. Dorje was enthralled with a huge waterfall. Unfortunately I forgot my camera so I couldn’t take a picture of him mesmerized by the waterfall.

Tommorrow we are going to check out the White House and a couple of nearby places before heading to Bethesda.

Sorry I didn’t take photos today, but I’ll try to take some tommorrow.

Funeral and Therapy on Horseback

This Saturday was a sad and happy day. We had my uncle’s funeral. It was difficult and painful for all of us, but at the same time we saw it as a celebration of a wonderful life and peaceful passing.

Dorje dressed up in his new suit that he got from his girlfriend Presley on his birthday:

Then we all went to my aunt’s to support her and my two cousins:

We also figured out an incentive to get Dorje to try walking…SODA. It’s not something we plan to give him again, but for this one time, we at least got to see what he can do when motivated:



Then Sunday he started his Hippotherapy program. It’s therapy on horses. He loved it! We are going to start taking him twice a week. That’s 12 hours of therapy a week but I think he can handle it.



Tommorrow (Labor Day) we’re going to Disney, so I’ll post more cute pictures soon!

Happy Labor Day everyone!