Day 2 at the NIH

Things keep getting better and better. We are blown away by the quality of the doctors, their knowledge, how caring and informative they are. We haven’t even ehard ONCE any of the negative comments and prognosis. They are all really happy with his progress and very encouraging.

And, imagine this – the rehabilitation department is going to give Nathan a bath chair!! They just offered to do that for us, and are going to pay for it out of their department funding. It’s great, as we were in desperate need of a bath chair and they are sooo expensive.

Today we saw a genetic opthalmologist, speech pathologist, and an occupational therapist. The opthalmologist was blown away with what he saw. He confirmed that another part of Dorje’s brain took over for vision, as he is definitely missing the occipital cortex. He was impressed with his vision and said we’re doing great by having vision therapy to stimulate eye hand coordination.

Then we saw a speech pathologist and it was a very revealing experience. We’ve long suspected Dorje has issues with swallowing and muscle tone with his face muscles. She confirmed that he hasn’t lost his primitive tongue thrust, so when we try to give him fluids and solid foods, he pushes it out with his tongue. He also has trouble coordinating chewing and swallowing and the muscles in his face arent’ very strong. Additionally, he can’t move his tongue left and right or keep it down at the bottom of his mouth, causing further problems. She gave us some Nosey cups and told us to thicken his fluids (water and juice) so he can drink better. She also told us to keep pureing his food so he can have a better time at chewing it, and to take it easy with introducing chunky solids. It was hard to hear all that, as it confirms he will ahve issues with speech, but good to have facts about what’s going on and information on how to manage the situation. She also reccommended speech therapy for feeding every week. Another therapy to add to the list – yay!

Finally, we saw an occupational therapist. She gave us the great news about the bath chair, then showed us some exercises that we can do with him. She was incredibly knowledgeable and I am happy with the exercises she suggested. I’ll post a couple of pics here showing what we need to do with him.

So that was our day. In the evening, Owen and I got free massages as part of the complimentary services and we really needed them! It was a long day with back to back appointments. We didn’t get to explored DC but we got to learn how to help Dorje more and we are happy.

I guess it’s the rule of giving. Owen and I decided to come to this visit to help other children with HPE. We figured that by offering Nate as a test subject, it would help them learn more about the genetics of HPE, and thus, hopefully, how to cure it in the future. We didn’t expect to get ANYTHING out of it that would help Nathan. We have been sooo happy to get so much out of it, to have met such kind, intelligent, supportive doctors and therapists. It’s been a refreshing and encouraging experience so far.

Well I dont’ have time to process pictures or videos but wanted to share the update.

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