Day 3 at the NIH

We have mixed feelings about today’s appointment. We only saw one doctor, but we had to go to a different hospital so the visit took literally all morning. We saw a Neurodevelopmental Psychologist. She was wonderful; we spent 2 hours and 15 minutes and most of the time she was answering our questions.

She went over many aspects of Nathan’s life and treatment, including feeding, nutrition, discipline, routines, managing his therapies, playing, etc. She had ideas and thoughts on pretty much everything and was quite open and willing to share with us.

The main thing we found out is that mostly, we’ve been doing everything wrong. We thougth we were doing a great job with Nathan’s “program”, but we are making errors left and right just because we didnt’ know any better. For example, he is receiving lots of therapy, but the programs are disorganized and not working cohesively. We haven’t been setting up clear routines. We mix languages with him. We haven’t been giving him enough “alone” and “independent” time. Those are justa few of the things that we are doing wrong.

So she suggested a pretty intense change in how we care for him. She reccommended we lay back on feeding him solids. We need to establish a clear bedtime routine and teach him to fall asleep on his own. We shouldn’t rock him to sleep. We should manage all therapies with a monthly therapy book in which all therapists write in what they worked on and what we should work on in the next few days. Then we can write in our own notes and everyone can see the therapy book. We should focus on teaching him Receptive Language – that needs to be our main goal. Mainly we should focus on functional skills so he can learn to interact with his environment. Those are just a few examples. I have many more notes, but I just wanted to capture the gist of what she said.

We were overwhelmed at the amout of work we have ahead of us. And although she was very kind, the visit made it glaringly obvious just how handicapped Dorje is, and how many needs he has. It was very disheartening. Mostly we think of him as progressing well…but this just shows how far behind he really is.

Of course Owen and I don’t really care, but we both did have that sort of “kicked in the stomach” feeling when we walked out of the appointment.

We came back to the NIH prepared to meet with the Neurologist, but he didn’t show up.

So now the boys are napping so we can go to the Smithsonian as it’s our last night here in DC.

Here are some pics from yesterday:

Exploring Dada’s face (notice how he’s opening and closing and controlling his hand):

Here he is holding up his head for the second time ever! In the past, if you lifted him, his head would lag back. Now he can bring it up when his trunk is leaning back or as you bring him from lying to sitting. Yay Nate!

And here he is playing the piano for the first time ever!

Here are a few pics:

On quadruped with OT