A little piece of heaven

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

Lifting his head from lying to sitting

Playing the piano for the first time ever!

At Children’s Hospital today where we saw the Neurodevelopmental Psychologist:

I just wanted to say that on Sunday, Sept 9th, while we were walking to the White House, Dorje said “Mama” twice!!!

It was the most exhilarating feeling to finally hear him say mama.

Of course he hasnt’ said it since, but I know he can and will again.

Just wanted to share.

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.