NIH - 2 Weeks Later

As I was clearing pictures off Teddy's iPad from the trip to National Institutes of Health (NIH), I came across a picture that perfectly summarizes how we felt on the way back from NIH. They say a picture is worth a hundred words. This one is worth at least a thousand.

Those eyebrows on Teddy. My hair. My face.

Yeah, that about summarizes that plane ride home, the drive back from Milwaukee and the rest of that night. That week at NIH was exhausting on so many levels. The amount of information and testing was overwhelming. We still don't have all Teddy's results back, despite 250+ results populating when I accessed his online portal last week Friday. My comment to the service rep was, "It was a busy week." He said that it certainly was and thanked us for helping so much with research.

Nearly everyone was absolutely fantastic there, and so many shared that same appreciation for Teddy's participation in the research. In fact, the neurologist's report said something along the lines of, "Thank you for providing me the opportunity for this interesting consult."

Like I said, we're still waiting on some of the results, including ones like the EEG, sleep study and neurodevelopmental that we're extremely interested to see. We're slowly working to implement some of the suggestions. (Who knew it would be this freaking hard to figure out the passwords to install things on my iPad that I rarely use?)

We are tackling some of the easier ones, like offering water instead of apple juice most of the time. We have even managed to get Teddy to eat two full servings of broccoli. Thanks, Aunt Lindsay, for the recommendation of broccoli tots. That's more broccoli than Teddy has eaten since he was 2 when we could sneak it in his mouth and he lacked the ability to get it out of his mouth. Teddy hasn't complained about switching multi-vitamins from the gummy version to the chewable ones supplemented with iron. We've added more wheat flour to the batches of pancakes, along with wheat germ for extra nutrients. Then Teddy proceeded to eat 4 pancakes at breakfast this morning and served himself another as a snack. Yippee for extra whole grains and nutrients. Whoops to portion control.

We've scheduled an appointment with a physiatrist for the 22nd, so we'll see how that goes. I questioned scheduling the neurodevelopmental psychologist and decided to wait on pursuing that referral when the initial appointments, including several with 3 to 7 hours of testing, were described. Mentally, I just can't that quite yet after NIH. I figured we'll wait to see what the physiatrist says regarding the value of adding in that specialist to his treatment team.

There's an awful lot of recommendations, even minor ones, to consider and implement. It'll take time to work our way through them, but it's a good thing to have a list of ideas to consider and try to help Teddy be his best.