NIH Wrap-Up and Another Hospital Admission

Our trip continued Thursday with clinical photography, a visit to Audiology to check his hearing, an appointment with a nutritionist to discuss his current needs and his post-Keto diet, and an attempt to check his vision with an ophthalmologist. (He screamed almost as hard at his eye exam as he did during his blood draws.... Continue Reading →

Days 2 & 3 at NIH

We started off the day yesterday with another blood draw – this one for something called a flow cytometry test they only process once a week. (We did a flow cytometry test when we went to Seattle Children’s Hospital, but the results came back inconclusive, so we’re hoping the NIH’s ability to process the blood... Continue Reading →

Day 1 at the NIH!

We arrived on Saturday after a pretty uneventful (in the best way) flight and checked into our housing for the week, which is called the Children’s Inn. The Children’s Inn is a place that’s offered to families with children participating in NIH research studies. They do their best to make it welcoming and cheery, and... Continue Reading →

NIH Clinical Study

This weekend, we leave for a week-long trip to the National Institutes of Health (NIH), a government entity responsible for biochemical and public health research. We were invited to take part in a clinical study they're conducting on Congenital Disorders of Glycosylation (CDGs). (And by invited, I mean we found out about the study and... Continue Reading →

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