A chronicle of our trials and triumphs as we battle Hyper-IgE syndrome (Job's disease) with our baby boy Sam.

2:02 PM

Trip to NIH

I flew with Sam to Bethesda, MD to get him enrolled in a Hyper IgE Syndrome study. I found out that Sam did not get this syndrome from either of us, but since its a defect on one of his genes he has a 50/50 chance of passing in on to his children. There is no cure, but there is a lot of research going on for this immune deficiency and he will have a better quality of life than patients discovered even 10 years ago.
Sammy on his way to the National Institutes of Health

First shuttle ride like a Big Boy. He did great letting all the doctors take thourough looks at him. The coolest part was the 3D imaging they did of his head. They took photos with a large machine that had about 10 cameras. When the image was downloaded they could manipulate his head to see every angle! This is useful since the bones in his head might fuse early and they want to keep track of his progress.
I brought suckers to pacify him because I knew they would be taking plenty of blood. They had about 10 viles and it was making me crazy watching the lab techs fill them up. No less than 4 pokes and 45mins later did they finally get what they needed.
I took Sam to the Smithsonian Zoo & Musuem of Natural History. He basically spent the day in the stroller which was a precursur to how he would spend his days in Disney. Now I have to bribe him to get into a stroller or car seat! He doesn't know if he's agreeing to a few minutes or hours!
To view our trip to Florida visit our family blog at http://www.sfairbourne.net