Today we took Ben to the University Hospital where he gets his specialty care. It’s located about an hour’s drive from our home. Ben had a follow-up visit with his geneticist whom we haven’t seen since his NICU stay. We are trying to enroll Ben in a CdLS clinical research study at CHOP (the Children’s Hospital of Philadelphia), and we needed some information sent there, as well as blood samples from Ben, Mark and myself. The actual visit with Ben’s geneticist was more of a social visit since the actual diagnosing was done more than a year ago. Ben weighed 12 lbs 11 oz.
Getting the blood sample was not at all easy or pleasant. Ben proved to be a very hard stick. We initially took him to the regular hospital outpatient lab. There two different phlebotomists tried a total of 3 times from his left arm with no success. We ended up having to come back a couple of hours later to have the pediatric IV/phlebotomy team try to draw the blood. They tried his right foot and were intially successful, but unfortunately the blood clotted in the syringe and was useless. In the end, after several more attempts, we were only able to get a little bit of blood, and I’m not sure it’s enough for what CHOP needs. Poor Ben was very sad, but he was a trooper and was actually easily consoled and back to his usual cheerful self this evening. Poor little guy. If we don’t have enough blood I’m not sure I can put him through that again.
We also went to the local Bass Pro store. What an impressive place that was! They had a huge fishtank full of giant catfish and trout, and we arrived just in time to see them being fed. We were looking to try out a couple backpack-kid-carriers for Ben, but they suprisingly had very few to choose from. I think we’ll have to order one online.
The older two were surprisingly well-behaved even though we spent hours in a very boring hospital setting. I suppose it helped that we packed their Gameboys.