Growing up and giving back.

We had a really long but good day up at DHMC today. We left the house at 6:45 for a 9:15 appointment with development, followed by a panel discussion on life in the ICN, and finally a meet and greet with some past and current ICN families. Along the way we picked up the most recent set of MRI images.

The appointment with development was a yearly follow-up to track Tyler's progress. He really wowed them with his vocabulary and speech. If you take into account all of his hospital time he has had his fine and gross motor skills are in great shape. We walked away more sure the his vision issues are holding him back and that we need to re-address his food intake. After his last shunt revision his eyes still don't converge as they should and it is clearly impacting his fine motor skills. The problem with food is that he still gets most of his calories from the toddler formula.

They said Tyler as developed some great coping mechanisms on his own though. He uses his eyes to get the big picture and then does most of the work by touch. Putting pieces into a puzzle, for example, he'll place the piece within an inch and look away while he slides it into the hole. They were happy to see how much he can cope with, but concerned that the scope of his vision problem does not seem to be going away.

After lunch we moved on to the Parent Panel for the ICN Parents Council. Sharron has been working with the ICN Parent Council since about a year ago. They organize events and programs to help ICN families like the March Of Dimes walk. The event today was a panel of ICN veteran parents talking to a new crop of ICN nurses about how they interact with ICN parents and families, and what they can do to help make life in the ICN more bearable. Sharron has done one of these before, this was my first, I was also the only dad on the panel. I had expected it to get emotional, dredging up all those memories, but it turned out to be rather enjoyable. Lots of stories, many about positive events in the ICN, or how some less positive events we handled in thoughtful ways.

We got some good questions and feedback so hopefully it was worthwhile to everyone. Tyler was in his element for most of the session, walking around the large table full of nurses flirting his brains out. Finally we went up to the ICN to meet some of the families that have babies in the ICN now.