Friday, September 12, 2014

Family Update - Isaac

Isaac has become quite the big brother to Elliot. He helps to keep him safe while also being a bit rough at times. I can't believe it but he just started first grade! He's doing really good at reading and is starting to get into math. Right now he's really into legos, especially Star Wars legos. And he's gotten very good at building things on his own. Now that Andrew is working on this side of the lake, closer to Isaac's school, he has been able to start an after school activity - KARATE! He's so excited. It seems like a really good program and is helping with focus and discipline.He's also recently lost two of his teeth, which he was really excited about. Isaac makes us laugh daily. It's funny how observant he is.

On Fourth of July weekend, Isaac had yet another hypoglycemic episode while we were visiting with Tat and Omi. He went to sleep that Saturday night without taking his cornstarch and the next morning, he was seizing. Once again, we found ourselves in an ambulance. This time, spending the night for observation. He followed up with an endocrinologist and nothing was found. Not sure if I shared this but last fall he was diagnosed with a genetic disorder of PTEN sequencing. It's called Bannayan-Riley-Ruvalcaba syndrome. Say that 5 times fast :). In a nutshell, it puts him at risk for noncancerous tumors called hamartomas. He has to have a skin check by a dermatologist and a thyroid ultrasound each year. We're planning on the skin check in October and the ultrasound checked out ok. According to the geneticist, the hypoglycemia should NOT be linked to this disorder. He did find ONE research article that may support a connection. We enrolled Isaac into a study for another cause of the hypoglycemia.

Right now, he still has a diagnosis of exclusion - ketotic hypoglycemia.

Here are some pics from Isaac over time since  my last post. We're gearing up for his 6th birthday party in a few weeks!

 Playing in the "snow" during the big freeze

 Mother's Day (He insisted on wearing a tie for the "fancy" day)

First day of First Grade:

No comments: