Sunday, February 23, 2014

CHD Awareness & our toddler's heart

CHD Awareness week was February 7-14, and we took the photo of James showing his scar (below) as a part of the campaign to "Rock Your Scar". It's healing up nicely - so nicely it barely even shows in the picture! I also posted here a photo essay of our journey dealing with a CHD and encouraging continued awareness, research, and funding.

In more usual news, we followed up with the nutritionist recently and found that James has lost a bit of weight. He's still about 19.5 pounds, a fairly static weight for some months now, so we're moving to a new diet of a special high-calorie formula. He's making consistent improvement with handling solid food, but for the sake of calories, we can't move forward with weaning him from bottles... which is very frustrating. We'd love to reach the point where we can stop washing bottles and feed him normal meals alongside us.

Therapies are going well, and the other photo below shows his first rock climbing attempt! Here he could climb in an approved environment, as opposed to the furniture at home he gets into all sorts of trouble with. He's also got a new 2T winter coat - officially into toddler clothes - because despite his low weight, he is a normal-to-tall height.

Last but not least, some bigger updates: #1, we learned that James cannot fly until after surgery #3 unless he gets equipped with an oxygen tank... so basically, no flying. And #2, surgery 3 is on the calendar. This will be the Fontan, and is the second part of the Glenn-Fontan set of surgeries. It will complete what the Glenn started last year. We are looking at surgery in late spring 2015, shortly before his 3rd birthday.