update

Wow it has been so long since I last posted any info about Drew. I guess that is a good thing that we have not had any major news to report. He is doing well. He continues to have the purple/blue hands, lips and feet during the winter. We can't wait for Spring and then this is not as often.
We have started to realize that he wants to do everything that everyone else does now, but this is not realistic for him. He tries very hard to keep up with the other kids ( his brother especially) but he gets blue easy and winded. This is difficult for him but more difficult for us as his parents. This Summer is going to be very hard to keep him less active. We will talk to Dr. Orie about this at our next appointment.