A More Productive Day

Today was productive but long -- very, very long. We started out at about 10am when we checked into the Pediatric Cardiology department for Max’s cardiac echo and appointment with the cardiac geneticist. Max is always so happy to see all his friends here. He told everyone, from the receptionist to the doctors, about what he’s been up to this last year. Of course this year’s big news was that he has been playing soccer. Dr. Dietz was happy to hear this news as exercise is important to Max’s muscle development. Max wasn’t as interested in the physiological benefits of exercise as he was with telling everyone about the many awards he has received this season. To hear Max talk you would have thought he took his team to the championship single handedly. If there is one thing that this kid doesn’t lack its ego!

On the cardiac front the news was generally positive. Max’s heart looks good, or to be more precise it looks the same as always so as they say in the business, “no news is good news.” In fact, the doctor told us he wasn’t worried about the heart valves at all -- we should be able to get a lot more mileage out of them. Thank God! The “interesting” news was that they have successfully engineered a mouse with the same gene mutation that Max has – we did get naming rights here and we’re happy to announce the arrival of “Maxi Mouse”.

Our second appointment was with Max’s GI doctor. He was pleased with Max’s growth and overall health. He did increase all of Max’s vitamin supplements which we expected due to how low his blood levels have been. The other news which we found just a little odd and a lot depressing was that as Max goes through the normal growth spurt of adolescence we should be prepared to put his feeding tube back in so that he can do overnight feeds. For us this seems like a huge step backwards, surgically placing a tube, hooking him up to a feeding pump every night, etc., etc. Been there done that and can’t imagine doing it again. Michele and I, although shell-shocked, have decided that Max is not the “typical” case so we are sure that we can avoid this miserable fate by diligently working on Max’s diet to insure he gets the increased calories he’ll need (up to 15,000 a day!).

All of this ended at about 7pm when I was finally able to feed the kids "lunch" as Max called it. He's still expecting to have dinner! Tomorrow should be quieter, all we have to get done is blood work and other labs. I also have to set up an abdominal ultrasound and reschedule with the surgeon so we’re almost at the finish line of this marathon. Yippeeeeeeee!