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Saturday, May 21, 2011

Surrounded by geneticists

Besides his dad, Charlie has another geneticist in his life. Aside from his weekly blood tests, Charlie has a visit with the geneticist at the metabolic clinic every few months. His last one was this week. He doesn't seem to mind the check-ups too much as he (and his cheeks) get a lot of attention from the nurses.

He seems to know that he has a way with the ladies.

After being weighted and measured we wait. Charlie chews on his hands (his go-to form of self entertainment these days)

and plays with Dad.

Though if you make him wait too long he gets cranky.

After a long talk with the dietitian, and a check-up and discussion with the geneticist, we headed down the hall to the lab to get his weekly blood test.

All I have to say about this part is that there are good phlebotomists and bad ones. I absolutely adore the good ones and think the bad ones should stay the heck away from my child! This week we had a bad one. I won't even go into what we are paying to get his blood taken each week. Let us just say that the medical system needs an overhaul.

What we learned:
As of now (we won't know for certain until he is about two) it looks like Charlie has a medium to low tolerance for phenylalanine. If we were to guesstimate we would say that he is looking at about 6.5 grams of protein a day for the rest of his life.

Breast milk has different amounts of protein for different ages of the nursing baby. The amount of protein decreases steadily between birth and sixth months. We don't know what it does after that.

The important stuff:
Charlie is doing great. We are still working on getting his levels stable but we are close.

1 comment:

Becky said...

Wow! Charlie looks as kissable as ever, and I love his chewing on his hands face. He's adorable. I'll get to work making a dog tag that Charlie can wear around his wrist that says 'if you're not good at poking around, STAY OUTTA MY BUSINESS!' for all his phlebotomists. I'm glad he's getting closer to stable, and hurray for the possiblity of a 'medium' tolerance. Sheesh, only 6.5 grams a day?? Wow. He's a champ though. We love you guys!