Wednesday, December 15, 2010

Second MCAD appointment

Today we had Cupcake's second appointment with the Genetic and Metabolic Center.  It's an ordeal to get there.  Mt Sinai is on the Upper East Side, and we are in Brooklyn, so it's quite a cab ride to get there.  We probably could take the subway, but with the cold front we are having, a two month old baby, and the stress that it gives me to go to a geneticist, it's better to just pay up.  That way we are all happy.

The appointment was the nicest one yet.  No one was worried, everything is fine, yet it was important to go.  The doctor wants Cupcake to go for a check-up every 2 -3 months during her first year.  They want to observe her and take blood samples to make sure things are going okay at a metabolic level.  It feels a bit frustrating to have to do this whole trek again, have more blood samples, and pay all this money, but in the grand scheme of how much babies cost, its fine.  At least we are on top of the situation.  And every time I begin to feel like this is a made-up disorder designed to make people pay lots for health treatment, I remind myself that babies and children have actually died from this.  It's a sobering thought.  And if maybe my headache of giving lots of blood samples means that they can study the disorder better, then good.  Hopefully, by the time she is in her 20's and thinking of having kids of her own, this "disorder" will be a thing of the past, like one of those allergies that feel so commonplace now.

So, some conclusion from the appointment:

- Cupcake is an adorably chubby baby, weighing an awesome 13 lbs.  But she's also really tall, so she's very proportional

- She's a champion eater, and gaining just right, so we shouldn't change a thing.  What we are doing regarding her feedings is working great.

- We still need to keep her on the 3 -4 hour feeding schedule, even though she's gaining weight so well.  Adding more time will have to do with her organs maturing, not with how heavy she is.  I was really hoping for a different answer.

- There is a possibility that Nate might actually have this too, considering that he was diagnosed as hypoglycemic when he was younger.  In fact, there are adults with MCAD who don't find out until their child gets diagnosed.  This doesn't mean that MCAD isn't serious, just that these adults were lucky and never had a major illness interfere with their feedings.  In fact, the doctor said that it would probably give us peace of mind if Nate tested positive, since it would show that one can lead a perfectly healthy life while being MCAD positive

- Her blood counts were all over the place last appointment because newborns fluctuate a lot.  It doesn't have to mean anything dramatic.  But yes, she definitely has MCAD.

- She's very healthy, and is hitting all her milestones with no problems.  Yay!!


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