A Date With Dr. Longo

On Monday Madisyn had her first real appointment for a checkup on her MCADD. We had to go up to Primary Childrens Medical Center to meet with Doctor Longo, whom I found out is from Italy not Germany as I had originally guessed. Things went pretty well. We met with 7 different doctors ranging from specialists to dietitians and geneticists. They all bombarded us with information but because I've studied up on this condition I believe I retained most of it. They measured her and weighed her (23 1/4" long and 11 lb 9 oz), she's in the 30th percentile for her age, so things are going well. I had to keep a chart for the previous three days of everything she ate, that was fairly easy since all she eats is formula; but I can see that it is going to get much harder as she grows.

They wanted to do DNA testing to see which of the two types of MCADD she has. They figure that it is the 'Classic' form which also happens to be the most severe. They treat both forms the same they just will see Madisyn more often if this diagnosis is confirmed. They asked me if she'd ever had her blood drawn before. I said "Well she's had her heel poked for blood", that is so NOT what they meant. They actually have to hold her arm down and poke her with a needle then suck out her blood with a syringe. The phlebotomist was great, he was saying sweet things about how beautiful she was, he asked Josh if he had a gun to fight off the boys when she grows up. All those things were made to keep our minds off the fact that they were about to hurt our baby; but it was still nice of him to say. He really took his time trying to find the largest vein in either arm, he said it was about the size of angel hair spaghetti. They took out three large viles of blood, I honestly wondered if she had any left. She fell asleep almost immediately, we kept checking her to make sure she was still breathing. I drove home with my hand on her chest.

Needless to say, we don't have to go back until October unless she has an "episode". They increased the amount of supplement she's taking and told us that as she grows we can increase it ourselves. WHAT? I am not comfortable increasing her dosage without a doctor telling me it's fine, so we will just let her pediatrition do it. They will have to take a blood sample everytime she goes in (I can just see how that is going to go when she's 2). I've already decided that Josh gets to be the one to hold her down, it was painful enough just listening to her cry, I can't imagine when she can talk. However, being at that hospital with children who have far worse conditions than Madisyn made me so grateful for the blessings I have. So what if she has to take a supplement, so what if she has to have a special diet (at least we will all be thin, once we start following her diet, it's not hard just different), at least she's not fighting something horrid like cancer. To me she is absolutly perfect just the way that she is.