The Way It Is

Carson now has to go to the local pediatrician's office weekly to have his blood drawn to test his phe level. Babies grow so quickly the first year that weekly levels are necessary, because as they grow their needs change. Usually when he hits a growth spurt, his level bottoms out. I leave work early, usually every Friday, to go with Carson to the doctor. I know that Daddy could take him all by himself, but Mommy wants to be the one to hold him when they stick that little heel! I feel like I have to be there for him, and I do not want to miss anything he has to do. I don't want him to go without his Mommy! They currently stick his heel to draw the blood, then send it to the state lab, who relays the results to Carson's doctor at UAB. The nutritionist calls us with the results a couple of days later. If his level is out of the normal range, then they make adjustments to his formula. Carson's most recent phe level was 5.2. Normal is between 2 and 6, I think.

The formula we feed Carson is a mixture of regular baby formula and 2 medical formulas; one which contains protein without phe, and one that contains no protein at all. The recipe for this mixture is prescribed by the doctor at UAB and given to us by the nutritionist as Carson's needs change. I mix up the formula myself every day, either at night before bed or first thing when I get up in the morning. The recipe makes a 24-hour supply which we keep refridgerated in a measured container. Right now, Carson drinks 28 ounces of formula per day. The formula is all powdered and I measure it out on a gram scale, add water, and mix it with a whisk. We keep a notebook in which we write down what time and how much he eats with each bottle he gets. That way we can monitor how much we have given him and how much he needs. If he is still hungry after drinking all his 24-hour supply, we have to mix a bottle of the protein-free formula. When he starts to need more formula on a regular basis, we have to call the nutritionist and get a new recipe to make more formula. The powdered medical formula is shipped directly to our home each month, and thankfully our insurance does pay for it.

So that's the way it is now...the fun starts when he starts eating!