Thursday, July 9, 2009


After 2 hours at the doctor. She was sleepy.

Fireworks yeah!!

Diggin into the birthday cake!

Her and Doctor Kanga and nurse Barbra.

So yesterday was Kyla's doctors appointment. She now weighs 16.26 lbs!!! She is my little chunky monkey;o) Although her pulmonary visits typically last 2 hours, it is always a great visit and I always leave feeling positive. They shared with us the news that a drug that is in the final stages of FDA approval. It is supposed to help with the production process of the salt glands. Since Kyla's don't work properly this medicine will help her to absorb the salt which would draw in water to her cells. Water is what is missing in her cells, and the lack of the H2O is why her body can't break down the mucus like a normal person's would. It is all very complicated but the more I hear certain terms and research the more I learn and understand exactly what the doctors are talking about. At any rate it is great news and I just know a cure is right around the corner.
They changed the dosage of her enzymes so instead of having to take 4 pills per feeding she now only has to take two, same medicine just stronger. They said her lungs sound clear, but they are going to put her on a medicine, I believe it's called Pulmizine. It's purpose is to break down and thin out the mucus that will collect in her lungs eventually. Although she may not need it now she will down the road and it won't hurt her, so it's more preventative.
The doctors gave the go ahead on starting baby foods!!! So watch out sweet potatoes and cereal!! I'm not sure if they gave the go ahead on icing from her birthday cake, but on Friday we celebrated her 6 month birthday. This may seem silly but it is important to me because not so long ago a baby born with CF rarely lived past 6 months old. It's a milestone in my book for sure ;o)
She is doing great and her physicians couldn't be happier with her progress. All of this just reassures me that I am doing something right and that we are gonna be okay.

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