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.

Wednesday, July 1, 2009

Rough Day...

I'm just going to start fresh with a real post....
Today was a rough day. Yesterday my mother proceeded to tell me a story about a little girl who has been living with CF for 16 years and had a pancrease and liver transplant recently. Her organs have been damaged by the disease over the years of medications and the operation was the best solution for her. Although I see the positive in this story it is so hard for me to think about my daughter at age 16 having major surgery to replace useless organs. It makes me think of pain and hardship that no child should have to go through. It makes me think about when I was 16 what I was doing, and it definatly wasn't worrying about if my organs were going to fail me.
I have to be honest with myself, I am still in a state of absolute denial. I have yet to read any sort of in depth information online or try to find any forums or chat rooms for support , I have sort of just put the actual fact that Kyla has Cystic Fibrosis to the back of my mind and I don't think about it in long term....It is starting to hit me that I have to think long term and I have to be aware of the potential threats this disease poses for my child.
It's just so sister put it the best way , this was when I first told her of the diagnoses, she said "Emily you have the right to mourn, mourn the loss of what your childs life could have been without the illness." I suppose she is right but for some reason I haven't really done that. Crying isn't always mourning. I never stopped believing in my heart that Kyla is going to be fine and she isn't going to have all the symptoms that the other kids with CF have. This is not reality.
So today for the first time I got online and I read and read and read, I got nothing done because I read for so long. I read about the history of CF. I read blogs and websites and personal experienes of people of all ages living with the disease. I noticed a lot of people who died between the ages of 25 and's awful and I decided that was enough reading for the day except for one last blog from a man who is 31 living with CF. He was diagnosed when he was born, just like Kyla. He went to college and he is married and he takes the enzymes, and vitamins and does the breathing treatments. He has only been hospitalized once. All of this was making me somewhat more optimistic, and then recently he posted that he and his wife had their first biological child, this past August. A little boy,who is as healthy as can be. And it truely made me realize that Kyla has a life to live. And she has opportunity do do everything I did and more. And the simple thought that one day my baby could have a baby of her own, as normal as that may be for other people,the thought that she will have a chance to experience all lifes wonderful blessings, well it's inspiring to me because I want her to know all the joy that a child brings you in life. I want her to know that no matter if a baby is born perfectly healthy or with a life threatening illness, they are still a blessing from God and are the greatest gift a person can recieve. I love my child more than anything, and I am looking forward to watching her live a long healthy happy life and I hope others are doing the same with their children ;o)