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 My Life with Cystic Fibrosis       Finally one day, a doctor told my Mom and Dad that I have Cystic Fibrosis. Phew, was I relieved! I started to get some enzymes, and special vitamins called ADEK, and I sure started to feel a lot better! Everybody cried a lot after the doctor told them about my CF, but I wanted them to know I felt great now, and it's okay. Mom, Dad, and Grammy Marge help me with my postural drainage. Grammy Marge takes care of Nick and I while Mom and Dad work. I must admit I did put up quite a fuss at first with the PD, but it was just to see their reaction! Well, they kept right on doing it, and I have to admit I felt pretty good afterward.  Look at me! I finally got this sitting up thing figured out. See, if I hold on to my leg I can stay balanced for quite a while. My muscles are finally getting stronger now because all the food I eat is finally doing some good thanks to the enzymes. 
Now this takes some effort! I tried just moving around on my belly, but this works so much better! 
I started walking at about 10 months old. What power!! This is me on my first birthday. Love my new hairstyle! 
Chocolate!! Wow, this stuff is great! It seems that my diet must have high amounts of fat and protein, to keep me healthy. Don't know about that protein part, but I sure do like this high fat thing...chocolate, ice cream, milk shakes! Of course I always take my enzymes before I eat any of these things, otherwise I would feel kind of sick. I am now taking two capsules of enzymes with my meals and bottles. I started out with only half a capsule when I was "little". I weigh about 21 pounds now, and the amount of enzymes I take depends on how much I weigh. Things were going along just fine since I got on my medications. I had my flu shot when it was time, and so did everyone else in the family! The things they all go through for me! I went through my whole first year without any colds or problems, then I started to have some trouble breathing. Poor Mom, she went into another panic! Well, Mom, Dad and I spent a couple of days in the hospital. Seems I had my first attack of asthma. Oh well, a few "up draught" treatments, and I was doing much better, and Mom calmed down. We now have a nebulizer at my house. It's a great little machine that we can carry around, and I can get my breathing treatments with it. They put the medicine in this little thing, and the nebulizer turns it into a mist that I can breathe. At first I got Albuterol, both in the hospital, and then at home, but it wasn't really helping much. That stuff in my lungs is just too heavy I guess. Then the doctor gave Mom some steroid type medicine, and that did the trick in only a couple of days! The nebulizer is really easy to use, even Nicky can give me my treatments. 
Here's the whole family on my first birthday. I think we're a good looking group! 
This is me and my GreatUncle Eddy on Christmas Eve, 1998. He went to Heaven to be an Angel in March of 1999. He wasn't just my GreatUncle, he was a Great Uncle! I am now about 16 months old, and things are going okay for me again. Haven't needed any more nebulizer treatments lately. Mom, Dad and Gram still faithfully do my PD several times a day. Did you ever try to sing upside down? Try it, it's fun!! We always sing when I get my postural drainage treatments, it's a great time to learn new songs. I almost have that "ABC" song figured out, but my favorite is still "Bingo", you know, about the farmer that had a dog? Grammy thinks that she will update this every six months or so as I grow, or more often if things change. Come back every once in a while to see what's new with me, okay? April 23, 1999 Well, I'm back on my nebulizer again, another bout with the asthma. The doctors are thinking I have a bacterial infection this time too, so I have my Albuterol in the nebulizer, Pediapred liquid, which is a steroid, and now, Amoxicillin. With all this stuff in me something should start to work pretty soon! August 1999  Look at me now! I can do MY OWN nebulizer treatments!! It hasn't been too bad, but the pollen in the air makes me kind of "wheezy" right now. If I have a treatment before bed, I can usually get a good night's sleep.  Still enjoying my ice cream!  This is my new sweater and hat that Grammie Lily made for me.  This is me on Christmas Eve, 1999 Come and see what's new with me, Now that I'm Two. If you would like to see some other things for and about kids with CF, you should go to "Dr. Bob's" place. He understands about our disease, because he has CF too. He's not a real doctor, but he's been dealing with our disease for so long, he could be! He isn't feeling that great right now, so maybe you would just like to send him a smile :) Cystic Fibrosis Information and Support 
last updated December 28, 1999 |
