Cystic Fibrosis

Cystic Fibrosis Foundation - this is the place to go for the most updated and accurate information regarding CF.

This is the post that changed our lives forever.  The day we received the news that Kyle has CF.  To be honest, the fear and sadness from this post came from the unknown.  While we have had time to digest it, understand it and live with it, there will always be an unknown.  What we have learned through this disease is  that everyone lives with the unknown and that is why each and every day with your child and the ones you love are so very precious.

We have been whole heartedly blessed with Kyle, disease or no disease.  Yes, we have to take additional steps that the normal family doesn't have to take in order to keep him healthy, but it's totally worth it.  And honestly, it's not that bad.

Current meds:

• Creon-6 ~ 4 pills taken at every meal and snack for his pancreatic insufficiency
• Albuterol/Nebulizer and The Vest airway clearance system ~ Given twice daily for 15 minutes
• AquADEK's - liquid multi-vitamin specifically designed for CF'ers
• Synagis ~ RSV anti-body shot given monthly until March 2011

How we keep his weight up:

• Butter added to just about everything
• Heavy whipping cream, strawberry syrup and Instant Carnation Breakfast added to his regular whole milk at every meal and snack (Carnation helps to firm up the poops, too) ;-)
• Dips like ranch dressing, mayo/ketchup, seasoned sour cream for his french fries and chicken nuggets.
• High calorie snacks like Toaster Strudels, Pop Tarts, cookies, ice cream, etc.

Despite the abnormalities that is his life, he is a normal little boy full of love, energy, intrigue, and is quite possibly the cutest and sweetest little boy I've ever known. :)  He's the love of our loves!