Thursday, February 24, 2011

Another Day spent Driving and Waiting....

So today was the monthly clinic visit and it was a GREAT one other than the driving and waiting. First things first, apparently a nurse who worked at the clinic when we first started would always enter data and mess up things probably because she did not double check herself  and Keagan's doctor fired her I guess based on the comment he made today. So on the form I bring home from every visit had a mistake on it and that mistake was the wrong mutation combo for Keagan. Keagan is a DOUBLE DELTA F508'er so he DOES NOT  have the 621+1G>T mutation. I am kind of relieved from this since there is no information on how severe CF can be with the 621+1G>T mutation! And unfortunately, we did not get to see the allergist today to figure out whether or not he has a milk allergy but we will see her when we go back on March 16th! So clinic details....

    - nothing!!! even with a runny nose and cough (I know it can turn into something for you negative thinkers)

    - 28 7/8" long....almost an inch in a month
    - 21 lbs!!!!!! This is a 2.5 lb weight gain in a month!
    - continue getting him FAT lol
    - in the 50th-75th percentile for weight for length ratio!!!!

What did I learn today?
     - anything with a strong scent will irritate his airways
     - pools, rivers, and lakes are all ok...YES!!!!
     - will prob start pediasure when he is ONE
     - and in the summer will probably start giving him gatorade with added salt when we spend the day outside

GOAL: When Keagan begins walking/running, we will spend an hour-two hours running and playing outside to begin his active lifestyle to keep him healthy!

Wednesday, February 23, 2011

CF and its Drugs

So news juat broke that a new medicine is going for FDA approval!! The medicine right now is VX-770 but I am thinking that it will prob get changed to something different. This medicine is only for people with certain CF mutations, so Keagan will not benefit from this medicine. VX-770 will only benefit 4% of the people who have CF. This medication will help improve overall health of the CF patients with the mutations Delta F508 and G551D. The research company who developed this med has more in the works to help other CF'ers with other mutations. I know that one day the awesome researchers will have something to make Keagan breathe easier, gain weight easier, and taste less salty! But unfortunately, CF research is not government funded so unless people like you donate money that one day may never come for Keagan or the 30,000 other people in the U.S and there are more worldwide. So if you haven't already helped to make this easier by donating to the CFF through someone's Grreat Strides team page or the CFF directly then please do so. One day we will together make CF stand for CURE FOUND! Thank you to everyone who already supports the CFF! If you would like to help Keagan's Great Strides team then you may do one of the following:

1) go to and doante
2) order a team shirt $15 for adults and $10 for youth/toddler e-mail me
3) my mom is selling CF bracelets and keychains e-mail he

or you can donate directly to the foundation at