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!


  1. That's a pretty big mistake to make! Sounded like a good visit for you overall :) It can be hard with all the different medical advice out there can't it? Our team recommends swimming as a great excercise for CFers, but not in indoor pools. I gues we can only do what we're told.

  2. Hi Krystal - I found your blog through a search for my daughter's CF gene mutations. Now it isn't the same but I am glad to meet you!