Port Charlotte Great Strides walk 5/21/11

So we did the Port Charlotte Great Strides walk today!!! It was a short walk route, so we walked it twice :)

Along the way we met a nice comedic lady dressed as a crayon.... Steve told her he loved her "red" outfit... a little joke aimed at the whole red/green color blind thing.... she got a kick out of this, and entertained us with some on the spot poetry...

After the walk the kids had some fun in the bounce house... it was Gabby's first time in a bounce house and at first she wasn't all that sure about it... but she warmed up to it eventually

then the girls decided to have their faces painted.....

It was a much smaller event than Fort Myers, so we were only there a couple of hours, but it tuckered Kaitlyn out enough she slept for five hours once we got home.... she'd probably have slept longer, but I had to wake her for more breathing treatments. I am hoping once she kicks this pseudomonas she'll have some more energy, she's been feeling pretty crappy lately, and I would love for her to be able to have some fun without paying for it the rest of the day. It was a nice walk though, and a great cause, hopefully soon there will be a cure!!! All in all it was a great way to spend our Saturday :)

I kinda had a feeling, but I still wanna cry

So I just got off the phone with Kaitlyn's pulmonologist's office.... Kaitlyn has been really coughing a lot, and not able to clear her airways. She's been having really severe sore throat repeatedly on and off on and off.... I had a feeling that her culture was going to come back with something, but I was really hoping it wouldn't be pseudomonas again... no such luck. This is the second positive culture for pseudomonas, and she has to do cipro and tobi again.... this time I will have her do them in front of me, since she pulled one over on us last time... I can't take any chances. It scares me, because this can become mucoid in about 6 months, and this is the 2nd positive culture in the last 3 months, so I want it out of her now....  I am sick of seeing Kaitlyn feeling so crappy... anyone who knows her knows she is usually a bouncing off the walls bubbly kinda girl....but lately she has been getting so tired so quick, she doesn't even have the energy to keep on doing karate, and she absolutely loves karate.... It's so hard to reconcile the fact that she is sick, because to look at her you wouldn't know... and for her reality has finally set in... it breaks my heart to hear her say, "Mom, I just don't want to have to do all this anymore".... I know a lot of kids with CF grow up doing this from a much earlier age, but I wonder if that would have been easier, if she didn't know any other way.... to have this all thrown at you all of a sudden, it seems like her world (and ours) was just flipped upside down..... so now she is going to have to do another 28 days of tobi and she absolutely hates it because it makes her nauseous and she has to do it twice a day.... hopefully this will be the last round for awhile, I hate watching her suffer and just wish I could take it all away for her....