They Grow Too Fast: Flash Me Friday

Chehayla has a "harvest party" today. They were able to dress up as farmers or a farm animal. She was a horse. She was much happier than she looks in the picture.

Chehayla's General Health

We had a good run at being healthy, I am greatful for that time. Since her last clean out in August of 2010' she hadnt had any coughing. That was a first cause b4 that even in her "well times" she still coughed here & there. About the second week of December we all started getting colds.So did Chehayla & I let it go cause I wanted to give it a chance to pass. Instead its progressing..of course. The past few days she sounded worse & worse , & yesterday I called our CF nurse. Her cough is super thick & deep. So she will be on a second oral antibiotic for about 10 days. If it dosn't help I imagine they will want to do another clean out. But its not a scarry thing anymore....I mean, as parents we now see it as a chance to get healthy & gain a little weight. Im sure for her it is still a little scary but each time she get braver & braver. Last time she didnt even cry when they gave her the IV.

updated 12/29

Chehayla's Genetic Mutation

delF508

(2 copies)

This is important because the future treatment of CF will be based on what genetic mutation she has. The code (delF508) determines which point of delopment the protien channel failed to delelop correctly. Some people have multiple mutations (the channel failed at two steps of development), so they would be taking a "pill coctail". These new treatments will most likley be in the form of pills, and will reverse the basic defect of CF. ...Our job is to keep her lungs healthy enough, so that by the time these treatments are finished being developed she has enough "good lung" left to live a long happy life.

Clinic Updates

Last Visit Oct. 12th

-35.62 lbs. (previously 37.62 lbs.)

- 3' 4.7"

- ? oxyagen sat. (we didnt do that this time)

- lungs sound clear

- continue azithromyacin (oral antibiotics) M-W-F

- "beef up" her meals (add xtra calories)

Next Appt. Jan 18th

They Grow Too Fast

Followers

Friday, October 29, 2010

Flash Me Friday

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