They Grow Too Fast: Quote of the Day #1-How to play

Friday, July 9, 2010

Quote of the Day #1-How to play

How to Play

So I thought we could play a little game. I'll post a quote from one of the kids, and you comment on who you think said it. I might not have something every day..just as they are delivered to me. I will post the answer to the previous quote when I post the new quote. Todays quote was the inspiration for this game.(Ill try to find a picture that goes with the quote, just cause I like my pictures.)

Quote of the Day

"....is that heaven's cloud....."

2 comments:

rhonda_vueJuly 9, 2010 at 7:27 PM
I think Hayla said that.

Mammy
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UnknownJuly 10, 2010 at 1:20 PM
I AGREE WITH MAMMY, I ALSO THINK CHEHAYLA SAID THAT.

LOVE, NANNY
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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

Followers

Friday, July 9, 2010

Quote of the Day #1-How to play

2 comments: