Lil' Chris had his 3 hour 4 year annual CF clinic visit today and it went GREAT!!!! His weight was 38.6 up from 37.3 and his height was 42 inches up from 40 3/4 and his BMI was 47% down from 50%. They didn't seemed to worried about it only being 47%. They usually want CFers to be above 50%. They said he had a growth spurt!! I'm just glad he can go on the 42 inch rides at Disney now:) LOLAll 8 different nurses/dr's that we saw today said to "keep up the good work and that he is doing GREAT!!!" Gotta LOVE hearing that:) They made no changes to any of his meds since he is doing so well. YEA!! They did take a throat culture test, so now it's just the waiting game;( Why must they torture us so long?!?! Please pray it comes back "normal." I'll let you know when I find out.
A few tips that we took away from todays visit:
1. It's common for CFers to get thirsty when doing the Vest. If you put your hand in front of their mouth, you can feel the air being forced out, so all that air may make them thirsty.
2. You can get a letter from your CF clinic for places like Disney to get in front of the lines or in the Fast Pass line for free so that they don't dehydrate waiting in the long lines in the heat. We got our letter today!! YEA!! I think it's for up to 6 people too:) Thanks Chrisy To Jobe for mentioning that one to me;)
3. New high calorie drink to try, see pic above. He drank 1/4 of one there, but we'll see if he will drink it at home.
4. To all my CF buddies...email CF_Panel@wwmr.com to sign up to earn some extra money while helping out the CF community, or you can call 1-888-947-2339 extension 112 for Michelle Nordstrom. So far I have raised $775!!! WooHoo!! You get $50 just for joining and $25 every 6 months!! Please mention you heard about the study from me, Michelle Neher, and I'll get another $50!! Thanks:)
5. Also, there is anther open CF survey right now so call 1-888-798-1889 extension 255 to do a 60 minute CF study and you'll receive $125!! This study is for you or your CF child that is between 6 and 17 and is currently on Tobi. The ladies name is Chris and she said to call even if you don't qualify b/c they may have another CF study for you!
Thanks and I'll let you know if I come across any other legit CF studies or surveys.
Well, I've got a TON of things to do, so I'll write more when I have time:) Thanks for the 28,000 hits!!
M
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2 comments:
Glad the appointment went so well! Praying the throat culture comes back nice and clear. Hopefully soon we will get some nice spring weather and the rain will leave. BTW great job with the walk. You are a born organizer and fundraiser! Mary
That's great about lil Chris's appointment....i'm so happy!! I will be praying the throat culture comes back normal.
And yay for the disney pass. That helps so so much.
Congrats on the huge success of your CF Great Strides Walk. That is awesome! We had a new Kohls store recently open, so we had volunteers from 3 Kohl's stores there....we love our Kohl's volunteers!!!
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