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We have one and I love it!! It helped me know when she got walking pneumonia because I could only hear her rattling when she tried to do a PFT, plus the dropped PFT's of course. :) Jane it is very inexpensive and you do not need a prescription for it or permission. We got ours off of Amazon...

So I have a question... at our clinic we always just focus on the FEV1 liters...like Abby's right now is 1.51L so how do you know what percent that is? There is a field on her PFT's that is labeled FEV1 percent Predicted, but I wouldn't think that that would be it as it says "predicted" Can...

http://www.healthcanal.com/disorders-conditions/33302-Marine-sponges-advance-cystic-fibrosis-research.html

LEZLY UPDATE 4:45AM Friday: This morning at 4:39 AM heaven gained another CF Angel... Lezly passed from this life into a world of breathing easy peacefully... I did not update for a while because I had more pressing things on my mind... I will post service arrangements as we know them... — with...

We have a Piko 1 that cost around $69.00 and it does good FEV1 and I think it gives FEF too, but I never have paid attention to that number. We checked it with our clinic and it matches theirs perfectly and is small and easy to use. It let me know when Abby had walking pneumonia. You can buy...

LEZLY UPDATE 11:20AM Wednesday: Lez's vital signs are about the same as last night. Her temp is back up and they've started using the new jtube for feeding and meds... Please continue the prayers for her that the digestive system will start working and other problems will be healed... And...

LEZLY UPDATE 11:00PM Tuesday: Lez is doing ok... her vitals are not exactly where we'd like to see them and her temp is low... they've got her covered with a warmer to get the temp up... they're planning on starting the tube feeding back up tomorrow and hopefully that'll kickstart her digestive...

LEZLY UPDATE 11:10PM Monday: The GI doctor finally made it down to re-evaluate Lez for the Jtube procedure. They have re-scheduled it for tomorrow early... please be in prayer for her and for everyone involved that it go smoothly and with no complications... i think she is scared about the...

LEZLY UPDATE 10:40PM Friday: Lez is about the same... Bp is low, O2 is is the barely good range and CO2 is high... She's not really responsive to us.. The dr said they may try the jtube again next week if she stabilizes by then.... — with Lezly Hodge and 2 others. LEZLY UPDATE 10:42 AM...

Thanks semperfiohana!! LEZLY UPDATE 11:21 PM Thursday: Lez is still hanging in there... her vitals are about the same as they have been all day... O2 in the good range, bp is a little low but not enough to cause real worry, her CO2 is still high but coming down slowly (she responded as little...

LEZLY UPDATE 10:10 PM Wednesday: Another round of meds for Lez's digestive problems is scheduled for tonight... praying this one works better than the last time... she really really needs for it to stimulate her digestive system to begin working... her vitals are not much changed from this...

Yes, Abby has 2585delT which is a stop codon, Class I mutation. Her stop is right at the beginning of the protein. Abby is 7 and on Kalydeco. While it is not her "cure" it is helping her. It has improved her lung function, decreased her sweat chloride and helped get rid of the bugs in her...

LEZLY UPDATE 9:58PM Tuesday: Not much change here today... Lez is doing a little worse than this morning... they've re-started the tube feedings (after 4 days of no nutrition at all) in the hopes that her digestive problems have been resolved... the next 24 hours will tell whether her bowels are...

the lungs were a no-go…they were bruised I know I couldn't get over the age either. Hugged my little one extra tight last night!! Please keep them in your prayers.

Sarah.. 10 years old with CF just got the call from CHOP about new lungs..prayers that they are a good match and for the donor family... A friend of mine just posted this. I will try to find out more, but in the mean time, please help me pray for these family's. I can not even begin to...

Well said Mom!!! Kids are a blessing!!! I thank God for my children everyday!!! Help is on the way...just have faith and we will get our miracle!!! In the mean time Landen is in very good hands and is lucky to have such a caring mother!!! :)

I have always wanted to make a video to Rascal Flatts "I won't let you go" That song makes me cry every time I hear it, because that's what I want to tell her, is that I will always be there for her no matter what!!

LEZLY UPDATE 10:55PM Monday: We got back from a quick run home to watch Brexton play basketball and get a few hours away from the hospital and the noisenoisenoise of the bells, alarms and phones. A little bit of normalcy was wonderful... When we got back the nurse filled us in on the day...

LEZLY UPDATE 11:15AM Friday: Lez was asleep when I got to her room this morning... She had an okay night but I figure she's still tired from the phys therapy... They made some adjustments to her vent settings to keep her O2 levels up... Give her a chance to get over this bump in the road...

Oh Hi Elly, I just saw that you go to Houston as well!! Yes they are great aren't they!! Maybe we'll bump into each other sometime now that Abby won't be listed as "shuttle" an put immediately in a room. She has cultured MRSA for years now and thanks to Kaly we had our first normal flora last...