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Steve, My daughters mutations are DF508 & R1158X1. Just 3 months ago, she was classified as moderately severe after having her first bronch done. (She is 7, and we recently switched clinics. I felt her original clinic wasn't being as proactive as they needed to be.) We had always thought she...

On March 20th, I took Bek to the Children's Mercy Urgent Care Center. Turns out she had strep throat. They gave her a shot of penicillian in her butt and said she should be good to go. They said as lond as she wasn't running a temp, that she could return to school on Monday. Well, her cough has...

After 22 days in lock down (she couldn't leave her room except for PFT's and x-ray), WE ARE HOME!! We got released yesterday afternoon, and it felt so good to be able to relax in my own home! They sent her home with a Bactrim order, and a Mucomyst order. Her team doesn't usually use the...

On Monday during Bek's care plan meeting, we were told that her liver enzymes were a bit elevated. They said that since she had been on the Vanc, that they weren't surprised by it, but they would keep an eye on it. She had an ultrasound done yesterday morning, and when I asked her doc today...

I also posted this in families, but I'm looking for all the info I can find. We found out that Bek has cultured Achromobacter. After looking it up on Google, I have to try to find out what strain she has. It might still be to early to know, but I'll see what I can find out. Her nurse came in...

We found out that Bek has cultured Achromobacter. After looking it up on Google, I have to try to find out what strain she has. It might still be to early to know, but I'll see what I can find out. Her nurse came in earlier and showed me a note that was written - Achromobacter sp. rare gram neg...

Ok, so Bek's doc came back to her room early this afternoon and asked Bek if he could borrow me for a minute. We went out into the hall so that we could talk away from Bek. Now, I know I won't be able to remember word for word, but basically he told me that with her here all last week, this past...

Ok, we've stopped the IPV that Bek was doing. After each time she did it, she would cough up mucous with streaks of blood in it. Today (1/12) was the first day she didn't do the IPV and she didn't bring up any blood. YAY!! Feeding tube is on hold for now since her father thru a fit and is dead...

Doc was in this afternoon and said things are looking good. She has been bringing up mucous with every cough. Last night she had the pencil eraser size clot of old blood, and today she had a fresh blood streak in the mucous. Just once, though. The results of her glucose tolerance test came...

Bek's doc wants to do a blood glucose test on Bek in the morning. My only question is (since I forgot to ask the nurse practitioner) how long will it be before I know the results of the test?? They don't suspect it, but since 'buggies' like high sugar content environments, they just want to...

I'm not sure where else to post this - Please keep a family from my community in your prayers. Thirteen year old Kenna Bradley, who was diagnosed with AML Leukemia in May of last year, passed away earlier this evening. She endured so very much and fought a hard fight, but she could do so no...

11:15 a.m. Well. She coughed up a sample yesterday, and it was good enough of a sample so that she won't have to have the bronchoscopy. It was also a good enough sample so that after the preliminary results came back, it showed that she may have grown pseudomonas. Doc Black is certain that's...

My ex-husband was hot-lined, and the recommendation was that she not go to his house til the investigation is done. He tried to go ahead and pick her up tonight, but left without her. My question is, now that Children's Services has gotten involved, will they get it into court in front of a...

Hi all, A couple of weeks ago Bek had an ear infection and was put on an antibiotic. When I took her back for her follow-up, her primary told me that he thinks she now has allergies (he saw some water in her ear and said they both looked plugged - but no wax build-up) so he put her on...

Hi everyone, We had our visit with Dr. Black and everyone else today. Unfortunately it wasn't so good. Once again, they tried her on her blowing games, but either she just wasn't interested, or she just knew that she wasn't going to be able to do a good job since she would start to cough. She...

I've read a lot on here in the last several days about getting cleaned out, or a tune up. As a parent that hasn't been there yet, how do I know when my daughter needs to go to the hospital? On June 4, 2009, Bek was put on Bactrim. I called her CF doc to let them know that she still had a nasty...

The Songs of Love foundation makes CD's for kids, up to age 18, for kids with all types of disabilities. They do this free of charge. It normally takes about $250.00 to make a CD, but they are able to make them free because of donations. The songs are individualized for each child, and they...