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LEZLY UPDATE 11:20AM Thursday: it's another sleepy day here... Therapy yesterday was tiring for her... Not sure how well she slept last night but therapy has already been here today and after waking her, had Lez sitting on the edge of her bed again... Her O2 dropped a bit but she sat there for a...

LEZLY UPDATE 10:20AM Wednesday: looks like its gonna be a sleepy day here.. At least this morning. They said Lez had a rough night with lots of mucus plugging her lungs. They did a lot of suction on her during the night and after the therapy yesterday she's wore out.... She should be more...

Thanks, I am trying really hard not to mess this up :)

We have been going there since Abby was 2 and she's now 7. They are like family to us. I have seen almost all the dr's there and they are really great. Not sure about the lung question. To me it is humid here. I always wondered if being by the salty air would help CFer's or not :/ I've...

LEZLY UPDATE 12:25PM Tuesday: Lez is doing good today... She is awake and aware and her vitals are good... Therapy hasn't been here yet but they will be soon... Lez wanted me to say hi to everyone and thanks for praying for her... She hopes to be able to start doing her own statuses very soon...

Wow thanks!! It just scares the mess out of me! That's one thing I have going in my favor is I NEVER lie to her. I don't tell her everything but I make it a point to never lie about what I do tell her so that she can trust what I say. :)

Hi!! My son has ADHD and ADD and Abby when she first started they made a huge fuss over her too. But she was coming home with stomach aches so I asked if they could let me know what and how much she was eating and how many enzymes they were giving and when for about a year until the staff felt...

Wow Rebjane!! That is my worst fear!! I fear the day that she googles CF or one of her friends does and tells her that she has a life expectancy. We don't make a big deal about it, we let her know that she is different but it's nothing that she should be concerned about. She has such a...

Sarah that is something!! I'm so glad to hear that Johnny is doing so well!! It makes me feel good to know that they somewhat understand and aren't afraid to talk about it. I know I had that kind of moment when Abby started gymnastics last month. Her eye is messed up do to some of the...

Sorry I was off work yesterday therefore..no internet :( Here are the updates LEZLY UPDATE 11:30AM Saturday: kind of a sleepy day this morning so far... Her vitals are pretty good... Apparently there was no blood gases test done... She is still needing to flush a bit more fluid... Her hands...

LEZLY UPDATE 11:45AM Friday: The day has started off pretty good.... Se was awake when we got here this morning... Shortly thereafter she fell asleep and has been drowsy since... Her CO2 is down to 90 and her pH is better... They're stopping part of her antibiotics and changing up some of her...

LEZLY UPDATE 11:00AM Thursday: a sleepy start to the day... Lezly was awake when I got here and responded to my questions but I think the night took a lot out of her... Her vitals are pretty good and we are expecting today to be a good one... No blood gases test last night so I'm not sure what...

Well, that's odd they haven't posted an update this morning or last night so I will keep an eye out and pray that everything is ok. I will try to post as soon as I see an update. :)

Oh wow Ratatosk!! I was typing and didn't see your post!! That would be so helpful!! You might send him a Private Message if he doesn't see this thread.

First I am so sorry, I know it is quite a blow to find out! And it is so awful watching your child suffer and feeling so helpless. Secondly I think experience with CF is a must when it comes to treating someone with CF, because it is so different than anything else, and everyone who has it is...

Thanks Ed!! And you are my favorite smartazz! You always make me laugh even when I don't want to!! ;)

Well God was quick to answer that prayer!! Michael boss just called back and told me that they reevaluate insurance once every 5 years and it was this year and they did that on Oct 1st and decided to stay with the insurance that we have for the next 5 years!!! Thank you God!! And Natalie :)

It's not effective on most DDF508. I went to a CF education day last weekend and asked the Vertex Rep point blank, and she said it did have an effect on some, just not as good as the G551D, and they have no explanation as to why. For instance these things that we are seeing with Abby, is it...

It can be overwhelming! I am so glad that she is getting better and it's always a relief when they put the weight on :) Sounds like you're on top of things mom!! :)

Natalie I am so glad you posted your experience! It hasn't crossed my mind yet about my husbands work changing insurance companies!! I even stopped midway through typing this and immediately typed Michael's boss an email!! I believe they usually change insurance in October!! I am so very...