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LEZLY UPDATE 7:45PM Sunday: It's been a good day for Lez... she was able to be out of her bed for a while... the phys therapy team put her in a chair that allowed her to sit up and feel a little more like herself... I'm trying to work out a way for her to communicate with us better so she can...

I should have added this in my other post :) Our hospitalization insurance covers 80 or 85%, I forget. What we just last year is we bought supplemental insurance because Abby is in so much. It is called Combined Insurance, and it basically gives us money anytime we are admitted or have an...

Well we for the first time are just now bringing home 70K per year, we live in Texas, and have both been at our jobs for 12+ years. We have 2 children, one with CF, and one with no CF. Abby is 7 and has CF, we are on every help program we could find for the medications and we are paying...

I am so sorry!! Before I tell you this just please know that every person that has CF is different and their bodies handle it different. That being said I have a cousin that is 34 years old and has DDF508, he is AMAZINGLY healthy! He skips his treatments on a regular basis, he has only been...

LEZLY UPDATE 8:20PM Thursday: Happy Birthday Baby Girl!!! Lezly is still sleeping but the drs are adjusting her sedation down slowly... she's moving a little but not aware of anything yet. She missed her birthday but we're planning on having her party when she's back home at Papa's... Her CO2...

I just realized I should probably post a new thread :) Abby's second sweat test results are in .... 88!!!! These last 3 were over 100!! When she was 2 it was 109! I am so excited and beyond happy!!!! God is so good!!! Prayers were for sure answered today!! Party at the our house tonight!!!

It is working!!!!! 88!!!!!!!!!!!!!!!!!!! Praise god!!! This mom is on cloud 9!!!!!!!

LEZLY UPDATE 9:40AM Wednesday: We've been back in to see Lezly... she's heavily sedated and sleeping... breathing just over the vent which is good... the results of the blood gasses test shows her CO2 to be at 99, which is not good but much better than the 130+ that it was yesterday... we're...

PFT stands for Pulmonary Function Test. It's where you blow into a machine that measures your lung capacity. And I would really push for the Free MAP test to find your mutations. If you tell your Pulm. next time you see them they should be able to order the blood work needed to find out your...

She is such a wonderful person!! Can't say enough good things about her!! LEZLY UPDATE 11:45PM Monday: Lezly was awake when they let me back in the ICU unit at 8:30... she was not having a good time with the new trach... she's still a bit sedated and was not used to the feeling of the new...

Hi Danielle!! I am so glad you spoke up!! So very glad to have you join us! While I can't say that I've been there, I would like to say I am so sorry that you have been through all of that! CF is so cruel! I love your story of you and your husband!! I started dating my husband when I was...

My son has really bad allergies. I'm not sure where you live but a cold front just blew through Texas which has everyone hacking and sniffing. Clayton is on Singular and while I did get the generic with the latest refill, he is still on the real Singular and he is really bad right now. Could...

I'm sorry, but I just can't follow this no matter how hard I try. Can someone put this in "Jenny" terms as I like to call it? :) Thanks

RM...I am so sorry to hear about your daughter!! Abby has had 10 sinus surgeries with complications but none like that. My first thought was is she on Prednisone, but I see that she is. I would have thought maybe the swelling afterwards was getting to her, and the prednisone is to help with...

Welcome Back Tom!!! Glad to have you :) Croatia....didn't they film some of the last Bachelorette there? :) If so it was a beautiful place!!!

Sorry guys, no internet at home is killing me!! LEZLY UPDATE 10:30AM Sunday: Well, we had a bit of a scare last night... I didn't post it as an update right away because, well, it was scary... Lezly extubated herself, not sure if accidentally or otherwise... they had to replace it and this one...

Praying!! Hope you are back on your feet in no time!! Keep us posted

Lezly update 11:44am: Wednesday: Lez is breathing on her own and has been for about an hour. She seems a little tired but still breathing away...praying for strength and peace for her and that we'll have calm encouragement to give her to keep her going...Neen Hodge

Sorry all I have been so busy this morning!! Lezly update 3:25pm Today: I didn't have time to post what was going on as it happened...I was back there with Lez when the dr came in and made the call to start ween off process.. he turned the machine mostly off(it provided the air but did not...

Marci I have been following your story and I was so happy when the insurance approved you again!!