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LEZLY UPDATE 10:15pm Tuesday:today has been a strangish sort of day... She slept for a lot of the day but worked pretty good with the therapists... Then she got antsy and anxious about 6 or so and needed some med to calm down... Now she's antsy again and will need the nighttime med to help her...

I am so very sorry for your loss!! She was a beautiful young lady!! Prayers going up for your family!!

LEZLY UPDATE 10:00PM Monday: Bedtime for Lez.. she stayed up most of last night unable to sleep and only grabbed a couple of catnaps today... she is tired and they gave her some calming meds a little while ago so she should be sleeping all night... it was a pretty good day today... she...

Sorry guys!!! Work and personal stuff keeping me occupied today :) LEZLY UPDATE 10:20PM Saturday: Lez is improving... she was in the therapy chair twice today for a total of about 3.5 hours... they've stopped doing the blood gasses tests... she now just has to build her strength and stamina for...

I wish I had some words of wisdom... I just wanted to let you know how sorry I am and I'm sure my day will come!! Aboveallislove your response sounds good!! I absolutely dread the day she figures that out!! I just pray so hard that it doesn't change her personality! 9 seems so young to start...

Oh thank you so much for sharing this with me!! I am so torn on what to do! Temple is an hour away and TX Children's is about 3 hours! We have been with TCH since Abby was diagnosed at 2 and she's now 7!! I just don't want to make a mistake :) Thank you so much!! I am going to go to their...

Can anyone tell me their personal experiences and opinions about this CF center? We are thinking of a possible switch. But really want to know what others think of this clinic. Any info is greatly greatly appreciated!!! Thanks so much!!

We use a (oxygen?) mask that you get from a hospital with tape over the hole, if that makes sense :/ When she was little we had an infant mask.

LEZLY UPDATE 11:30AM Thursday: Lez finally woke up a few minutes ago... her Co2 was 70 (down 4 points) :-) Her O2 is staying in the mid to upper 90's... phys therapy was here before she woke up and just decided to let her sleep and work with her this afternoon... She is completely off...

Congratulation sierradavis!!!! So happy for you!! Sounds like you are well on top of everything!! What a way to celebrate Thanksgiving!!

Hi Julie, when in doubt I always say mom knows best! How did your child do in your opinion when on enzymes? Sounds like he felt better and he gained weight. Sounds like he needs enzymes to me. I would fight for what I felt works for my child. And of course I'm not saying ignore your dr's...

Thanks GenH!! I appreciate it!! Makes me feel better!! :) I will let yall know how her dr reacts.

Thank you so much!! I will for sure let you know how it goes!! I thought that it usually got higher as they get older. I just want to be prepared. I'm not very good when under pressure :) It's best if I am prepared going into what might be a stressful situation. :) I hope that he is as...

Oh, that is wonderful news!! Anytime you need any advice please ask! Everyone on here is so helpful and supportive! And congratulations!! It will be a challenge at times, but well worth every last moment!! So very happy for you and your family :)

Hey guys I am just wondering if sweat chloride numbers can drop by 12 points or more on their own? We are going to see Abby's dr Friday and I want to be prepared for whatever he might say. Our last 2 conversations he was very negative and explained away everything. I hope that he surprises me...

LEZLY UPDATE 11:54AM Tuesday: Another sleepy but good day... phys therapy has been in here and worked with Lez and she did well... the nurse today has also been working with her trying to build her shoulder, arm and thoracic muscles... her CO2 is still a bit high but not alarmingly so... she's...

I would for sure if nothing else call your old CF team. If it were my child, I would want HER CF team that already knows her in on something this big along with the new CF team. If you are gonna stay there you should go get to know your new CF team even if you didn't have an issue. But...

Thanks for the information :)

LEZLY UPDATE 11:00PM Monday: Today was an OK day for Lez... she slept a lot of the day but did do phys therapy twice... they want her to build up her shoulder and thoracic muscles to help her lungs and breathing to prepare for weaning off the vent... 6 weeks in a bed has played a cruel trick on...

Does anyone know what is going on with Ataluren? I haven't seen anything in a while. Abby has a class 1 stop codon and it is helping her, not to the extent it is helping G551D but I will take it, and I am thinking that the Ataluren will further help her, but I haven't heard one word about it...