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Its been good to see so much information here. The posts have been very intresting. One of my main reasons for starting this was to get my daughter involved. I see she now is. Just wanted to say thanks to everyone. Mayson is now a little over 9 months old. He is gaining weight but sometimes it...

Its been good to see so much information here. The posts have been very intresting. One of my main reasons for starting this was to get my daughter involved. I see she now is. Just wanted to say thanks to everyone. Mayson is now a little over 9 months old. He is gaining weight but sometimes it...

I just wanted to say the feedback from this has been great! Mayson is now 9 months old. He is still a little guy (17.2#) But is doing fine. He is wanting to walk. HAHA! full of energy! Our lives changed 9 months ago. I had no idea how much. My heart goes all to all who battle with this disease...

Our Gransson had his first RSV shot in December. There seemed to be an insurance thing going on. They finally covered the shot (shots we hope) Other then the pain with giving him a shot in each leg he had no problems from it.

The second RSV shot is supposed to be already set up for a Home Health Nurse to come to the house the end of this month. I may have forgot to mention. My son-inlaws employer changed insurance companys effective 01-01-06. It could get rather complicated. It appears no one at the local CF center...

Ok, I assume by butter you mean real butter? As far as salt goes we have been adding salt to his formula for 4 months now. Believe it or not the only thing Mayson DOES NOT like is baby food mac & cheese. So, far he eats anything we give him. Except the mac and cheese, haha! He makes a weird face...

Well, I have never seen the movie Super size Me. I have heard about it. For now our grandson is too young to eat at "Micky-D,s" But I understand your questions and concerns. To my knowledge the CF clinc has never checked stools. They ask the kids what they look like. The doctors ask so many...

We are still using albueterol in a pari neb. Our grandson is 8-1/2 months old. I have not heard of Xopanex? We notice sometimes with albueterol he gets the shakes. I would like to here more. I know the downside to albueterol, I take it for asthma, have for years.

It is interesting to see all of the information and the comparing of treatments. Lots of good stuff. The doctors started our grandson on neb (albeuterol) and CPT (2x a day) when he was 4 months old. I of course questioned this because he showed no lung problem, as far as cough etc. What do I...

Well, we went in today for the RSV shot. Insurance decided to cover it. You were right about the cost. $3000 I was shocked. I am on vacation this week so I took my daughter and little tweek to see the CF pulmanary doc. She spent some time checking him over before they gave the shot. He seems to...

We appreciate the feedback from everyone. We had a scare the other day before Christmas. Our grandson made a little trip to the ER. We have felt very fortunate because since coming home from the hosptal 7 months ago, except for the trips to the CF care center and pedia doc, we fell he has done...

Thanks for the feedback everyone. It is intresting about the RSV shots. It appears it is a insurance thing. The CF clinic, or anyone for that matter have not called back.?? The kids are frustrated. Our Grandson is 8 months old. Maybe they think he is too old? However it was the resporitory CF...