Well actually I posted a good while back. Since then Jaden was diagnosed with CF at 8 months and is 15 months old and doing well. Right now she has Pseudomona and I will be doing breathing treatments for the first time, any help tips on how to keep her sitting? I'm kinda relying on Barney as we do for her CPT and does great with. I know this will be new for her and I can see her wanting to touch everything.
Any advice would be great. Thanks :)

My son was dx at 5 months and I found when he was young, the treatments relaxed him. The sound of the neb would sometimes put him to sleep. As he got older, and more fidgity, we had to get creative.
I would sing and clap his chest to the beat, always smiling- very positive.
I let him touch everything-- nothing's off limits.

He's 3 now, and likes to hold the neb. himself and will clap me sometimes, too.

I try to keep the mind set that even though its new to me, I can't show that I'm nervous or apprehensive about it. So even if he doesn't get EVERY puff of albuterol because he's checking out the tubes- its all OK.

These little ones are amazing and adapt to all the "different" things they need to do. Its definately not easy all the time-- I've been told by many CF nurses that CF children are strong willed and strong minded. Nothing could be more true in our case.

DS was diagnosed at birth. Started treatments at about 1 week. Lot of times he'd fall asleep. We do CPT with Albuterol and Atrovent three times a day. Then Pulmozyme (once a day). And we do Tobi after the CPT. He usually watches cartoons on Nick or has some dvds he likes. Keeps him occupied. As does a bag of action figures. Before he got interested in TV we'd sing old mcdonald over and over again to keep him entertained. We also go fish masks from the RT at the clinic. So instead of a boring mask. He's got a fishy.

He sleeps thru the early morning treatment, which I start at 6. I do CPT then he snuggles in bed with DH while I get ready for work. We do his second treatment after work and the last one before bedtime. He usually falls asleep or is sleeping thru that one.

I did find out that when we first started Tobi, I had a compressor/nebulizer that took wayyyy to long -- took 35-45 minutes to do Tobi. Switched to one that was recommended and treatments decreased to 20 minutes. A real time saver.

BTW, there's a story called Mallory's 65 roses and the character pretends the an astronaut when she does her breathing treatment. The book was published by scandiafarm, so ask your CF clinic about getting a copy. Might be something to read to her while doing treatments.

OH thank you so much. I am so nervous and feel so overwhelmed at the moment. I know I was very nervous doing her CPTs and now they are nothing to do. I know it will take some getting used to, guess I just needed to hear from someone else. The fish mask sounds cool. The center is going to send me a dinosaur pack for her, so I am curious and to what that is. She is a fisty little girl. Hugs to all the littles one and big ones too. :) Thanks again.

Tobisauraus -- the Tobi Dinosaur. We've gotten stuff from our RT. A tobi backpack, stuffed animal, stickers, video that talks about tobi... Some other cool stuff, too. Although we've never watched the tobi video.

I'm usually okay with stuff until they add a new drug or treatment to the mix. And it just seems like oh, no not another thing to deal with. Last appointment they added the pulmozyme, which really hit home that DS has CF. 'Cuz to me pulmozyme is drug that OLDER kids get put on. DS is only 2 1/2. But whatever it takes to keep ds healthy.

There are some new treatment options coming down the pipe. The FDA just approved something called the E-flow system by pari -- an electronic nebulizer that's currently being used in Great Britain that cuts treatment times quite a bit.

Well the treatments went ok. Today we both cried throught the albuterol, she was so not enjoying sitting there, but we made it, then she fell asleep during the Tobi which was great. She took a nice nap and is already for her day. Whatever it takes to keep them little lungs healthy.
I understand about the CF hitting home, when we got the call about using the neb I really realize she really has CF and its time to do some major work now. I mean the CPTs we had down and the meds were just apart of the routine and I got into the swing of it and now this. I guess we'll adjust and be ok.

I hope that the treatments get easier for you and her to handle! Crying is no fun for either of you. I remeber crying when DS was a newborn and he wouldn't eat. Now he wants to eat all the time! Good luck!

Thanks. Jaden eats like a little piggy and is doing well with her weight. We'll see how tonight goes. I'm feeling alot better and think it will be easier.

Just wait until they turn 16 and they eat like there is no tomorrow, but they don't want the cheap food like mac and cheese, they want stuff like steak and lobster and shrimp. :eek: But I am happy that he is eating and gaining weight.

Steak and Lobster is good. My hubby is a big steak person and we love seafood. Now I'm hungry, LOL