Not CF related thought i'ld share

[anonymous]

Just thought I'ld share my morning. I had such a sweet time with my daughter doing such simple stuff. Went to Wal-mart with Maggie to get some clothes for her cause she's growing and needs a bathingsuit. She like to pick stuff out and picked out 2 cute t-shirts, flared stretch pants, and such a cute bathing suit. Her belly looks so round in it but in a good way. We went to BK for lunch together then went home so she could try on her clothes. Now she's doing her vest with her new bathing suit on on her new t shirt and pants on too(it's raining out and we're not gong swimming today but she refused to take it off) She was dancing around with her new clothes on saying she has fancy pants on. She gave me the best Mother's Day present already today and she doesn't even know it. I guess i'm feeling very sappy today. I guess this is part of CF, you just enjoy the little moments.

Rebecca(mom to Sammy 7 no CF and Maggie 3 with CF)

 

[anonymous]

That's a lovely story. Your absolutely right about the little moments - little things sure mean a lot. If you don't mind me asking, how long have your been doing the vest on your daughter?

Charlotte<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[anonymous]

Hi Charlotte,

My daughter has been doing the vest since she was 2 and a few months. It 's really been a wonderful thing for our family to have the vest.

Rebecca

 

[izemmom]

Thanks for the reminder to enjoy the moments. I'm having one of those days when cf scares the living daylights out of me and it's hard to smile. But you made me smile. Thanks! I needed that!

 

[JazzysMom]

Treasure them!

 

[anonymous]

Karen,
Thanks for your kind words. Tami, I hope things get better for you soon. We've all been there. Let us know if we can help.

Rebecca

 

[anonymous]

while you are talking about "the vest", i asked our dr. at last appt. they said we would not be getting them in uk ( on the national health service) because of the cost. they are really expensive aren't they? are they good . is it better than manual tapping ?

 

[anonymous]

Hi there,

The VEST is approximately $15,000. Our insurance co. paid the cost. The cost includes a life-time warrattee on the tubes, chest vest , carrying bag, and I think service on the vest. We got ours from Hill-rom. The Hill-rom company has been great for us. The have already replaced the chest vest 3 times, the velcro tends to wear out fast. The Vest for our family has been truly wonderful. I did manual cpt on my daughter for 2 years, the vest gives us more freedom, especially since I have another child who needs my attention as well. My daughter does the vest 3 times a day 20 min at a time. Respiratory therapist told us either way of airway clearance manual vs. cpt is same. from personal experience, the Vest is more effective and efficient.

HTH
Rebecca

 

[anonymous]

ooh! yhey do sound good. shame we can't have one , we just get what nhs can afford . i'm not complaining though , my son has excellent care from our local hospital.