New in the club... :-(

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TerriC

Guest
<br>I just want to tell you that I understand everything that you are going through now with a newly diagnosed baby as I went through that 23 years ago with my daughter. Just so youknow, she too had no lung involvement when she was born and to this day still has very little lung invovlement. She played rep. soccer and has run full marathons. I hope this helps you to look to the future with hope and know that when your daughter is 23 there will be even more treatments if not a cure for this disease. TerriMom of Lindsay 25 w/cf, and Courtney 23 w/cf
 
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TerriC

Guest
<p><br>I just want to tell you that I understand everything that you are going through now with a newly diagnosed baby as I went through that 23 years ago with my daughter. Just so youknow, she too had no lung involvement when she was born and to this day still has very little lung invovlement. She played rep. soccer and has run full marathons. I hope this helps you to look to the future with hope and know that when your daughter is 23 there will be even more treatments if not a cure for this disease. <p><p>Terri<p>Mom of Lindsay 25 w/cf, and Courtney 23 w/cf
 
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Kaethe108

Guest
dear Terri,

thank you for your words. It is always good to hear the "GOOD" stories! It is so important that the lungs stay as healthy as possible!
The doctors told us that nowadays it is no problem anymore to live with a nonfunctioning pancreas. He said in a few years you will even be able to swallow insulin. But the lungs are still the biggest issue with CF.
So let's make wishes that the lungs of our children stay intact as long as possible!

May I ask what mutation were found in your daughters?
 
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Kaethe108

Guest
dear Terri,

thank you for your words. It is always good to hear the "GOOD" stories! It is so important that the lungs stay as healthy as possible!
The doctors told us that nowadays it is no problem anymore to live with a nonfunctioning pancreas. He said in a few years you will even be able to swallow insulin. But the lungs are still the biggest issue with CF.
So let's make wishes that the lungs of our children stay intact as long as possible!

May I ask what mutation were found in your daughters?
 
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Kaethe108

Guest
dear Terri,
<br />
<br />thank you for your words. It is always good to hear the "GOOD" stories! It is so important that the lungs stay as healthy as possible!
<br />The doctors told us that nowadays it is no problem anymore to live with a nonfunctioning pancreas. He said in a few years you will even be able to swallow insulin. But the lungs are still the biggest issue with CF.
<br />So let's make wishes that the lungs of our children stay intact as long as possible!
<br />
<br />May I ask what mutation were found in your daughters?
 
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ElenaFalcon

Guest
Hi Aleksandra, Kaethe, i'm also new in the club and not very far away from you - we're from Russia, Moscow. Which compressors & nebulisers do you use? We use Pari but it is slow and weak - and my 1 y.o. girl doesn't like long inhalations.

Heather, hi again - you wrote that your Mobilair 50 psi is very good and fast. Regretfully, Invacare doesn't import Mobilair 50 psi to Russia, will have to figure out how to deliver it here.
 
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ElenaFalcon

Guest
Hi Aleksandra, Kaethe, i'm also new in the club and not very far away from you - we're from Russia, Moscow. Which compressors & nebulisers do you use? We use Pari but it is slow and weak - and my 1 y.o. girl doesn't like long inhalations.

Heather, hi again - you wrote that your Mobilair 50 psi is very good and fast. Regretfully, Invacare doesn't import Mobilair 50 psi to Russia, will have to figure out how to deliver it here.
 
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ElenaFalcon

Guest
Hi Aleksandra, Kaethe, i'm also new in the club and not very far away from you - we're from Russia, Moscow. Which compressors & nebulisers do you use? We use Pari but it is slow and weak - and my 1 y.o. girl doesn't like long inhalations.
<br />
<br />Heather, hi again - you wrote that your Mobilair 50 psi is very good and fast. Regretfully, Invacare doesn't import Mobilair 50 psi to Russia, will have to figure out how to deliver it here.
 
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AleksandraKaczynska

New member
Hi Elena, Asia has a PortaNeb compressor and a Pari LC Sprint Junior with a yellow inside piece nebulizer. We'll be buying a PARI TURBOBOY S compressor or Areoneb Go - I'm not sure. We would prefer Aeroneb Go but I'n not sure if we can afford it - we'll see in march.
There is also a special tent - BabyAir - for inhaltions from Aeroneb Go for infants.
You can buy both in Poland.
 
A

AleksandraKaczynska

New member
Hi Elena, Asia has a PortaNeb compressor and a Pari LC Sprint Junior with a yellow inside piece nebulizer. We'll be buying a PARI TURBOBOY S compressor or Areoneb Go - I'm not sure. We would prefer Aeroneb Go but I'n not sure if we can afford it - we'll see in march.
There is also a special tent - BabyAir - for inhaltions from Aeroneb Go for infants.
You can buy both in Poland.
 
A

AleksandraKaczynska

New member
Hi Elena, Asia has a PortaNeb compressor and a Pari LC Sprint Junior with a yellow inside piece nebulizer. We'll be buying a PARI TURBOBOY S compressor or Areoneb Go - I'm not sure. We would prefer Aeroneb Go but I'n not sure if we can afford it - we'll see in march.
<br />There is also a special tent - BabyAir - for inhaltions from Aeroneb Go for infants.
<br /> You can buy both in Poland.
<br />
<br />
<br />
<br />
 
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Kaethe108

Guest
We use a Pari Juniorboy S with Pari LC Sprint Junior and a Babymask size 1. Our Livia is only three months old.
<br>Inhaling 2 ml of Saline takes about 10 min I guess. I will check the time though.
 
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Kaethe108

Guest
We use a Pari Juniorboy S with Pari LC Sprint Junior and a Babymask size 1. Our Livia is only three months old.
<br>Inhaling 2 ml of Saline takes about 10 min I guess. I will check the time though.
 
K

Kaethe108

Guest
We use a Pari Juniorboy S with Pari LC Sprint Junior and a Babymask size 1. Our Livia is only three months old.
<br>Inhaling 2 ml of Saline takes about 10 min I guess. I will check the time though.
 
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ElenaFalcon

Guest
Aleksandra, Kaethe, do you have hts (3-7%) in Poland or Germany? I found only 2,1% hts sterile here - may not be enough for therapy - but 3-7% is not produced here, in Russia.
 
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ElenaFalcon

Guest
Aleksandra, Kaethe, do you have hts (3-7%) in Poland or Germany? I found only 2,1% hts sterile here - may not be enough for therapy - but 3-7% is not produced here, in Russia.
 
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ElenaFalcon

Guest
Aleksandra, Kaethe, do you have hts (3-7%) in Poland or Germany? I found only 2,1% hts sterile here - may not be enough for therapy - but 3-7% is not produced here, in Russia.
 
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