First Time Here...

debs2girls

New member
Welcome Tara. My daughter is black too and her first pulmo doc wouldnt test her for cf cause she said it was rare that she would have it since she is aa. She has one known mutation and one they havent identified yet. Most of her problems are respitory. Cheyenne is the same age as Kennedy and also 51 pounds. How tall is she? Cheyenne is in Ktgn because her bday fell 18 days too late...so she had to wait a year.

Where is your blog? I couldnt find it..but I am blonde...lol
 

debs2girls

New member
Welcome Tara. My daughter is black too and her first pulmo doc wouldnt test her for cf cause she said it was rare that she would have it since she is aa. She has one known mutation and one they havent identified yet. Most of her problems are respitory. Cheyenne is the same age as Kennedy and also 51 pounds. How tall is she? Cheyenne is in Ktgn because her bday fell 18 days too late...so she had to wait a year.

Where is your blog? I couldnt find it..but I am blonde...lol
 

debs2girls

New member
Welcome Tara. My daughter is black too and her first pulmo doc wouldnt test her for cf cause she said it was rare that she would have it since she is aa. She has one known mutation and one they havent identified yet. Most of her problems are respitory. Cheyenne is the same age as Kennedy and also 51 pounds. How tall is she? Cheyenne is in Ktgn because her bday fell 18 days too late...so she had to wait a year.

Where is your blog? I couldnt find it..but I am blonde...lol
 

Mairi

New member
Hi Tara,

My name is Mary and I have two sons. One age 5 wocf and a 2 yo wcf. Our son also has the N1303k mutation and another pretty uncommon one which I can't remember at the moment. He also has more problems with digestion than his lungs and is also on a high enzyme dose. At the moment his cf team are trying to lower it by giving him omeprazole to nutralise his stomach acid so the Creon will work better. His is also a good size and weight and is doing really well. Interesting to read about your daughter. We are from Scotland and we have been told that both our son's mutations are pretty uncommon here. Just going to look at your blog now - see what you all look like

Mary
 

Mairi

New member
Hi Tara,

My name is Mary and I have two sons. One age 5 wocf and a 2 yo wcf. Our son also has the N1303k mutation and another pretty uncommon one which I can't remember at the moment. He also has more problems with digestion than his lungs and is also on a high enzyme dose. At the moment his cf team are trying to lower it by giving him omeprazole to nutralise his stomach acid so the Creon will work better. His is also a good size and weight and is doing really well. Interesting to read about your daughter. We are from Scotland and we have been told that both our son's mutations are pretty uncommon here. Just going to look at your blog now - see what you all look like

Mary
 

Mairi

New member
Hi Tara,

My name is Mary and I have two sons. One age 5 wocf and a 2 yo wcf. Our son also has the N1303k mutation and another pretty uncommon one which I can't remember at the moment. He also has more problems with digestion than his lungs and is also on a high enzyme dose. At the moment his cf team are trying to lower it by giving him omeprazole to nutralise his stomach acid so the Creon will work better. His is also a good size and weight and is doing really well. Interesting to read about your daughter. We are from Scotland and we have been told that both our son's mutations are pretty uncommon here. Just going to look at your blog now - see what you all look like

Mary
 
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