Cystic Fibrosis

Hi Sweet Autumn -

The last few days have been trying. We received a call Friday that your PKU came back positive with the enzyme found in cystic fibrosis. It doesn't mean that you have cf, just that you have the enzyme present in your blood that indicates CF. There is a Pulmonologist who specializes in CF here in town who asked for us to come meet with him on Friday evening so your Daddy and I wouldn't be too confused while we wait for your diagnostic test, which is tomorrow morning.

He told us lots of positive info. For example, your numbers are low, and your weight gain indicates that if you do have cf you will fall into a group of 10% of those with cf with sufficient pancreas function. There have also been great advancements in the world of cf. The quality of life is greatly improved and these days with proper management, a normal life can be lived, and the advancements indicate that a normal life span is possible if you do have it.

If you do have Cystic Fibrosis, you need to remember a few things. IF it is positive... You are a healthy girl who happens to have CF. You will have to be slightly more diligent in taking care of yourself, but you don't have to worry about limitations. You can do anything you decide to. You are beautiful and amazing. You are the best thing to happen to me and your Daddy.

My cousin Mandy sent me these two links that have been amazing today.

http://m.youtube.com/#/watch?v=T0ip40j82ws&feature=youtube_gdata_player&desktop_uri=%2Fwatch%3Fv%3DT0ip40j82ws%26feature%3Dyoutube_gdata_player

http://www.lds.org/broadcasts/watch/ces-devotionals/2013/01?lang=eng&vid=2201224691001

Especially the broadcast is amazing. I just want you to have faith that if you do have this trial, we will 
All be fine, and your daddy and I are here to support you 100%. We love you and are so grateful you
chose to come to us. You are incredible and strong. We hope this enzyme just happens to be present and isn't 
connected to CF, for our sweet baby's sake. You are perfect in my eyes.

We love you, Princess.