February has changed everything for us as a family. We had been waiting on some testing to come back on Sarah. At this point we still had no idea what was going on with our baby girl. I recieved a phone call from her PCP that some testing had come back and we needed to call a # that was given to me and make an appointment with the pulmonologist. What? I call and spoke with a nurse and I asked her if she was able to tell me what the test results were because at this point I still did not know. That was when my life changed forever. She said, "Sarah has tested positive for Cystic Fibrosis." I think that my heart stopped for a minute.
- So I am sure some of you are asking what is Cystic Fibrosis or know as CF?
Cystic fibrosis (CF) is a genetic disorder that particularly affects the lungs and digestive system and makes kids who have it more vulnerable to repeated lung infections. The current life expectancy for someone with CF is 37. They are making great strides everyday to improve this #.
- What does this mean for Sarah?
Well we are not really sure what the future holds for Sarah. Right now she has pretty much only had digestive issues. She is on a high calorie formula to help her gain weight, multi vitamins since people with CF have a hard time absorbing, pancreatic enzymes, and acid reflux meds to go with the enzymes. Last month she was also started on a Nebulizer twice a day plus Chest Physiothearpy (CPT) twice a day.
We are taking it day by and and we know that we are being held in God's loving arms. He will guide us through each step of this journey. Tomorrow Sarah has her third visit to the CF Clinic.
- What about Brooke and Emma?
Each parent has to be a carrier of CF in order to pass it on to a child. So that means with each kid there is a 25% chance they are going to have CF, 50% that they are a carrier and have no symptoms of CF, 25% chance that they don't get the genes at all. We had Brooke and Emma tested 6weeks ago today. It takes 6-8weeks to get the results back. It took 7weeks for Sarah's test results to come in. So I am expecting to hear back next week.
No comments:
Post a Comment