This is a one month prescription
630 pills. This is Kyla's percussion tool
used for respitory therapy.
For those of you who don't know already, our daughter Kyla has Cystic Fibrosis. It is a rare genetic disease that is most common in white anglo-saxton decendants. Most people don't know but to be a "carrier" of one of the genes is very common, however to just be a carrier is not to have the actual disease. It takes both biological parents having the gene to produce a child with "CF".
Well both Jeremy and I carry the gene therefore Kyla was born with it. 8 days after we brought her home I recieved a phone call from the hospital saying that he blood screens came back abnormal, which was very common and they needed her to come in a do another set of them. I had never even heard of cystic fibrosis so I wasn't sure what exactly we were dealing with, in my mind I guess I thought "we will just get her some medicine and it will be fixed", but I was very wrong as I would come to find out.It took her 4 weeks just to reach her birth weight. She was this tiny little thing. Also she was having serious digestive problems that were painful for her and even more painful for us to watch her go through. There were signs that were there "failure to thrive" which means she wasn't gaining weight, I suppose looking back I knew but I was praying to God that it was all in my head and she couldn't possibly have anything wrong with her, she was my child and she was perfect... After weeks of testing and re-testing, her being so young there was only one true way to find out which was to take blood and send it to the labs in California, this took 4 weeks to confirm the worst news I have ever recieved. Our daughter has Cystic Fibrosis and there is NO CURE. Those are not words that you want to hear ever let alone being a first time mother.
It was devistating, I don't think it really set in for awhile. I just pretended it wasn't there. Until our first visit to the doctors office... not the pediatrition, the University of Kentucky Pediatric Pulminary Clinic. It even sounds scary. That first visit was aweful it was very serious and a lot of information to take in. It lasted 4 hours, and it came with a team of doctors....a dietition, and respitory therapist, a social worker, a primary physicain, and a nurse coordinator. After explaining to me what the disease was and that as of now those patients with cytstic fibrosis have a life expectancy of 37 years old, yes on top of all we had been through they were now telling me that my child basically had a shelf life, after all of this they gave us a three ring binder that was about 4 inches thick and sent us on our way for the time being.
Small changes came first....they put Kyla on enzymes to help her digest her formula, so at 5 weeks old she began eating applesauce with the medicine mixed in so she could take it. She takes this before every meal and always will, forever. She also started taking special vitamins once a day that mix in her formula. Shortly after we got her weight gain and digestion under control we began respitory therapy. This is done with a small tool, twice a day for 20 minutes I pound four different areas of her chest back and under arms with this tool. It loosens the mucus in her lungs and keep them relatively clear of infection.
So far all of the preventative meds and therapy have helped tremendously. Kyla is now in the 50th percentile of her growth chart for weight and the 75th percentile for her length. She is happy and healthy and smiles for days. All of the above has now become second nature to my husband and me and our families. It is just something she has it's not who she is. We thank God everyday that we were blessed with Kyla just the way she is. She is going to have a wonderful life and she is lucky to have two parents and many extended family members that love her more than anything in the world.
I will continue to keep updates posted about all the new adventures we experience as we raise a child with an illness. Hopefully this blog can be of help to other mothers out there who are going through anything similar. I know that there are times I feel as if I don't have anyone that can relate to me and I want to make sure I am doing all I can to inform and support others like our family ;o)