Joseph Arthur Lopez, our firstborn was born on July 31, 2001 in Sacramento, Ca. At his four month checkup with the pediatrician, it became quite apparent that something was wrong with our little boy. Our child was not gaining weight. He weighed less at four months than he did when he was born! We were admitted into the hospital. We spent a week in the hospital undergoing tests to try to determine why our son was a "failure to thrive.” At about 5 1/2 months of age Joseph was diagnosed with Cystic Fibrosis (CF). We had no idea what CF was or how it would affect our lives.
There are a lot of emotions that go through your mind when you find out. Why did it take so long to be diagnosed? How did all the warning signs go undetected? Poor weight gain, salt granules in his diaper, failure to thrive. First you want to blame, but then you learn as much as you can about CF.
They have a test called a sweat test, where they take the sweat off of the skin of a child suspected of having CF. We believe there should be mandatory testing in all newborns for CF. Currently there is not.
Once our son started getting enzymes to help him digest food and absorb nutrients, he started to gain weight and develop just like any other infant. Breathing treatments help to keep his lungs functioning properly and treat infections. He was still small for his age but at least now he was digesting food. At about 8 months of age, the feeding tube was removed from his nose and surgically placed in his stomach. He still has poor feeding habits, he eats small amounts of food and we tube feed him to make sure he gets enough nutrients and calories. He will always be on medication (enzymes for his digestion and a wide variety of medications that enable him to live a somewhat normal life).
Jon's sister Renee co-wrote a song called "Child of Life.” It's about seeing life through the eyes of a child. The emotions that we felt when we first heard the song were so overwhelming that we decided that we wanted to share the joy that our son brings into our lives and the people he comes in contact with. At first, we hoped to make a video telling our story to help educate new parents with what to expect and also some of the challenges we faced once Joseph was diagnosed with CF. Our relationships, spiritual beliefs, telling our family, deciding to have another child. But the more we started talking, the more we realized this video is for anyone and everyone who doesn't know about CF, but would like to. This is our personal story about our son.
Our son can do anything any other child can do - it just takes him an extra breath to do it.
Click Here to View the “Child of Life” Video
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