About US

         This has been probably the toughest part of the website to produce.  Where do I begin, and how much do I tell?  These are the questions that I have had to struggle with.  The final answer, I will start at the beginning with a funny story and I will tell as much as I can bear to remember.

          From light hearted beginnings:  Cathy and I met shortly after I graduated from college.  I moved to Wichita to stay with my parents while I looked for a job.  Almost every day, I would call my dad’s office and his secretary would answer the phone.  Same dialogue every day; “Have you found me a job,” I would ask her.  Then; “Have you found me a girlfriend?”  She would answer “no” every day.  One day, however, she answered “yes.”  She recommended that I call on her sister, Cathy.  The rest, as they say is history.

 

          In 1995, Cathy became pregnant with Jacob, our first together.  I still remember people asking us if we knew boy or girl.  My answer was always the same.  “I don’t really care, as long as they are healthy.”  I guess I should have picked boy or girl.  Jacob was born in 1996 and appeared to be healthy.  That appearance only lasted a few hours.  He had Meconium Ileus, a bowel obstruction, which was causing him trouble.  The doctors came in and asked if anyone in the family had Cystic Fibrosis.  We had never heard of it and there was no family history.  The doctors informed us that Meconium Ileus can be the first symptom of CF, but with no family history, it was probably just one of those things.  They would operate to alleviate the problem, we would have to stay a couple days and then go home.  The surgery was unsuccesful, and that is when the surgeon explained to us that the only time he cannot clear the obstruction is when the baby has CF.

         

          This starts a roller coaster ride of highs and lows.  The first information that we learned about CF is that it is a childhood disease and that it is fatal.  This is about as low as it can get.  A couple days later, we learned that there is much more to the story, and that people can and do live with CF.  The next several months provided us with lots of time in the hospital and very little time at home.  Jacob would get very sick then go into the hospital, get well, go home for a couple days and get sick again.  They finally discovered that he had an infection between his lungs and stomach that was never quite clearing up, and it wasn’t showing up on the x-rays because of where it was located.  When it did finally show up, we stayed in the hospital an extra amount of time and cleared the infection.

 

          Next in line came Derek, he was born in 1997.  We knew immediately that he had Meconium Ileus.  You could see how swollen his intestines were through his tummy.  The surgeon came to visit again, but this time we did not do the surgery.  The sweat test came back positive, as we figured it would.  Now we have two boys with CF.  Derek and Jacob were like night and day.  Jacob gets sick often, Derek seems to avoid it.  We believe it probably traces back to Jacob having surgery on the day he was born, whereas Derek did not.

 

          We learned many new routines through the years in caring for the boys.  I even had to give up my pride and accept the kindness of strangers to help us get through.  As anyone with health problems can attest, it is expensive to be sick.

 

Our next big hurdle would be when Jacob was four.  He woke up one morning and complained that he did not feel well.  (This was his usual code phrase for “I don’t want to go to the sitter today.”)  I took him to the sitter anyway.  About two hours into the day, she called to tell me that Jacob was sick, pale and throwing up.  I left work and went to pick him up.  Just another day missing work to take care of sick child, I was wrong.  From the time I picked him up until I got to the house, he became unresponsive with his eyes averted leftward and his head turned to the left.  Training information at the hospital where I worked had taught us the warning signs of a seizure, and this was one.  I rushed him to the doctor’s office and they immediately called an ambulance.  This, his first seizure, lasted over five hours.  Most of that time was under the care of physicians medicating him to try and make it stop.  This was also the first time that I had to use my training to resusitate my own child.  (Trust me on this one, I am glad that I knew how, and hope that I never have to do it again.)

 

          I have rambled on quite a bit about the first few years, so let me end this with a few words about the last few years.  Jacob has not had a seizure in a few years and the doctor is actually considering decreasing his medications.  Both Jacob and Derek have had sinus surgeries to open their nasal passages.  They do clog back up, and I am sure we will have more surgeries.  Jacob and Derek both have feeding tubes which has improved their overall health and helped them to gain weight.

 

          We have another addition to our family.  Braden was born in 2001, he does not have CF.  A look through the eyes of a child; he wants to have CF too, so that he can do breathing treatments and vests like his brothers.  I have to admit, I am so glad that he doesn’t understand what he is saying.

 

          Update - We have just recently learned of our oldest sons diagnosis of Severe Aplastic Anemia.  He was diagnosed two weeks ago. We will be in surgery in a few days for the placement of a Port-A-Cath, so that they can begin ATG therapy to knock out his immune system.  We hope and pray that this will get his bone marrow restarted.  We also are anticipating a trip to the transplant center to begin preparation for the likely bone marrow transplant that will take place soon.

 

          Thank you for reading these ramblings.  Check back periodically, I will edit, and update.  I will clean up the story some, and as time goes by, and God blesses us with more life, there will be more stories to tell.

 

God Bless