ABOUT COLE

Cole was born on November 13, 1997.  He weighed 7lb. 13 oz. and was 20 inches long.  We knew Cole was a very special baby, but what we didn't know was how extra special he would be to us.

When Cole was 5 weeks old, I made a doctor's appointment because he wasn't as strong as some babies and he seemed "floppy".  They knew right then and there that something was seriously wrong.  His pediatrician referred us to a neurologist that we were to see the following day.  He went through many tests that day, but they were not able to actually determine what was wrong. 

Cole was baptized the next day.  We had many family and friends with us to help celebrate a very joyous day, but also for support following the news that we had just been delivered.

The day after baptism, while Cole was eating, he began "choking" on his formula and then quit breathing.  Cole's daddy gave him CPR and then called 911.  Cole was brought to the hospital by ambulance.

December 21, 1997, this began our journey with Cole.  Cole was admitted into the hospital for further tests.  A feeding tube was inserted to prevent any further distress during feedings.  Cole "maintained" for the next day or so.  Then he began having many episodes of low oxygen sats and turning blue.  At this point, the doctors decided to intubate Cole.  They decided to leave him on a ventilator until all the tests came back and we knew what was exactly wrong.  DNA tests were taken a few weeks later and the diagnosis was Spinal Muscle Atrophy-type I.

We were devastated to say the least, but we knew we had to be there for Cole and we would be. 

At this point, the Doctor's told us we had to make a decision to keep him on the ventilator or to take him off.  What a decision!!  The decision was not a hard one.  Seeing Cole's bright blue eyes and his wonderful smile helped us make our decision. 

On January 15, 1998 Cole went in for surgery.  He had a tracheotomy, gastrostomy and a nissen.  He went through all three surgeries with flying colors.  We were so proud of him.

We were finally discharged from the hospital on February 10, 1998.  We came home with our son, but also with a lot of changes.  We now had 24 hour nursing in our home and many different specialists and professionals were now involved in our life.


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