Friday, September 11, 2009

Meet Colton

Colton was expected to be a healthy baby boy--despite mother's early intuition that there was something not right. Here's where our journey gets exciting. Colton was born by emergency c-section. When he graced us with his arrival he required ventilation assistance. Day 2 Through low blood sugar, concerns of apnea, and increased work of breathing- he was transferred to NICU and diagnosed with sepsis/jaundice. He was home for almost 2 weeks and we noticed he was turning blue around his hands, feet and lips. We took him to the pediatrician and was taken straight to the hospital. It took over 2 weeks in the hospital to figure out what was causing the problems. Colton was diagnosed with tracheal/bronchial/laryngeal malacia (severely floppy airway) and some other medical conditions some we found out from newborn blood tests. From the time he came home from NICU we called him squeeky wheel- because he made so much noise...eating and breathing. We later found out his airway was flopping closed, that is why he was turning blue. The doctors told us that we were very lucky he was still here as his airway was a severe case of malacia. It could've easily been an unfortunate SIDS case. They put Colton was put on Bi-PAP to be on around the clock unless he was eating. He couldn't open his eyes with it on and it never fit well. After a week and a half of being home his heart rate dropped to low 30's. We took him to emergency room and after a week of trying to find the right place for treatment was then transfered to UNC children's hospital. He didn't come home again for two months. He got my trach at 12 weeks old and a ventilator. It is then my mom set up a website for me Colton got a feeding tube at 6 months (after repeated admissions to hospital.) In September,2008 he was diagnosed with an immune deficiency and December with a bone disorder. In January he got glasses, and around march began growth hormone shots and immune infusions. Colton has also been diagnosed with having central sleep apnea so he uses a ventilator when he is asleep. Last week, he got a long term IV for IV antibotics and for blood access because he is so hard to get IV's in. Colton has a complex list of other disorders that no one can connect but everyone feels are connected. Doctors diagnosed him with an autonomic nervous system problem but can't pin point it yet. We've been referred to a specialist out of state and hope they can help. His therapists are so proud with his amazing progress. Colton is a fighter in every sense of the word. He loves his family, chewing on his pacifier, and his blue soft snuggly 'puppy' and now his new blanket. He is determined to teach anyone and everyone about life about living it to the fullest.


  1. simply adorable!!! what a fighter and what a courageous and wonderful story you have to tell. God Bless you!!

  2. It looks like the blanket matches well with his puppy! How wonderful! I hope the blanket brings him some comfort.

    What an amazing little boy. He has been through so much. He will always be in my thoughts and prayers.

    From a Grandma called Mimi