James "Kyle" Miller
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Kyle was born December 2001. He weighed 5 lbs. 9 ounces and was 19 inches long. His mother's pregnancy was not that unusual. When she went into labor and it didn't progress, even with medication, the doctor did a c-section. That's when we found out something was wrong. Kyle was born with what the doctors called a "Blue Baby", not breathing. He was very floppy and was taken directly to the nursery where he was put on oxygen and had a chest tube put in. We were told by the doctor he would not make it through the night. We even had a priest come to the hospital at 2 am to baptize Kyle. He was flown to Georgetown University Hospital in Washington, D.C., which had a neonatal intensive care unit. Once he was there, he was put on all types of machines, still with chest tube in. They didn't give us much hope. We were told he wouldn't make it through the end of the week. He had no suction, was not swallowing properly and was not breathing on his own, but they would do whatever they could to save him.
After 2 weeks and several lung collapses, they told us he more than likely had some type of muscular dystrophy and wanted to do a muscle
biopsy. They also thought it would be better for him to have a tracheostomy and gastrostomy tube placed, as this would get rid of some of the hoses. After the
biopsy was done they told us it was Centronuclear Myopathy, which was a rare form and he would most likely die before his first birthday. We started
researching this disease so we could understand better. After several family meetings with the doctors, we came to the conclusion they didn't know anymore than we did about this. Kyle was at Georgetown University for 2 1/2 months, then transferred to Hospital For Sick Children, where is stayed until he was 6 months old.
Kyle finally came home June 2002, to a room full of equipment: 2 - ventilators, apnea monitor,
pulse-ox monitor, nubulizer, 2 - suction machines ( 1 - stationary and 1 - portable), 2 - oxygen tanks ( 1 - large stationary and 1 - small portable), kid-cart, bath chair, tumble forms chair (to help him sit up straight), and a closet full of supplies. We have had our share of equipment breakdowns, but always come through.
Since Kyle has been home he has been hospitalized 7 times, mainly for possible pneumonias (48 hours stays then sent home with antibiotics). Each time he is admitted to the PICU.
He came home initially on 12 different medicines. He currently is down to 6 medicines: Albuteral and Pulmicort for his lungs, Lacrilube and Artificial tears for his eyes (he has dry eye ducts,
sleeps with his eyes partially open), Robinul to dry up secretions and Creatine to strengthen his muscles.
He currently is on a ventilator only at night and during naps. He has a
pulse-ox on at all times, and oxygen as needed.
He receives physical therapy and special instruction at home since he was 6 months old. He is learning sign language and doing quite well.
He will start speech therapy in June 2004 and will go the preschool in January 2005.
He now is able to sit alone, roll over on the floor, hold his head up straight, push his tricycle around on flat smooth surfaces, rock in his rocking chair without falling over, and swing. He also knows his body parts. He loves to play with other children.
He has developed quite a little personality. Recently, a new nurse was working with his ventilator and it kept beeping, she looked at Kyle and told him she knew what she was doing. He looked at her, smiled and shook his head no! Everyone in the room laughed.
Kyle is now 39 inches tall and weighs 37 pounds. Doctors say he is tall for his age.
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His big sister, Kayla, is a big help with him. She treats him like any other child. She calls him her little buggy (
he couldn't say buddy when he was born).
We recently got a Giraffe Stander, which will help with strengthening his muscles and joints. Now we are trying to get a Gait Trainer (to teach him to walk) and a power chair (to give him mobility on his own) and a Passy-Muir
speaking valve (to help him communicate with others).
Kyle is a fighter! He has proven the doctors wrong in more than one way. His life has not been easy, but he's not going to give up easily either.
He continues to improve daily.
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Kyle's Grandmother Darlene Miller
