All About Ryan
Ryan Andrew came into the world on March 19th, 1996 at 5:55 pm. He was 6 pounds 13 ounces and 19 and a half inches long. Everything seemed normal and he seemed like a perfectly healthy baby boy. I was a young single mother of 19 and Ryan was my first baby and very unexpected. I took my baby boy home to my parent's house which would be our home for the next 3 years.
Several months went by, and this being my first child, I didn't see much reason for concern when Ryan wasn't doing all the things other babies his age were doing. When I would take him for his monthly checkups, the nurse would ask me, "Now is he attempting to crawl yet?", "Is he rolling over?". My answer was always no. By the time Ryan reached 6 months of age, we all became very concerned. He wasn't attempting to crawl and would not stiffen his legs or pull himself up with his arms. When put into a sitting position, he would topple over at the slightest nudge and couldn't catch himself. There were many things that other babies his age were doing that he just wasn't doing.
Finally, when Ryan was around 10 months old, our pediatrician ordered some tests. We took him in to see a neurologist. He performed several tests on Ryan and they were difficult to watch. After eliminating other disorders they did a blood test for Spinal Muscular Atrophy. We had to wait 3 more weeks before we finally heard that awful news. Finally we got that terrible phone call and the words"your son has Spinal Muscular Atrophy." Because of his age when he was diagnosed, they said he probably had type 2. We were told that he would never walk and would most likely not live to be 3.
After Ryan's diagnosis, we decided it was up to us to give Ryan the best life possible and that we would do everything we could for him. Ryan learned to drive a power chair at the age of 18 months and got his very own power chair at the age of 2. He was delighted to have some independence and to be able to move himself through space all on his own! We enrolled him in a special preschool. Ryan is very verbal. He loves to talk and ask questions. He is as smart as a whip and is a very funny little boy.
We managed to keep Ryan healthy and well until December of 1999. This was Ryan's second bout of pneumonia and we almost lost him. He stayed in ICU for 8 days where he had to be intubated. Either my mom or I was always at his bedside and we never left him alone even to get something to eat. Days passed and Ryan's condition slowly began to improve. They decided to remove the breathing support. As they began the procedure, something was not right. Ryan's heart rate went up and his oxygen numbers began to dip dramatically. A few seconds seemed like an eternity as the nurses and doctors rushed around his bedside trying to help him. I looked down at my helpless little 3 year old as his lips and face began to turn blue. The nurses rushed us out of the ICU room so they could work on him. The last time I saw his oxygen numbers they were all the way down to 30 and alarms were sounding. My mom says they actually went down to zero.
We waited in the waiting room for what seemed like days. We could only imagine the worst and that we would never see our little boy alive again. Finally, after several minutes, a nurse came to get us. We walked back into the room and saw Ryan resting there peacefully. We waited for him to wake up. A few hours later a nurse came in with a special tumble forms chair to place him in. Ryan sat there for a couple hours and just looked straight ahead or at the ceiling. He was unresponsive and even though his eyes were opened, it looked as if he couldn't see any of us. Of course we were now worried that something else was terribly wrong with him. We were later told that Ryan was in a state of shock from what he had been through and he was going to be okay. After things settled down a bit, we were told what had caused Ryan to crash. When they were extubating him, a mucus plug lodged in his airway cutting off all air into his lungs. We came very close to losing him that day.
A couple days later, Ryan was moved upstairs onto the pediatric floor and was soon acting like his old self again. Finally after almost 2 weeks in the hospital, we got to bring our little boy home with us just 2 days before Christmas. It was the best Christmas present any of us could have asked for.
After that awful experience, Ryan has had many more pneumonias and has had to be hospitilized 11 more times. None of them have ever been quite as bad as December of 1999. We were able to get all the equipment he needed, including an InExsufflator, Vest and Suction machine to add to our Oximeter, Nebulizer, BiPAP and Percussor already at home. Ryan is on the NIV protocol and is doing well. In July of 2002, he had a Gtube placed. Since that time, he hasn't had to be in the hospital even once and has gained 20 pounds!
In May of 2001, our family enjoyed an amazing trip to Disney World by the Make-A-Wish foundation. It was an incredible week. One I'm sure none of us will ever forget. Ryan was treated like royalty and it was an amazing experience!
Ryan is now 7 years old and is the proud big brother of his new baby sister, Jorie. Jorie was born in October of 2002 and is SMA free. She is a delight to have around and Ryan is really enjoying having a baby sister to help take care of.
I have learned a lot over the past 7 years about life and what's really important and about a disease that I never would have chosen to learn about. Spinal Muscular Atrophy is a terrible disease and we pray that there will be a cure in Ryan's life time. We pray that no more children will have to suffer from this terrible disease and that a cure will be found soon!