My Story


Ayden was born July 14th 2006 in Yukon, OK. Healthy baby boy, 6.8 lbs, 19 1/2 inches long, to the proud parents of Matt Trammell and Cortney Studley. We stayed in the hospital the normal 3 days, then we were able to bring baby Ayden home. His life was completely normal, as far as we knew. When Ayden was about 2 or 3 months old we started questioning his development. We took him to his pediatrician and she agreed that he had low muscle tone, and proceeded to make specialist appointments for us to a Geneticist and Neurologist. Our appointments were over a month away from the date that we made them! Thanksgiving was coming up and we were invited to Ayden's Aunt Stephs house in Lincoln, NE. The day we were leaving Ayden had cold-like symptoms, but we decided to go a head and make the 8 hour trip. That night Ayden was very restless, the next morning we were debating on taking him to the ER. Then we had a sign from God..a little orange spot in his diaper that appeared to be blood, we never actually found out what it was but the doctors were not concerned..they were concerned about his respiratory status. Ayden's O2 SATs were in the 80's and his x-ray reviled that his left lung was filled with fluid. He was intubated and flown to Children's Hospital of Omaha. He stayed intubated for two weeks, extubated on the 3rd week, and moved out of ICU to the floor. We had seen all the doctors that we were waiting to see in Oklahoma, they did a wide variety of blood tests. Three days before we were getting ready to leave, we got our diagnosis..SMA Type I. Ayden's Aunt Steph and Granddad Studley were there along with me, his mommy. I couldn't believe what I was hearing, I shed my tears where no one could see me and then tried to figure out how I was going to break the news to his daddy. Matt had to leave while Ayden was still in ICU to go back to Oklahoma to take his finals for school.  Ayden has been in the hospital one other time since then with pneumonia where we stayed in Lawton, and then were later transferred to Tulsa. After getting over his infection he a surgery to get his G-tube put in. They also did what they call a fundo, to help prevent acid reflux and aspiration. Ayden has had many "episodes" where he gets a mucous plug and turns blue. That is where the importance of his medical equipment comes in. He is monitored 24/7 by a pulse/ox, food and meds by tube feeding, bipap to help him breath and rest better at night, cought assist that we use 1-2 times a day when healthy (every hour when sick), he has a variety of breathing treatments, oxygen, and 6 different meds that he gets daily. We have nurses that come in daily 4-6 hours sometimes more. We have just moved from Lawton, OK to Lincoln NE to be closer to family and we really liked Childrens Hospital in Omaha. Ayden has an OT that comes out 4 times a month and a PT once a month.
Matt and I are extremely blessed to have time with Ayden and we cherish every moment. We have learned to cope with the diagnosis and live in the moment.