My name is Logan and I have SMA type 1. I have beautiful bright blue/hazel eyes and love brights lights and ceiling fans. I enjoy big brother Lucas, Mommy, and Daddy reading books to me (especially books I can touch). My theme is dinosaurs. I also love meeting new people, but always go back to Mommy within a few minutes (I am 100% a mommy’s boy).
Logan was born on July 6, 2012 at 5:32pm. He was a healthy, handsome little baby coming in at 6 lbs 12 oz and 19 inches long.
Towards the end of the pregnancy, we were in and out of L&D every other week because Logan wasn’t moving. We would get there, be hooked up on monitors and he would try to kick them off. Little did we know, the lack of movement was SMA starting its course.
At 5 days old, Logan had severe jaundice. We were allowed to bring him home, even though he was .2 away from being hospitalized. We had a box that resembled a mini tanning bed. He stayed under it for 4 days while home health care came every morning to take his blood. In a four-day time span, his bilirubin dropped from 18.2 to 12.1.
At 7 weeks, he was diagnosed with an inguinal hernia and GERD. He had surgery two days before he turned 8 weeks. It went extremely well with only one overnight stay. In regards to the GERD, we now know it was SMA that was causing the excessive spit up, not GERD.
At his two month check up, he was a happy, healthy, normal little boy. We had no concerns other than his spitting up. However, he wasn’t losing weight so we didn’t worry too much.
At three months, we were starting to become concerned that he couldn’t lift his head, but tried not to worry. He had a beautiful smile, loved to chat with us, and could move his head all around.
At four months is when everything started to come to light. We went in for our normal check up and was immediately sent in for some blood work and a head ultrasound. The ultrasound came back completely normal but his blood work had a few abnormalities. The next week we were seen by a pediatric neurologist. He confirmed Logan did not have any reflexes in his arms and legs, but could feel pain. Five more blood tests were ordered but we weren’t expected to get them before the middle of December. The doctor said he did not want to tell us what it could be because there was no reason to over worry.
The day before Thanksgiving 2012, we received the news. Logan has SMA type 1. He profusely apologized for the timing, but needed us to know. We walked straight out that appointment into the pulmonology appointment. The pulmonologist had worked with this disorder before and gave us our options.
At this time, we try to keep both our boys happy and worry free. We are trying to get into St Louis Children’s Hospital as soon as possible. They won’t give us a different diagnosis, however, they may know of clinical trials that will give us a brighter outlook. We will keep you posted!