A little over a month after A & S were born, a couple we went to high school with welcomed their second child. I remember seeing a FB status his mother posted a few months later, asking for prayers for their sweet boy. There weren't many details, as they had no idea what was going on but they knew something was off. I continue to follow their story, keep in touch with her and be of some support to the family.
I have asked her to share their journey with you all...
Kayden was born April 22, 2013, he was a perfectly healthy 7lb 11oz boy, or so we thought. Within a few weeks we noticed he wasn't meeting certain milestones but we kind of pushed it back thinking he was just developing a bit slower than his peers. The beginning of June I took him to the minor ER with a rash. Needless to say, they noticed his breathing and "floppiness" right away. We left there and went straight to Children's Hospital in OKC where we were admitted for 3 days. Numerous tests were ran. Finally, the last day we were there they completed lab work to test for SMA. What's SMA? Spinal muscular atrophy. My husband and I had never heard of it either. We discharged immediately after labs were completed and we were told they would call us in a few weeks with the results. I received a call a week later asking us to bring Kayden back to Children's Hospital. June 18th we seen the neurologist, who gave us the heart wrenching news... SMA Type 1. " Now go home and love your son, type 1's don't see their first birthday " my heart sank! Our world was upside down.
Type 1 SMA is the most severe form of the disease, symptoms are present before the age of six months and these children never acquire the power, the strength or the endurance to sit independently, to crawl or to walk. The greatest threat to their life and limbs are respiratory complications. We found out really quickly just how SMA takes over your life. Within a couple of weeks we had new machines, cough asst, pulse ox, bi pap and a suction. By August we were in surgery for a mickey key( feeding tube) and Kayden lost the ability to swallow shortly after that. October he got a cold which put us in the PICU for 7 days. He was so weak, he could no longer cough or control his secretions. Even through all that, he still smiled and laughed! In December we were hit really hard... RSV! Kayden coded on me the morning of December 12th and I thought I lost him. It's a feeling no parent should ever have to experience. An ambulance picked us up from the house and took us to Children's Hospital. He was immediately intubated with a collapsed lung and heavy RSV. He was intubated for 3 weeks and we spent Christmas and New Years in the hospital. We were eventually told we couldn't leave if we didn't trach Kayden and put him on a ventilator. So we agreed, Kayden kept smiling! After the trach surgery it was 2 more months in the hospital, including a significant amount of trach and vent training.
We were finally able to bring our baby home in March of this year and in April he turned ONE!! It was the most amazing thing in the world, a milestone we weren't sure we would see. SMA was a new word in our book and it's by far not the last thing Kayden will teach me, he teaches me something new every day. He amazes me in every way possible and is by far the strongest 16 month old I know... even though every day is a struggle. Whether it's germs or allergies, it all effects Kayden's breathing in more ways than one could possibly imagine. Even the simplest things to some, like the whole get up and go is long gone but every day he is here is worth the blood, sweat and many tears shed. As long as he keeps smiling, we will keep fighting! I encourage you to educate yourself on SMA and help spread the word. We appreciate all prayers, good thoughts, etc.
If you are interested in following this families journey with SMA please visit them at K.O "Kayden Owen" SMA.