The story of Jessica
For 14 years we had been what seemed to be the normal all American family. There was mom, dad, and two little minis running around. For over 3 years we tried to have a third but it just didn’t seem to be in the books for us. Once we had finally come to terms with the fact we may not be able to have more children it finally happened. In 2016 after a Christmas vacation to visit out of state family we came home to revel I was finally pregnant. This was not like any of my other permanencies, things did feel off for a bit. I was always quit large in the belly with both the first two so that was not out of the ordinary, but this time I carried a lot of extra water, I was way more clumsy in fact at about 26-27 weeks I had a fall that caused contraction through the rest of the pregnancy. No one suspected much for the baby as everything else seemed to be normal. Than came his day, it was Aug. 21st 2017, while everyone else was watching the solar eclipse I was watching as the doctors pull our little star boy out of me. The surgery was awful, I thought I would die right there on the table, but that’s a story for another time. Though I’m laying on this table half out of it and fighting to breath, I hear my husband yell, “what’s wrong with his feet?” and doctors telling me if he cant breath better on his own soon he will be in the NICU. Things never clicked for me till I had a full nights rest (or what I could get in the hospital) I seem him just once after he was born till the next day. Soon as I woke up they did what they had to for me, I was on a mission to see my baby. even after making it to the NICU I only got to see him for a moment I would have to come back down for his feeding time. The second I walk in to his room for the second time I said give us skin to skin time, I had heard that it can make miracles happen and we needed one. Soon as we did our skin to skin time he started to improve, a week in the NICU he was ready to come home, but still had no answers as to what he was dealing with. He was going though casting of his feed and hands surgery and no one had answers yet. Finally on Feb 14th, 2018 we had his blood work done and by March we knew he had SMA. Such a scary time as the doctors are telling us our baby wont make it as long as we would. Appointment after appointment I keep fearing the worse, but this little hero was making all the doctors liers. He was hitting milestones no one thought he would at least not till later on. He is now 3 years old, he does wear AFOs and that’s a challenge on its own. He has core issues and poster but my baby is walking. He is not vented at this time or Gtubed. We count blessing everyday. From the outside he looks like many other 3 year olds but inside he is fighting a battle of his own. He will have more surgeries though his life but we do the best we can to help prepare for them so he can come out better than expected. He is so strong and does his best. He doesn’t live life on cants but Ill show yous. No one else in the family has had this disorder, it was simply a mutation that clearly we needed to be introduced to. We have pushed him to be the best him he can be, and really does show. I cant wait for the rest of the world to meet him and learn his story as he grows. So world say hello to Mister Rollo setting his bar for SMALED2!!!