Alex was born a healthy baby with lots of chubs and lots of smiles. He met all developmental milestones ahead or on time. Nothing could have prepared us for the fear, heartbreak and devastation that would rock our very young family to its core. Alex had his first tonic-clonic seizure at 7 months old. It was mildly dismissed by ER staff as “a thing that can just happen sometimes with babies.” Despite our pleas and attempts at bribery, he was sent home with a printout about febrile seizures and the advice to keep him hydrated and call 911 if it happens again. The next morning our lives changed forever. Alex had a massive seizure that his tiny body was not strong enough to endure. The fire department got to us first and took over CPR while we waited for paramedics to intubate him. He was careflighted to the trauma center before being moved to the PICU on life support. He was kept in a medically induced coma so that his brain and body could heal and gain strength. We had no way to know if he would survive and the doctors weren’t able to give any definitive answers. We were very young and had very little social support, it was us against the world and we were hanging on by a thread. Chris had to work every hour available to keep a roof over our heads and every minute not at work he was at the hospital to have those precious moments with our son. I spent everyday annoying doctors with non stop questions I knew they couldn't answer and coming up with a million reasons why this was my fault. Our 3 year old daughter suffered. She didn't get to go to the park to play, instead she ate popsicles from the “family resting room” and watched cartoons on a portable dvd player next to her baby brother’s ventilator. Eventually he was strong enough to wake up and we spent the next few years learning all we could about epilepsy while Alex learned how to swallow, smile, and use his right side, hand and leg. Every day was some type of doctor appointment, EEG, physical therapy, occupational therapy and eventually speech therapy once he was school aged. As soon as we felt the medications were just right, another bout of seizures would show us we were wrong. Over the years the intensity of the seizures lessened and the frequency became unpredictable. At 11 he went 10 months without a seizure, at 12 he had his last seizure and at 13 we were able to start the very long, very slow process of taking him off his medication. Alex is now a perfectly healthy, perfectly- perfect 17 year old. We know a seizure can happen at any time but we are so thankful for his health, his life and the support we were given from his neurologist, the neurology staff at Renown Children's Hospital and Benioff Children’s Hospital Oakland. We are especially thankful for the nurses who could somehow guess what I was saying through the sobs and spoke words of encouragement when it felt hopeless. The Occupational and physical therapists who didn’t give up when progress seemed so far out of reach and all the professionals who remembered there was another child watching, and gave her special attention to remind her she is special too.
June of 2020 Callie and Scott got the news of their life they were expecting.... TWINS! at 13 weeks along, they got the news that one twin may have additional complications. While friends and family excitedly asked if they were hoping for girls or boys, Callie and Scott were praying for healthy. At 35 weeks of pregnancy, Callie and Scott were sent over 420 miles away from their home to give birth to their twin boys, Conner and Gunner. Conner was expected to have some possible complications and they prepared for a two week stay. When Conner arrived into this world in Feb 2021, he had other plans. Conner had his first open heart surgery at 8 days old, when his heart was roughly the size of a walnut. Three days later the unimaginable happened, Conner's heart stopped beating. The amazing staff at Sunrise Children's Hospital did successful resuscitation and got Conner's heart beating again with minimal damage to his body. The two weeks stay quickly turned into 3 open heart surgeries, one cardiac arrest, one Cath Lab, and a tracheostomy and G-tube placement. Callie and Gunner stayed at 2 hotels, 2 Airbnb's, one apartment and the Ronald McDonald house with Grandma's help and support. Scott and their older sister Bailey, held it down at home travelling back and forth on the weekends. After 242 days this family was finally reunited under one roof. This family was able to make it home together just in time for the holidays. This is not the last of major surgeries and hurdles for Conner, however, we know he is a fighter and will push through tough as nails as he continuously beats the odds and exceeds expectations.
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