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  • May 22, 2016 at 10:32 am #101

    March 23rd, 2015
    A date that is becoming just as significant as bearing my son or losing him. This was the day that started us down the chaotic part of getting Aiden a diagnosis.
    I had already been wondering what was happening with Aiden from January on.
    After we got through New Years Eve and brought him back to school and Nick and I went back to work. He was not his normal happy self.
    After multiple visits to his doctors office that told me it was normal baby behavior. I did not want to bring him back. I went on a search to find him a different pediatrician and with fear they would tell me that it was “normal baby behavior” did not neccesarily rush to get him to the next place. We were planned to just go on his first birthday and with a push from family members got an appointment sooner.
    My worst fear was unraveling in the doctors office, when I watched the doctors face as she took one look at Aiden I knew, with out her even touching him, that things were not going to be good.
    At the end of the visit we were referred immediately to a Neurologist- not a take the referral and set up an appointment. It was an I already called and they are waiting for you type of appointment.
    We went down to Minneapolis and sat with the neurologist specialist and after a short consult and no questions quite answered, sent to get blood work done at Children’s Hospital. The main concern the doctor had was if his muscles were under stress, and this blood test would be an indicator of the next steps we would take.
    We went in the “dungeon” of Children’s hospital. Which Children’s is a beautiful facility, however getting bloodwork and imaging you had to go to the basement and it was quiet and creepy…
    I had to hold my baby while they took a lot of blood from him for testing. It was probably more stressful for me than it was for him. He took it like a champ. This was one of those moments that would show me that I had one tough warrior in my presence and he would from this moment on teach me more in the days/months to follow than I ever expected.
    A few days later I got the first call with results… The Dr. believed Aiden had Muscular Dystrophy. He had elevated CK levels well beyond what the norm was. His muscles were in distress. There was no cure for this disease. I had to get referred to yet another specialist- a muscular neurologist. I was referred to look at the muscular dystrophy website. (www.mda.org)
    The phone call was done, and I was sobbing at the table in the break room at work, trying to pull myself together to figure out how to leave work without making a scene. I had to just breathe through my tears, let the manager know I was leaving and make my way home.
    In a blur I called Nick, my mom and dad and his parents. With in 30 minutes we were all at our home crying and figuring out what to do. When I say this, I mean, how do we look at this initial diagnosis and figure out how to stay a normal family. Aiden was our precious baby it was our job to protect him, he couldn’t do it himself yet.
    We decided that Aiden was going to need more help then others but we would do what it took to continue to live our life. Our families agreed that was best.
    Little did we know that time was not on our side and would come to find out it was more than just muscular dystrophy…