One morning last week we were getting everyone ready for school and work, and experiencing the usual craziness that comes with getting 4 people out the door on time. Roman was playing with our dog Nikki in the living room while Mark, Chase, and I were in the kitchen chatting, assembling lunches and eating breakfast. …
Vacation and Tomorrow
How many kids get to spend their birthdays on the beach? Chase turned 6 on Labor Day this year, and we just happened to be on our family vacation in Destin, FL. We had the best time! Roman got to fly in an airplane and see the ocean for the first time and he loved …
Chase’s Arm, Well-Checks, and Prayers
Chase just finished a full week of Kindergarten and has done pretty well. As most of you know, he had to start the school year off with a broken arm. This has made the transition to full days of school a little bit challenging for the poor guy, but the staff and teachers at his …
Eight Years
We were sitting in my car Sunday morning, both of us dripping wet. We had been standing outside at Smithville Lake for 2 hours, since 6 am that morning in the pouring rain, waiting to find out if the weather was going to cooperate enough for me to do the Cowboy Up Triathlon this year. …
Roman’s Genetic Testing Results
I got the email yesterday afternoon from DuchenneConnect.org confirming that Roman has the exact same deletion as Chase, exon 45-51. That confirms that he does have Becker's Muscular Dystrophy. We had assumed this since April when we got his CK results back showing muscle breakdown, but it was still a hard pill to swallow getting …
Our first visit with Cardiology
Chase and Roman had their first visits with the Cardiology Clinic at Children's Mercy on Monday. They both looked and sounded healthy. Chase had an EKG and Echo-cardiogram and both tests came back normal. They just did an exam on Roman this time, and then we will have the same tests done on Roman when …
Genetic testing update
I just wanted to give an update since we had been waiting on Roman's genetic test to confirm his diagnosis, and my genetic test to confirm whether or not I am a carrier for the Becker's gene. Unfortunately, I received a letter in the mail from our insurance company saying they Will Not cover Roman's …
Chase is Going to Kindergarten
Chase started Summer Kindergarten Adventure this week, it is so hard to believe he is officially a Kindergartner. I'm thankful that the school district does this little summer introduction to Kindergarten for the kids because it has been quite a transition, for everyone, for Chase to go from half days of preschool, to full days, …
Six to Eight Weeks Later
It's hard to believe that it has been about eight weeks since Chase's official diagnosis, and about six since finding out about Roman. Life has gone on though, the boys are the same ornery, loud, crazy little monkeys that they have always been. There are a lot of days when things are so normal, I …
Roman’s Appointment with the Muscle and Nerve Clinic
This guy cracks me up every day. I told him he needed to get dressed because he was seeing the doctor in a few hours and this was the outfit he picked out. I decided to just let him wear it because he was so worried about getting a blood test that it dominated his …
Continue reading Roman’s Appointment with the Muscle and Nerve Clinic
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