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 they both go back in two years. Since he doesn’t have his official diagnosis, they said our insurance probably won’t cover the testing, plus he is pretty young so they don’t expect to see any abnormalities yet. They said they really didn’t expect to see any abnormalities in either of the boys at this point, generally they don’t expect to see anything until around the age of 10. The point of our visit Monday was to get a baseline of how things look now, so then every two years we can compare and see if there has been any progression.
We were in the clinic for almost 4 hours! While it was difficult to keep two little, rambunctious boys busy and out of trouble for that long in a small room, I have been very impressed with the care we have gotten so far at Children’s Mercy. I really liked the cardiologist we saw, Dr. Bingler. He took his time and explained how MD affects the heart, and his excitement about all of the drugs that are about to become available to delay the progression of heart failure when/if it begins. He was also very hopeful about the drugs that are currently being tested to help treat the muscle breakdown in MD in general, which could also help protect the heart. He said unfortunately there is no way of predicting what kind of affects MD will have on my children and their hearts. He knows kids who have stayed ambulatory until adulthood but experienced problems with their heart and respiratory system, and there are others who end up in wheelchairs, but continue to have very healthy heart functioning.
In the meantime I need to focus on keeping the boys active, helping them make healthy food choices, and making sure they get a good dose of Vitamin D and Calcium. Outside of that, I realize it is completely out of my control. What this disease may look like in my children, how quickly it will progress, whether there will be a good treatment available in their lifetime, etc. is all up to the big guy upstairs and I am trying my best to be trusting and patient. The last couple of days I have been holding onto the message I heard at church this Sunday, because it continues to speak to me as we walk this path. God never promised us that this life would be easy. He did promise that if we walk alongside Him and trust Him, there would be great joy at the end of our journey.
I hope I don’t sound too preachy or anything when I share this. I just want to share what helps me and my family get through this difficult season. My faith and trust is far from perfect, but this is what I need to focus on to see the big picture, and not focus on every scary, negative detail that we face now or that could come our way. We truly appreciate the continued thoughts and prayers sent our way. I can’t even begin to tell you how much it means to us to have so many people reading this blog, asking questions, and showing their support for our family.
 |
| The doctor is in! |
 |
| Look out doctor, he bites! |
Team Strathman 
Mindy: Praying for you all. Faith is the best thing to get you through this! Love, Kim
LikeLike