It’s hard to believe that 8 months have passed since we learned of Cade’s diagnosis. Even harder to imagine is that it is time to make our trip to Children’s in Denver again. Next week at this time we will be back at the very hospital where our entire world was forever changed.
Next week at this time we will be on our way to Denver to have 2 days of clinic for Cade. The first day of clinic will be new. We will have our first experience with a cardiology clinic. The will do a heart ultrasound and an EKG.
Since Cade has DMD and cannot produce the protein necessary to protect and build muscles, his muscles begin to lose their stability and eventually die. This includes his heart muscles. The dying muscles are replaced by scar tissue which means his heart has to work harder to pump oxygen through the body. Because of this, an enlarged heart is also common with DMD.
We are praying that he will not have any heart involvement at this time. This appointment has me a little on edge. Since we haven’t had a cardiology appointment yet, I fear that we may become “shocked” once again at this hospital.
Then next Friday, Cade will have his neuromuscular clinic day. These are long days and Cade will see a variety of providers. We spend our morning in a room and people come in and out. He sees a neurologist, a nurse practicioner, a physical therapist, and a pulmonologist among many others.
They put a schedule like this on the door to our room so we know who we have yet to see and who has been in already.
We take things for us to do while we wait on providers. Thanks to our Secret Valentine, the boys will be able to play the Nintendo Switch while we wait. This will also help Brent and I out immensely!
I have been preparing myself to have the conversation with Cade about a wheelchair. I think that it is pretty likely that we will have orders to get one for any distance walking. I have become adjusted to the idea that Cade will probably be getting a wheelchair. I am struggling with the idea that we will have to have this conversation with him.
We will get to spend a few days in Denver though just relaxing so that will be nice. We do ask for prayers for stability with Cade. With DMD, he will not show improvement so the most we can hope for is stability and maintenance.
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My prayers continue for you all (((HUGS)))