Today was our clinic day. It is also World Duchenne Awareness Day. I have been struggling to determine what to write so I’ll start with the easier stuff. Our clinic day went really well. Cade is staying pretty constant. Walking and getting up off of the floor are starting to become a little more difficult for him but other than that all other reports were good.
We are so very fortunate that Cade has really great numbers for cardiology and pulmonology. Those are very scary things to think about so I don’t have to think about them anymore for the day or even the weekend although it is always in the back of my mind.
The dietician visit is always short as we are very fortunate that Cade likes a wide variety of foods. They usually just stop in to ask if we have any questions and if Cade is having any swallowing issues. Another easy check in for his list of providers for the day.
We are struggling now with the fact that we have been noticing Cade’s reliance on his wheelchair more. He has started requesting us to take his wheelchair into places we wouldn’t have thought about 6 months ago. So now he is really wanting to get a power scooter. While I know the benefits of it, I also know that he is only 10 and sometimes safety awareness is not as high a priority as it should be. Plus I just keep thinking that this will just be more big equipment for us to manage. Sometimes I think we almost need a garage just to house his equipment.
The neurologist also suggested a neuropsychology test for the next time we come out. This would probably be on a day other than his clinic day so that would mean more days missed from school along with another 5 hour day at the hospital. But this test would be very useful for Cade to get through his school day a little easier. So in 6 months we will have a cardiology visit, a neuropsychological test and our neuromuscular clinic day. I’m exhausted just thinking about it!!
By the time we ended our clinic day, we had 2 boys who were not behaving the best as we are all tired. So we are back at the hotel taking it easy for a bit. Not sure what we might be up for later but we will see how their moods are after resting.
We were so blessed by the messages with pictures of those wearing green or their Cade’s Journey shirts. We were showing them off to every provider that came in! We could feel all the love and support and we know that it made this day better for all of us. We love you all so much.
I got to thinking about how last year at this time I didn’t know there was such a thing as World Duchenne Awareness Day. I was still fumbling along trying to figure out our journey in this. We hadn’t really even publicly acknowledged Cade’s diagnosis.
One year later and we even managed to put a few plans in place for this day. Our hope and goal is to spread awareness of this disease that I didn’t even know anything about 18 months ago. I had heard of it but that was it. Nothing more, nothing less and not interested in researching it. I am hoping that next year I will be able to put a few more plans in place to spread awareness about this disease that I am now becoming an expert advocate in.
I will try to post more if I think of anything I may have forgot to update on. I am now going to lay back and do a little reading and relaxing.
P.S. I never thought I would consider the use of a selfie stick but after trying to take one of the four of us today, I might have to look for one!!