Day one of clinic days is in the books. Cade had his echo and EKG done and everything looked good.
We he a really great technician for the echo today and it went really fast compared to last year. We then saw the doctor and discussed the results. While everything looked good we discussed adding another medication in as a preventative measure. For a family that has never really had to take medication in a regular basis this has become a huge adjustment for us. I finally feel like it has become a part of our routine and we can now add the second medication. We also increased the dosage amount on his first medication.
Then we discussed the need to have a cardiac MRI next year. With DMD, there is a small window in which it is optimal for the kids to have a MRI. Too young and the kids would have trouble following instructions to lay still. Too old and other DMD complications make it too hard to lay flat for any length of time. Because of this we decided to go ahead and start the second medication without waiting for the MRI results and go ahead and have the MRI next year. Cade is apprehensive about it because they do a contrast dye MRI which requires an IV.
This is the view you get when you’ve been granted freedom after a 2 hour clinic visit!
We have appreciated all the prayers and support shown to us today. A little background as to why the shirts of support and this blog mean so much to us. When we first went to Children’s Hospital for our initial diagnosis appointment, we arrived there early. We went into the cafeteria to eat lunch to the best of our abilities that day. While we were sitting there, families of patients came through the area and all about. Many of them were wearing shirts that said Team (insert child’s name).
Cade was really fascinated by all the “team” shirts and asked me if he would have a team. I determined at that point in time that however I could make it work, we would have a Team. And I prayed about it and Brent and I looked into Team Cade shirts and it still didn’t seem quite right. So I continued to pray and wait for a solution.
The idea of the blog came about not long after that but I fought it hard. Never once have I ever thought about writing, especially for anyone to read it. But the nagging feeling that this was the answer I was praying for kept coming back to me becoming a blogger. I finally gave in and started the blog and then with that came the idea of needing a logo. And from there came shirt, hats and buttons to be worn to show support for Cade.
So all this work and calls for wearing shirts is for Cade to feel like he has his Team. Please continue to pray as tomorrow Cade has a long day ahead of him with the neuropsych test. We are to plan on being there 6-7 hours for it. Luckily a friend sent some great snacks with us so we can take them with tomorrow!