June 30, 2021 "One last stitch"

 It's been over a month since our last post-op visit with Dr. Damitz, plastic surgeon. She said the few stitches that she saw under the skin would come to the surface and come on out by themselves. Most of them did just that, but one stitch actually had a surgical knot that they did not clip so it would not come out by itself. It's not surprising that they missed a stitch because they completed four surgeries on his back with horizontal AND vertical incisions in a desperate attempt to keep it closed. His skin had grown over the stitches so deeply that she refused to dig in fear of causing damage and opening it back up. Michael and I decided NOT to put him to sleep for this one stitch to be removed. He would have to be held down either way, so we chose the lesser of two evils. 

We tried to prepare Rayden for this day by telling him removing the stitch was like getting a haircut. He would have to be still and it doesn't hurt. He seemed to understand and was talking to Dr. Damitz about what she had to do. He was all smiles until she asked him to hop on the table. Michael put him on the end of the table with his feet dangling. He wrapped his arms around him while Rayden buried his head in Michael's chest and began to cry. Before he could even take a second breath Dr. Damitz had already removed the entire stitch. They tried to show Rayden so he would calm down, but he was having none of that! He seemed thrilled that all the stitches were finally gone and even hugged Dr. Damitz. Maybe we can FINALLY move on from this horrific experience. 

I'm not sure Rayden will ever go back to UNC without taking a trip to the 7th Floor to say hello to his nurses. They took such good care of him. They all hold a special place in his heart. He marched right up there with his walker like a boss! When they opened the doors Roxanna came running and screaming Rayden's name. She was followed by Toni, Liz, and Sarah. It was priceless. Of course he had to see Monica and Gina as well. He even saw two of his floor doctors, his physical therapist, and the custodian, Mrs. Patricia. They were all talking about how much taller he was and how well he looked. One of the doctors even mentioned how she saw his picture on a flyer advertising Wonder Connection (the science kits he loved). When I say this boy is a celebrity, I mean it, haha!! 

June 12, 2021 "First T-ball game"

Rayden enjoyed every minute of his first t-ball game. He had the biggest smile on his face the ENTIRE time! I know it was challenging to pull the walker over the thick grass and bumpy terrain from base to base, but he certainly didn't show it. He was thrilled to have so many loved ones there to watch him play, but he said his favorite part was receiving the Little Debbie oatmeal cream cake from his coach. It doesn't take much to make him happy. 

       

 

May 29, 2021 "WalkOn Floor Reaction AFOs"

We have been so excited to receive Rayden's new WalkOn Floor Reaction AFOs made from carbon fiber. They are light weight and super strong. They don't wrap all the way around his legs like his old Cascade AFOs. This should prevent so many pressure sores and the constant rubbing on his tibia bone that sticks out. They are made from strong carbon fiber so he cannot overpower and bend them like his Cascades. There is a strong calf cuff on the front of his leg. This supports his tibia and prevents him from bending his knees to balance, allowing him to stand up so straight and tall. The constant struggle to balance was putting so much pressure on his knees which could cause damage down the road. They will help with his independence because they are so much easier to put on. They fit right into the shoe so all he has to do is put the shoe on and wrap the two straps around his legs. Bob warned us that it would probably take him a while to get used to walking in them, and things may get worse before they get better, but Rayden surprised us all. He was walking in them within 5 minutes! Bob told him these kind of AFOs were only made for BIG BOYS!