October 14, 2016 "Twister Cables on the HULK!"

Oct. 14- (Friday afternoon) Rayden's twister cables finally came in. Now these are a contraption like none I've seen before. There is a wide, white belt that hooks around his waist. This belt has a wide piece of metal inside that attaches to the metal cables that go down the outside of his legs. These cables attach to his AFO's. There are rivets at the knees and hips allowing him to bend them. His belt, cables and AFO's are one giant piece now. Mr. Bob gave us a little tool so we can disconnect them if something goes wrong. He called it the "escape key".

Rayden didn't seem to like them at all Friday afternoon. He continuously pulled on them and cried. We just tried to distract him and redirect his attention. He ended up wearing them the entire afternoon until bed time. It was amazing to see how quickly they turned his toes towards the front. He even crawled with his toes pointing down instead of dragging on the sides of his feet. He can't 'W' sit in them either! So the cables have fixed several issues already! He didn't stand up the first day too well. I guess he just didn't trust these new things on his legs.

One of my biggest challenges was how in the world to change his diaper with these cables on. Just imagine this difficult situation for a minute...!!!

Oct. 15-(Saturday) This was the day of Rayden's B-day party. So we really didn't get to work with him on standing with the cables too much. But he did wear them all day without pulling on them so that's a win! There has to be an adjustment period, ya know.

Oct. 16-(Sunday) We stayed home and really worked on Rayden standing with his twister cables. He didn't seem to like them at first but he soon realized that he could stand without his knees buckling underneath him. It was amazing to see his self confidence soar through the roof. He is still pulling his entire body to a standing position with his arms. He's not using his legs to stand which is why he has such large chest and arm muscles. He is working on these issues in PT. When he pulls himself up to a standing position his feet are very far away from his chest. We are having to advance his feet forward so he can stand up straight. I'm sure he will get the hang of this very soon.

When taking the twister cables off Rayden to get ready for bed, I noticed blood on his left sock. When I took the sock off it revealed an open pressure sore!! I was so upset. When we examined the cables we realized they were loose. They are not suppose to move at all! The left AFO was actually twisting around and around, which means it had been moving and rubbing on his little foot all day. Rayden has no feeling in his feet so he was unaware of this happening.

Oct. 17-(Monday) Of course we used the "escape key" so Rayden could wear his AFO's without the cables attached. He cannot go all day without his AFO's on his feet. He will try to stand and this could easily break his ankles. I called Mr. Bob and he wanted to see him right away. After another two hour drive to Wilmington, Mr. Bob realigned the cables and tightened them well. He said Rayden must be really strong to have overpowered the cables. I have no doubt this kid has super strength!!

Oct. 17-(Tuesday) You've got to be kidding me! After one day of physical therapy Rayden's twister cables came apart!! Yes, apart!!! Mrs. April, the baby sitter, reattached them with the special tool 8 times before I got home. Upon hearing this I immediately took them off only to find that one was higher than the other and one was twisting around and around. They were not tight and were definitely not lined up correctly!! This kid is a HULK!!! Of course, I called Mr. Bob right away. He was so shocked that Rayden could do this. He felt so bad that I had to take off work AGAIN so he agreed to meet me on Saturday to fix his cables. That was wonderful!!! The only problem was that Rayden wouldn't have his cables for three days.

Oct. 22-(Saturday) We met Mr. Bob and his wife in the office to fix Rayden's twister cables. He said he has always just hand tightened the screws on every patient he has ever had. He has never had a child overpower the cables. Here again, Rayden doesn't follow the text books! Mr. Bob decided to torque the screws this time. If "HULK" breaks his cables again Mr. Bob is going to weld them together!

Oct. 23-(Sunday) One day with the cables actually staying on correctly and look at what Rayden can do! He has been able to cruise along the sofa sideways like a crab walk but he has NEVER taken forward steps. In this video you will see that Rayden wants to take his paper towel to the trashcan across the room. He had already done this three times that morning! Michael is holding his hand for stability and I am advancing his feet. He picks up his left leg but his right leg is super stiff so I am advancing it for him.

Rayden has had such a rough mountain to climb to be able to hold his head up, sit alone, crawl, stand, take steps, and be vertical like everyone else. He is now 22 mo. old (almost 2 years old). I realize his mobility is an entire year behind children his own age, but his determination speaks volumes above the rest. Things that come so easily to others, Rayden has to work extra hard to accomplish. And he does it all with that amazing smile! :) I can't even place into words how proud we are of his accomplishments. When he takes his first step without support I believe I am going to just die!