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! 

October 15, 2016 "Second Birthday Party"

I know it's not officially Rayden's birthday. He was born twice ya know. We decided before he was even born to celebrate his birthday in October instead of December for several reasons.

This year we decided to have a big Mickey Mouse celebration because that is the only thing that Rayden really loves.

I was surprised that so many of our family, friends and loved ones came to celebrate with us. There were a total of 64 people there, if I counted right! Rayden had such a good time playing with his friends, eating 'cake-cake', and talking with everyone. The only thing he didn't really enjoy was everyone singing Happy Birthday to him.

October 11, 2016 "A lot has happened in two months!"

Having a super-busy, little toddler at home consumes all of my time. Not even to mention I started back to work at the end of August so things have been hectic around here. I haven't had time to update the blog as much as I would like. Rayden has had A LOT going on these past few months. Here are the highlights:

1-Rayden has started cruising along the sofa!!!! It's not pretty, but who cares? He is finally getting from point A to point B upright!! Here are three little, short video clips.

2-We FINALLY got a pair of AFO's that will stay on!! (Three pairs in a months time!) When Rayden was getting fitted for these, Mrs. Cathy noticed how his feet turn in even when he stands up. I showed her the video of him cruising along the sofa and she stated that he needed twister cables.

3-We had an appointment with Dr. Cuomo, Rayden's orthopaedic surgeon, at the end of September. She stated that Rayden's tibias are twisted and may need to be broken and replaced during a surgery. She believes the twist is so significant (especially in his left leg) that it is one of the main culprits of causing his feet to turn inward. She also wanted to do another surgery where she places pins in his ankles because the last surgery of removing a portion of his achilles tendons was not successful. She wanted to recast him and go ahead and schedule these surgeries. I disagreed. I showed her how he has finally started to stand and cruise along the sofa. I believe we need to give him some time to develop on his own and see what happens when he can actually take some steps. Every time he starts advancing he has had major regression due to so many surgeries. I believe that if we give him time to learn to walk and THEN do the surgery then maybe he can bounce back quicker instead of having to start all over again! After seeing the video clip for herself, Dr. Cuomo agreed that he is finally making some really big gains and that we should allow him time to get some development under his belt. She ordered the twister cables in hopes that they will help him take some steps without slapping his feet together and help him get some strength in his quadricep muscles. She also encouraged me not to wait too long to do the release surgery because surgery is easier to do when you don't have such a large correction to make. Either way, she stated that we are probably looking at multiple tendon release surgeries over the next several years. MULTIPLE!! WHAT??!!?? I was so angry to hear that because we were under the impression that when she removed a portion of his achilles tendons that they would not grow back. I feel so mis-lead. Apparently the scar tissue from the last surgery has joined the tendon back together and it is pulling his feet inward again. The thought of Rayden having to go through weeks and weeks of casting and surgeries again is just...just... I don't have a word to describe how I feel about that!!!!!!

4- Rayden also had an appointment with Dr. Sanderson, Nephrologist. She believes Rayden's blood pressure is beginning to stabilize but she wants us to continue monitoring twice a week. She also wants him to continue taking the medication another 6 months. On a side note, I wonder if these docs realize how extremely difficult it is to entertain a toddler that cannot get on the floor in such a small space for soooo long. These two docs made us wait forever that day. We arrived at their offices (in the same building) at 1pm and didn't leave until 6pm!!!! I have to say though, Rayden is a champ. And I certainly couldn't do it without my faithful helpers (Nanny, Pamela, Michael).

5-Since Rayden is having such a hard time with the posterior walker, Mrs. Cathy, PT, stated that he needed and anterior one. Therefore I met with a Pacer representative. We ordered a 'cadillac' of a walker. It has all the 'bells and whistles'. It will take about 30-90 days to arrive but I believe once Rayden gets his twister cables and this new walker he will be able to soar. I cannot hardly wait.

6-A dear friend and fellow SB mother, Kathryn Honeycutt, recommended we go see their orthodist in Wilmington, Mr. Bob. Michael and I decided to take Rayden and I think it was a good decision. He altered Rayden's AFO's so he can stand more flat and ordered the twister cables. He seems so sincere, caring, and dedicated. I feel like we will get better service from this smaller facility than UNC because they are super large and cannot possibly remember all of their patients needs. (Just my personal opinion.)


7- Rayden started gymnastics at Elite Gym in Dunn. Of course there are lots of things that he cannot do like other kids his age, but Mrs. Jenny is modifying the circuits to meet his needs. We believe this will help build the muscles in his legs and arms as well as strengthening his core. I was amazed at how well Rayden listened to Mrs. Jenny on his first visit. He seems to absolutely love gym class and we are so very thankful that Mrs. Jenny is dedicating her time to helping our precious miracle.

8-Rayden was having an extremely horrible time sleeping. We couldn't figure out what was wrong with him. He would only sleep 3 hours and then he was up the entire night UNLESS we were holding him in the recliner in his little incline position. We would hold him until he fell asleep and tried to lay him down but the screaming began! This continued all night for several days until I finally felt like something was wrong. This wasn't just a spoiled baby. He spiked a fever and I took him straight to Dr. Chiodo. She did blood work, strep test and a flu test. Everything was fine. She looked in his left ear and it was fine. She looked in his right ear and OH NO!!! She found puss behind his ear drum and he had a red throat. I hate to say it was actually a relief that she found something. If there was no logical reason for the fever we would have to go to UNC to check for shunt malfunction! She placed him on an antibiotic and within two doses he was back to his normal self, and only waking once a night!! That's more like it. Although I am upset that he has his first ear infection, I am joyful that it is not anything serious.

9- Rayden had a speech evaluation this past week. He blew it out of the water!! Two tests scoring 99 and 102!! He can say over 45 words and even some two word phrases. He can make requests for what he wants (puffs, cup, keys, shoes, etc.), answer yes or no questions, can point to body parts (ears, eyes, nose, etc.) and follow simple commands (Put this in the trash. Get your choo-choo., etc.). The only thing he lost points for was naming specific items in a book (which Mommy worked with him for two days and he CAN do that now!!!). The test administrator stated that Rayden scored the highest she has ever seen at his age!!! I would love to go back in time and SHOW those docs that said he would have "no cognitive ability" the power of my God! This child has such a bright future with an incredible testimony.