April 16, 2017 "Easter"

Our little sunshine all dressed up to go Praise the Lord. 

    

 

Rayden and I enjoyed our time together during Spring Break. We played outside in the clubhouse every day. Here is a short video clip of Rayden making animal sounds.  Rayden has been talking about going to see the Easter Bunny all week. After driving an hour and standing in line for another half an hour, I just knew he would really enjoy seeing him. Boy, I was wrong. He screamed like someone pinched him just as soon as Michael placed him on the Easter Bunny's lap. 

Rayden's very first Easter Egg Hunt at Lee's Chapel OFWB Church. He picked up 9 eggs. 

Rayden colored eggs for the first time. He actually did very well and seemed to enjoy himself. Although he hates stickers ON HIM, he didn't mind decorating his eggs with stickers. 

 

We enjoyed Easter Sunday Service at Redemption Hill church.

March 21, 2017 "Clubhouse"

We have really been searching for something special Rayden could play with outside. He can't really enjoy a sandbox because the sand will get in his cable hinges. He can't climb a slide, ride a bike, or chase a ball YET!! But he loves outdoors. He really needed something he could play with/on instead of just walking around. I searched for just the perfect thing and I think I found it. This clubhouse has a bench, grill, bar, sink, stove, doorbell, fireplace, pantry, door, and windows all the way around so Rayden can hold onto something inside and out. We even made a floor out of plywood and foam floor puzzles. He absolutely loves it!!

March 20, 2017 "First independent steps"

April (baby sitter) and Emily (physical therapist) have been working with Rayden on balancing himself on his own without holding onto anything. They call it a "surprise". In this short video clip you can hear me saying "surprise" as he lets go of his walker for a long time at the end!! 

Within three days of the "surprise" video Rayden actually let go and took two steps AWAY from his walker!! He is getting so brave letting go of his walker and balancing himself on his own two feet!

March 16, 2017 "MRI"

We made time to take Rayden to one of his favorite places to eat in Chapel Hill before his appointment. I love this picture.

As a mother of a child with Spina Bifida you are always waiting for bad news, especially at doctors appointments. Even though Rayden has been doing exceptionally well lately there is always a little doubt and lots of worry on a daily basis. I have been so anxious waiting for this MRI. I know Rayden is doing well but I can't see inside his head. Have his ventricles remained stable? Are they over draining? Is the tube clogging? Is the shunt still placed correctly? Does his eye movement have anything to do with his brain? So many things could be going wrong and we just don't know it.

After our last MRI where the technician had to crawl into the machine, I knew Rayden was not going to just lie there. Therefore I asked if I could lie in the machine with him. The technician's welcomed this idea. Rayden was fine until they tried to put the cage over his head so he couldn't move it. He started lifting his head to escape so they rolled a blanket between his skull and the cage so he couldn't move. This, of course, made him furious! Just to give you a visual...Rayden was lying on his back with a cage over his head. I was laying on top of him, on my belly, with my chin in his chest holding his hands down. My elbows were touching the side of the machine and the top of my head was touching the top of the machine. Good thing I'm not claustrophobic. I wish someone could have taken a picture of that. It was the longest 3 minutes trying to sing to him and comfort him. He just kept saying, "I'm finished. Get out!"

As soon as we arrived down stairs in the clinic to see Dr. Elton they were ready for us. After Melody reset his shunt, Dr. Elton stated that his ventricles have not changed since his last scan so this is probably where he is going to stay. Although the ventricles have decompressed, Rayden will always have excess CSF in his brain. His brain is still missing two components: corpus callosum and septum pellucidum. His head is still dolichocephalic. His Chiari II malformation is so minimal that Dr. Elton said it was pretty much non-existant. Neurosurgeons consider anything more than 5mm a Chiari II malformation. Rayden's is only 1mm now. Dr. Elton actually saw Rayden's lazy eye. He said he didn't see anything on the scan that would indicate a problem within the brain causing this. In the little picture (side view of Rayden's brain) at the base of the skull there is a little bit of white. This is CSF indicating a super small Chiari.

In the pictures I have included the white matter in the center of Rayden's skull is Cerebral Spinal Fluid, CSF. In 2014 when he was first born you can see that there was hardly any brain tissue just a massive amount of CSF. Some docs told me he wouldn't be able to see (no optic nerves), walk (spinal cord damage), talk (brain damage), use the bathroom on his own (nerve damage), or have a normal life. He would be so far behind his peers that he would be considered mentally handicapped. The most current scan, 2017, shows a much smaller amount of CSF and a super amount of healthy brain tissue. Yes, he is missing two components of his brain and his head is elongated, but he is proving everyone wrong. Like I've said before, Rayden is a true miracle. He is an intelligent, living, seeing, talking, walking miracle! (just a few of the things docs never believed he could do) God is giving him such a massive testimony to share. Power on, Rayden!!

Dr. Elton had never seen Rayden walk before so he was amazed when Michael opened the exam room door and Rayden walked out and down the hall. He even stated "I have the most adorable patients." Of course, he had to take a picture with him because he released us for another YEAR!!!!


Rayden was so excited he walked all the way down the hallway, through the waiting room, and down the hospital welcoming area! (That's a very long way!!) Video below.

February 28, 2017 "New cables and shoes, 1st haircut"

Feb. 2- Rayden's cables broke again!! (8th time) This time the coil is broken so we are unable to fix them at home. We have come to the conclusion that the cables are now too short. Apparently Rayden has gone through a drastic growth spurt. Instead of bending at the hinge of the knee, the cable is bending at the coil. The funny thing is that he just got measured for new cables and casted for new AFO's last week! 

Feb. 4- Bob put a rush on his cables and decided to get a larger gauge in hopes that Rayden will not continue to break them over and over.

Feb. 11- A cute video to show how smart Rayden is.

Rayden has been asking us to cut his hair for a while now. It seems to be getting on his nerves. I was really worried about how he would act getting his very first haircut. We thought he would scream, cry, kick, and just throw a fit but MAN WERE WE WRONG!!!! He was absolutely perfect!! 

BEFORE

DURING

AFTER

                       

Feb. 18- Rayden is now wearing his walker stoppers down to the metal!! I'm not going to complain though because that just means he must be walking a lot! Yippee!!

Feb. 19- First Finger Painting. I proudly hung the masterpiece in the kitchen.

Feb. 20- Rayden is the only child at our house so he gets a ton of attention. He loves to talk. Unfortunately he doesn't want anyone else to talk!! Here is a short video clip of how he continued to sing/hum while I was trying to tell Michael about my day. Rayden just didn't want to hear it.

Feb. 21- After only having this walker for two months, Rayden's balance is amazing. He can balance it on two wheels. We call him Evel Knievel (the professional daredevil) now. He actually says "Evel" when he does it.

Feb. 25- Although we had planned to get the new cables, AFO's and shoes at the same time, Rayden, of course, broke his cables and had to get them earlier this month. The new AFO's and shoes didn't come in as quickly so we had to go back to Wilmington. I must say, they were well worth the wait. Rayden has had numerous AFO's in the past molded by UNC orthodists and we have always had to adjust them one way or the other. (insert sticky pads, heel stoppers, cut plastic, etc.) These are the first pair he has ever had made by Atlantic Prosthetic Services in Wilmington (Mr. Bob) and they fit like a glove!!!!! I couldn't believe it. Rayden's left leg is significantly smaller than his right and we have always had to adjust for that, but not this time. They were molded perfectly to fit his feet and legs! Rayden has always had Superman AFO's but this time we decided to change it up. He got the traffic design. I really like them. His new little Surestep shoes are adorable. 

This is Rayden's first pair of 'actual' shoes. He has always just worn his AFO's with grips on the bottoms without shoes. Now that he is walking more he needs more support, not to mention how nasty his socks get when he walks outside.

January 30, 2017 "Pneumonia, eye patch, walking"

January 20- Our sweet, baby Rayden has been fighting double pneumonia and ear infection. He has gotten x-rays, steroid shots, Rocephin shots, two different antibiotics and breathing treatments every four hours. He has lost 5 pounds in a week because he won't eat. It seems to hurt when he swallows. It has been a long, hard road but I'm so thankful we were able to keep him OUT of the hospital.

.

January 28- Rayden used his walker to roam around a store for the first time after a visit with Mr. Bob, orthodist, in Wilmington. 

January 29- Finally got Rayden to wear the eye patch for the entire hour. It has truly been a struggle but we have to do something. His left eye is getting worse. It just wonders around and doesn't line up with the right eye. This isn't happening all the time so we are hoping to correct it before it gets too bad. 

We took Rayden's walker to church for the first time. He walked up and down the isle waving and talking like he was in a parade. Everyone seemed so happy for him and knew that he was a "Walking" miracle from God.

January 30- Rayden had a follow appointment with Dr. Chiodo to make sure his lungs were all clear and he was gaining his weight back after his battle with double pneumonia. He enjoyed walking up and down the hallway talking to people and calling "Chiodo".

January 4, 2017 "Big Boy Bed"

Rayden has been struggling to sleep at night in his crib. He has been getting up about every three hours wanting Mommy or Daddy to hold him. Although he has never tried to climb out of his crib, we thought maybe this was his way of telling us he wanted a 'Big Boy Bed'. The very first night he slept the entire night through!! What a great decision. Now maybe everyone can get some rest around here. 

After purchasing some storage steps, Rayden can even climb in and out of his Big Boy Bed!!

December 25, 2016 "Christmas"

Rayden's second Christmas was wonderful. He actually enjoyed visiting Santa, unlike most children his age. He was eager to open presents and loved everything he received. He is such a joy.

Out of all the gifts Rayden received for Christmas and his birthday, this hand-me-down grill with food was his ultimate favorite.

December 23, 2016 "Second Birthday!"

We celebrated Rayden's "official" second birthday with a family dinner at home. (Party was in Oct.) Alex brought him some Duck's Doughnuts. We let him pick out which one he wanted. He almost ate the entire thing!! He loved playing with his brothers and new presents from Uncle G.

December 21, 2016 "Walking videos"

Dec. 4-(7 weeks with cables)

Looses his balance a little. 

Dec. 11-(8 weeks with cables)

Gets walker stuck. 

Dec. 21-(9 1/2 weeks with twister cables) 

Listen carefully as he says "I'm gonna get you Momma. I'm coming." 

December 16, 2016 "Two appointments"

1-Pediatric Orthopaedic Surgeon

Patients at UNC are always seeing medical students, interns, and residents. We don't usually put a lot of thought into what these people say because they are NOT the actual doctor. But this particular intern, Katie, had some really good insight. After her examination she stated that Rayden's knees do not want to go all the way straight. His right foot turns inward more so than the left. It also has a bone that sticks out which she believes is the end of his fibula. She believes a posterior tendon release surgery is not needed at this time because his dorsal action is really good. She believes his tibialis anterior tendon on the top of his foot may be pulling too tight causing his feet to turn inward. She thinks we need to transfer THAT tendon to a more lateral position to redirect the pull not the posterior tendon.

Dr. Cuomo, pediatric orthopaedic surgeon, actually saw Rayden walking down the hall with his walker. (We have to keep this toddler occupied somehow!!) She seemed amazed at how much the twister cables have improved Rayden's ability to stand and walk. The fact that Rayden will actually stand up flat, on the bottom of his feet, when he doesn't have his cables on is really amazing. After examining his feet she said he was doing so much better than she thought he would. She actually stated, and I quote, "He is looking darn good!" Although he is more flexible now than he was after his last surgery, thanks to the twister cables, they are not going to fix his problems. Rayden has tibial torsion. This means his tibia bones are rotating inward causing his feet to turn inward as well. Dr. Cuomo said the twister cables are forcing his feet straight for now but as he gets older and stronger they will not work any more. He has already broken them 8 times in the past two months. His body will continue to fight them and we will eventually have to do the surgery. She stated that when kids are making such big motor gains, like Rayden is right now, she doesn't want to do a surgery that will only set them back. The surgery he is needing will require cutting and repositioning bones preventing him from walking for quite some time. Therefore she would rather allow his brain time to explore and understand motor control. When the equipment is holding him back or we have gotten tired of breaking the equipment, then she will do the surgery. The surgery will fix his bones to achieve the same result the twister cables are doing. Although we are upset that he will have to go through surgery again in the future, we are relieved that it is not right now. Dr. Cuomo wants to keep a closer eye on him than other patients. Therefore we will return in four months. In the mean time, she has prescribed him some new AFOs, shoes to go over them, and thicker twister cables.

2-Pediatric Opthamologist
They began by using picture cards to find out what Rayden could see. They said this is the earliest vision test. I'm not so sure it gave them ANY information because he was NOT cooperative at all. A two year old does not take kindly to patches over their eyes! Especially Rayden, who HATES stickers!!

Rayden has been turning his left eye outward sometimes for the past two months. I brought this to the attention of his neurosurgeon who recommended we go see the opthamologist. Dr. Grace, opthamologist, stated that his eyes are lined up and she didn't see anything abnormal. His nerve pressure is normal as well. When I showed her the picture, she began to understand what I was talking about. She called it Intermittent Exotropia, pretty much the opposite of what he had previously. This can be totally unrelated to anything so at least we are not looking at more pressure on his brain. Since it is not something we see all the time her recommendation was patching. She wants us to place a patch over his right eye (good eye) an hour a day to force the left eye (drifting eye) to work harder. She said the eye is not sending the correct signals to his brain if it is drifting. This will eventually make the brain only trust the right eye and the left eye will stop working. The brain is pretty powerful!
She also stated she does believe he has good vision but she's not sure the vision is equal in both eyes. She thinks his visual field may be blocked which is why he turns his head sometimes to see things. She wants to see him again in four months as well.