June 9, 2017 "Henry's and Gymnast"

May 31- An inspirational member of our church, Henry Runion, uses forearm crutches to walk every day. So when Rayden saw them for the first time at UNC he knew exactly what they were. He immediately grabbed them and said "I walking." Now that he has his very own pair he doesn't call them crutches. He refers to them as his "Henry's". I wouldn't have it any other way. Thank you Mr. Henry for being such an inspiration and role model for Rayden to follow.

In this video clip he is using them for the very first time. I know it is going to take him a bit longer to adjust to them than his walker. They don't balance themselves like the walker does. Rayden has to do ALL the work and it's very exhausting for him. I have no doubt that he will get the hang of them soon.

June 9- Rayden's newest trick is to pick his ENTIRE body up with his arms (elbows straight). He can bring his body up over the top of his walker! He can even do it on the floor with his feet straight out in front of him. He has so much upper body strength it amazes me! I'm sure most of that is coming from his gymnastics class at Elite Gym.

May 3, 2017 "Walking"

Rayden can push and pull his walker. It doesn't really matter to him. He's officially a walker!! It's amazing to think how far he has come in only 6 months. With the correct AFO's, twister cables and walker he has really soared. Go, Rayden, Go!!

May 19, 2017 "Hip Surgeon Consult #1"

Our appointment today was a little confusing. We were scheduled to see Dr. Narotam, pediatric orthopaedic, to get fitted for bracing. Last week he consulted with Dr. Cuomo, pediatric orthopaedic surgeon, about Rayden's case. They decided that bracing really wasn't the best option after all. Dr. Cuomo believes that bracing the hips might give us a better shape to the socket but it will not give us a better shape to the thigh bone. So it might look like it's sitting in the correct position but she believes it will not solve the problem. In order to get the hip to actually sit better in the socket Rayden would need surgery. Therefore Dr. Narotam called me to let me know that there had been a change of plans. Rayden would not be getting fitted for a hip brace. Instead, we would keep our same appointment and he would pull Dr. Cuomo in to consult with us. The only problem with the scenario is that Dr. Cuomo is extremely busy. She didn't really have time to leave her scheduled patients to come and talk to us. She advised Dr. Narotam of her plan so he could relay it to us.

Rayden's right hip is 25% uncovered by the socket and his left is 50% uncovered. His socket bones are not curved around the hip joint. Instead of being curved like the letter C, Rayden's hip bones are actually tilting in an upward angle like the letter V. This means that the more he walks, the bones will gradually drift upward and OUT of the socket. Dr. Narotam doesn't believe it will happen all of a sudden, but he said there is no doubt in his mind that this WILL happen. They believe that surgery on Rayden's hips is something that needs to be done sooner rather than later.


The proposed surgery is called a Femoral Osteotomy. They would cut the femur (thigh bone) and point it 

more inward so that the head of the femur goes right into the middle of the socket not up and out. Then they would re-attach the bones with a plate that will hold the bone into an 'L' position. Hopefully the hips would then start to grow CURVING around the joints instead of going upward like it is right now. The recommendation is to do both hips at the same time because he would be off of his feet for several months in a spica cast from the stomach down.

After searching through old x-rays, Dr. Narotam found a hip x-ray from almost exactly a year ago. This film revealed that Rayden's hips were in the same position then; meaning they haven't really changed in a year! So their consensus is to actually wait another 4-6 months giving Rayden more time to advance in walking. If it hasn't gotten worse at the next visit then we will continue to watch it. Maybe Rayden actually DOES have enough strength in his muscles to stop the bone from popping out of joint...

This all sounded so barbaric to me! Like they were going to turn my baby into a bionic person ("we can re-build him"). I'm aware that things like this have to be done, but as I sit and ponder on them actually cutting his legs in two it breaks my heart! Do we really allow them to do this to him? Is it what he needs to be able to walk in the future? Dr. Narotam says they only do this surgery on people that have the potential to be life-long walkers. They want to preserve his ability to walk and keep him out of a wheelchair. Without this surgery it would be so difficult for him to walk. He would expel so much energy that he would tire out easily causing him to give up and lean toward a wheelchair. We certainly don't want to crush his ability to walk... God, please give us the answers. Ultimately the parents have to give permission to do any surgical procedures. Doctors can make recommendations but they don't really make the final decisions. It's so hard to know what to do. Things we do now can help or hinder him in the future. Yes, I lean on God for my strength, knowledge, and answers but it is extremely hard not to worry.

May 5, 2017 "Three more appointments"

May 4

1-Went for an x-ray because Dr. Narotam suspects Rayden's hip may have slipped out of joint. 

2-Ophthalmology- Dr. Grace says Rayden's intermittent exotropia is getting worse. She says his left eye "just goes on vacation." It turns outward sometimes which causes two different pictures to be sent to the brain. Dr. Grace is really concerned about the vision in his left eye. She says people misunderstand the definition of lazy eye. It actually means low vision. It is not communicating with the brain correctly. If it's not corrected by age 7 the brain will start to ignore the eye causing permanent vision loss. 

I have been really confused. I thought the patching was correcting his crossing. Dr. Grace says patching works on vision but she doesn't believe his crossing is due to vision. She believes there is other stuff going on. (neurological deficit)

Her recommendation is to increase wearing his patch from one hour a day to two hours a day. If there is no improvement in six months, age 3, she will recommend surgery. They will operate on the muscles to bring the eyes closer together. This will train his eyes to work together for one picture signal to the brain instead of two. Ultimately she is trying to prevent permanent vision loss in his left eye. 

May 5

1-Orthodist-We went to Wilmington this afternoon to get Rayden's twister cables adjusted. He apparently has gone through a growth spurt and they were too short. 

Of course, we had to stop by and see Alex at work. Rayden sure misses his brother. 

2-X-ray results- Here is the email I received from Dr. Narotam this afternoon:

So the hips are in place in the socket which is good news, BUT the left hip (your right) looks a little "dysplastic" which means the socket is not deep enough to keep the hip in place. I suspect the the hip (the oval shaped bone) will progressively move out of the socket over time. 

I think it would be worthwhile to try a hip brace at night to try to prevent progression of the hip out of the socket and hopefully improve the shape of the socket. I suggest you call us to set up an appointment in the next couple weeks to get this going. We can and will definitely talk about this more when we see you. 

So in summary this is a MILD problem now, but very likely to get worse. Bracing is our best hope to fix it without surgery, but the chance of success is low because the muscles around his hips are weak and may not keep them in the socket - so surgery may be the next recommendation if the brace fails UNLESS we are convinced that surgery would not make a difference. 

Needless to say I'm not very happy today!! Two days in a row we were told Rayden may need surgery in his future. He could really use your prayers. 

April 27, 2017 "Spina Bifida Clinic Day"

We left our house at 7:30 am and didn't return until 6:30 pm. Although clinic days are very long, Rayden is a trooper. He absolutely amazed us with his behavior today. He was super cooperative and easy to get along with. Now that's saying A LOT for a busy, little 2 year old. I think I was more frustrated than he was. I had to take his shoes, and cables off about 5 times!! That alone is frustrating. One of our doctors was about 45 minutes late for our appointment, adding to my frustration. Other than that, the day went pretty smooth.


Height: 3' 0.42"- 70th percentile
Weight: 29 lbs. 15.7 oz. - 50th percentile
Although this is pretty average, SB kids need to be below average to support their weight on their feet.

Renal ultrasound pictures

1-Renal Ultrasound- Rayden was a little scared as I lowered him on the examining table but we reassured him that the technician wasn't going to hurt him. We told him that she was going to take pictures of his belly with some lotion. (He likes lotion) He laid perfectly still as the lady took pictures of his bladder and both kidneys. Daddy gave him about three M&M's, which makes everything better!

2-Urology- Dr. Ross says Rayden's kidney's and bladder look wonderful. Although she said he will NOT be able to be potty trained due to the nerve damage, she wants to do another Urodynamics Study this summer to see if catheterizing would be beneficial at all for him as he begins preschool.

3-Nephrology- Rayden's blood pressure's have been doing great on this medication. According to his current weight and height, Dr. Sanderson says that the medication is at its lowest dosage. Since Rayden is not expecting to go into surgery for the next three months she decided to remove the medication on a trial run. We still have to monitor and record his BP weekly. If there is a spike above 110/60 then, of course, he will go back on the medicine. Since Rayden's kidneys do not produce the hormone that regulates his blood pressure we will have to keep a close eye on this his entire life. Prolonged high BP could cause him to have heart problems in the future.

4-Occupational Therapy-  Holly seemed upset that we stopped Rayden's OT to give more time to PT. She seemed to think that he was behind in some areas. Although Rayden CAN scribble with a crayon, she believes he should be "drawing with intention." In other words, she wants him to be drawing circles and lines. She gave me lots of ideas to try at home. Some more fine motor skills activities she wants us to do is threading a pipe cleaner with cherrios or fruit loops. She also said he should be opening bottles and using one hand more than the other. He really doesn't prefer one hand over the other. He eats and draws with both hands. I suppose we have some work to do. 

5-Spina Bifida Clinic Director- Dr. Alexander believes Rayden may be a little delayed after hearing some of the reports from Holly, OT. Rayden continues to use both hands consistently and has not chosen a dominant hand. This is called lateralization of the brain. (Lateralization of brain function refers to how some neural functions, or cognitive processes tend to be more dominant in one hemisphere than the other. The medial longitudinal fissure separates the human brain into two distinct cerebral hemispheres, connected by the corpus callosum.) Dr. Alexander says this is an 18-24 mo. skill. Rayden is 28 mo. so he is a little behind. Of course, Rayden's brain is unlike any other child his age too. He is missing sections (corpus callosum) that may or may not have anything to do with this specific developmental delay. If we can't seem to get the fine motor skills back on track then we may need to restart his Occupational therapy at home. When he gets evaluated for preschool they will be able to tell how far his delay really is. Dr. Alexander actually wants to help develop Rayden's IEP for preschool! I was really impressed by this. Being a teacher myself, I thought I could handle this part. But he reminded me that I'm Rayden's MOM, not a teacher when it comes to writing his IEP.

Rayden's lower legs and feet turn all shades of red and purple from time to time. Dr. Alexander reassured us that it was alright. With Spina Bifida the nerves to the capillaries don't open and close as well. As long as the color comes back within 3 seconds after pressing his toes, it's not really anything to worry about.

Rayden has been examined by countless doctors time and time again. I have never seen any of them do the old hammer to the knee reflex trick. Dr. Alexander did today. Both of Rayden's legs shot up! I couldn't believe it. I didn't think he had normal reflexes. Dr. Alexander says this confirms Rayden's L3 (middle of the lumbar region of the spine) level diagnosis.

6-Physical Therapy- Cathy noticed that Rayden had a nice range of motion but she felt resistance in his muscles, which she believes is due to wearing twister cables all day. She also noticed that his knees don't fully extend and he had some bowing upward of his tibias; not terrible but it is there. She wanted to see how he walked with his walker. She got all the docs out of the rooms to see him walk up and down the hallway so he wouldn't have to do it but one time. They were all amazed at how fast he could go, how upright his posture was, and how he could sling his walker around on a dime. He showed them his 'Evel Knievel trick' and they all laughed. When we showed them he could walk up and down the hallway holding onto only one hand, all their jaws hit the floor. Six months ago Rayden could barely stand up!! Although he's doing so wonderful, Cathy just didn't think he was mature enough to graduate to arm crutches. I disagreed so she went to get a pair from her storage closet just to prove it to me. After she adjusted them and placed them on his arms he wobbled a little but he walked with them. He even said, "I walking." Cathy apologized. She said most kids place the crutches in front of them at first blocking their feet. Not Rayden. He held them out to the side to stable himself and took steps. I give that credit to Mr. Henry Runion, a member of our church. He uses arm crutches and Rayden walks all the way down the church isle to see him on Sunday morning. So when Cathy brought the crutches in, he wasn't afraid of them, he knew what they were used for. He even said, "Henry." 

7-Orthopaedics- As Dr. Narotam watched Rayden walk down the hall, he mentioned that his cables seem to be too short because he can't stand fully erect, like the cables are pulling him down. (We have to get them adjusted in Wilmington). After a long, tedious examination Dr. Narotam mentioned several things. (1) His left leg is much skinnier than his right leg. (2) He believes his tibia torsion is not bad enough to warrant surgery! Yippee!! (3) Although his right foot IS turning in, he can get his feet into neutral position so there is no need for casting right now. (4) His hamstrings are too tight. We need to do a lot more stretches. (5) His knees only extend about 15 degrees. (6) He believes one of Rayden's hips may have slipped out of joint. Ugghh!! His knees did not align and one leg seems longer than the other. We have to get an x-ray next week to be sure. Dr. Narotam says even if the hip comes completely out of the socket they don't really do anything in SB children because they don't have the muscles strong enough to hold the hip in place. Apparently he seems to think Rayden can't feel his hip muscles... This sounded really strange to me. You mean my child will be walking around with a broken hip forever??!! The only real remedy would be to put a lift in his shoe and stretch his hips aggressively to prevent hip stiffening.

Rayden kicked Dr. Narotam's hands while standing up without shoes on--in order to do that you have to have hip flexors and knee extensors. Those are his strong points. His ankle dorsal flexors are week, he doesn't have any strength in his feet. Dr. Narotam believes Rayden will always have to have AFO's but NOT twister cables, yippee!! He believes the twister cables are helping encourage his body to use the right muscles to walk straight. Once his body understands this then he can stop using the cables.

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.

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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.