Welcome to Rayden's page. Here you will find a story of our sons journey with Spina Bifida. There have been many challenges and struggles through the years but it's been worth it! I have tried to keep this blog updated. It might be easier to navigate by using the side bar and looking for specific dates or posts. You can even use the search engine for something specific. I welcome comments as well.
Rayden really enjoyed his first trip to the NC Zoo. He walked for about an hour and then got really tired. He got in and out of the stroller and enjoyed the fact that he and Daddy were wearing their "zoologist hats."
Rayden and his pre-school classmates were invited to attend the Special Olympics this year for the first time. For his age group it was more like a 'field day' with lots of little games to play, not really a competition. We were thrilled to attend. The send off and support we received from our entire school was overwhelming. As the participants marched down the breezeway to load the activity bus the entire school body was lining the way cheering the olympians on. (I would post the video but I don't have permission from all their parents.)
Rayden's favorite part was riding the school bus for the first time. He was really looking forward to it and talked about it for weeks prior to this day. To witness this excitement was pure joy.
Daddy and Rayden
Abel, Rayden and Garrett
It was very impressive to be a part of the processional marching down the track to spectators/family members in the bleachers. The band was playing and the MC was welcoming each school as we got to the area. It had only been two months since Rayden's surgeon released him to walk so this was an extremely large task for him, but being the "Super Hero" he is, he never complained. (Of course, Rayden wore his super hero cape.)
Our Olympian!
After Rayden played every single game we took him out to eat lunch and get a cool drink. Nanny and Papa joined us the entire day as well.
3-5-19 Rayden got his glasses. He actually LOVES them. He wears them all day. I am amazed at how easy it was for him to adjust to them. We have always called him our 'superman' and now, with the glasses, he actually resembles Clark Kent.
3-14-19 First BIG, LONG walk outside after all his major surgeries. We are somewhat concerned with his left leg turning inward. I sent this video to Dr. Vergun, his surgeon. She seems to think that his left leg is internally rotated about 80% of the time and she was not pleased with that after all she had done to correct it. She is recommending a KAFO, a custom de-rotation strap, or a unilateral twister cable for the left leg only. I am just gonna pray that all he needs is more time to build up his strength. 3-30-19 Our orthodist, Bob, stated that he feels as if Rayden just needs more time to build his muscle strength. He doesn't want to put him back in twister cables right now because that may mess up his hip surgery. He doesn't want to put him in a KAFO because that would hinder his knee from bending. He says let's give it some time. After another month if he is still turning inward he may recommend a de-rotation strap.
4-8-19 Rayden gets aquatic therapy sessions twice a week. The amount of muscle mass he is building is incredible. He has such wonderful therapists (Mrs. Jen and Mr. Josh) and he has even befriended an older lady (Mrs. Bobbie) who just enjoys helping/playing with Rayden. He truly enjoys his work outs. He doesn't even realize he is working.
4-11-19 Rayden is now walking full time everywhere! He is using his walker at school and outside, but taking independent steps inside the house to get from place to place. Yes, he is still turning his feet in a little and drags them when he gets tired, but he is doing so much better. We just continue to remind him by saying "pick up your feet" or "toes to the front". He is getting stronger every single day.
Feb. 25, 2019--10 1/2 weeks post surgery, Rayden is finally back to school. He was so used to being home with momma that he really didn't want to go back. Adriana Rosado, PT, allowed him to 'work' on the wheelchair so that eased the transition some. His brother, Alex, also attended for a little while just to make sure he didn't cry too terribly. I was shocked to find that Rayden had a fabulous transition and only cried for a second. He had a great first day back and was happy to see all his friends and teachers.
Feb. 26, 2019--Rayden had an appointment with his opthomologist, Dr. Grace. Rayden's optic nerves are still swollen (they will always be like this due to hydrocephalus damage) but she believes some of his optic nerve fibers are actually lost. The only test to prove this requires Rayden to be PERFECTLY still (not really age appropriate!) She wants to strike an all out 'war' against his vision while he is still growing. For the next three months we will be patching again for four hours a day, and adding glasses for astigmatism. Although his vision is 20/40 in the right eye and 20/70 in the left, she believes his issues are actually coming from his optic nerves and there is really nothing we can do about that. She is saying that the amblyopia (lazy eye) should respond and get better with the patching and glasses over the next three months. If it does not, she believes his issues stem from the optic nerve damage that happened when his pressure was extremely high in his brain before birth. March 4, 2019--Rayden had an appointment with his Orthopaedic Surgeon, Dr. Vergun. She said his x-rays look fabulous and she is extremely impressed with his progress. He is not only standing, but actually taking a few steps while holding my hands. He was only expected to be balancing on his legs by now, not walking! She UNDERestimated this guy! She loved seeing those straight legs and flat feet when he was taking steps. We discussed how far he has come and how much work she has put into this little fellow. The only thing she mentioned of concern was the left foot was getting a little tight and she doesn't want any regression. Therefore we are needing to do stretches daily. We are also continuing to wear his AFOs 24 hours a day, yuck. But that's a small price to pay for what all he has been through to be able to walk without cables and hip dysplasia. She released him to walk full blast and soar to his potential! When he heard that he refused to get back in his stroller and walked all the way from the exam room to the van! This is one ABSOLUTELY AMAZING, BLESSED, MIRACLE CHILD!!!!
Rayden sees 6 different specialists during these SB Clinic appointments (PT, OT, Orthopaedics, Neurosurgery, Urology, and Dr. Alexander). Most of Rayden's appointments went great today. There were just a few concerns (below). Dr. Alexander says Rayden seems to be right on target with his developmental milestones. He weighs 35lbs. 7.9oz without his AFOs (41st percentile) and he is 3'6" tall (79th percentile). His blood pressure was 116/51 and his BMI is in the 7th percentile, which is exactly where Dr. Alexander wants him to be. In other words PERFECT!! He did make two suggestions. 1-When he is 5/6 years old, we may send him for neuropsychology testing to see how he best learns. 2-His chest shows signs of pectus excavatum but we will continue to monitor this over the next several years as these do not typically require interventions until 10-15 years of age.
Melody from neurosurgery says Rayden is doing fantastic but they plan on doing a sedated MRI without contrast of his brain and total spine to assess for syringomyelia and a shunt series X-ray in February.
Dr. Ross, Urologist, says Rayden's latest renal ultrasound looked great although there was some bladdar wall thickening. Apparently that is typical and normal for people with SB but not cause for alarm right now. She wants us to get Rayden a daily multi-vitamin with iron because his blood work showed his iron was low. She is also concerned that the Peristeen enema isn't cleaning him out as good as before the surgery. (His last x-ray on Feb. 1 showed a "moderate colon burden") She wants us to try miralax daily, maybe after school to prevent any accidents during school. It's one of those 'play around with the dosage until you get it right' kind of things.
Everyone's main concern seemed to be his toe. I honestly have no idea how this happened, but I believe he scraped the tips of his toes on the steps of the pool during aquatic therapy. Apparently sores on SB patients can become very serious very quickly, especially because Rayden doesn't have the best blood circulation down to his feet. If it continues to get more red over the next two days then he will need an oral antibiotic. Of course, no pool or bathing for a while either.
Rayden's first two Aquatic Therapy visits were AMAZING!! His two therapists, Mr. Josh and Mrs. Jenn, are absolutely wonderful. There are no words to describe how it felt to see Rayden actually move his legs after being immobile for so long. His therapists had him kicking his legs, bending his knees and pushing off the wall, standing up on the steps, jumping out of the water by pushing on their legs, pushing with his arms to look for treasure, and catching, hitting and kicking the ball. Rayden doesn't even realize he is working. I know this kind of therapy is just what he needs to build his muscles so they are able to hold his bones in place when he is finally released to bear weight again. Watch out world... Rayden is gonna break another record!!
Just to lay down some background...Rayden has not left our house in three entire weeks. I mean he hasn't even been outside!! Four weeks prior to that, he only left a handful of times just to ride around in the truck to get some air. So for a total of SEVEN weeks this child has not been out of the house except to have surgery. Although Rayden has been through so much prior to this, NOTHING has compared to the pain he endured with this 12th surgery (Hips). Therefore just talking about going back to the doctor made him shake all over and cry. We had to do a lot of coaxing and promising that the doctors would not hurt him just to get him into the van even though I knew he didn't really trust us. I knew this was going to be a very rough appointment!
Normally Rayden does well, but I honestly believe with all my heart that he had some form of post traumatic stress because he absolutely fell apart when we rolled him into the examining room. I mean red face, tears flowing, shaking like a leaf, hands over his mouth, just pitiful!! I don't think I've ever seen him like this before. Alex has always been able to calm him down but not this time! Nothing was working. Even the nurse thought he was having an anxiety attack! I told them just to hurry up and cut the casts off because just waiting for him to calm down was not going to work.
Luckily, when he realized the casts were coming off he calmed down a tiny bet. The nurse even let him 'crack' the casts open with the tool. Another problem arose when he found out they were not throwing them away today. He had to have them wrapped back on to keep the feet in the correct position until he got his AFO's from our orthodist in Wilmington tomorrow. Just too much for a 4 year old to understand!!
This was the first time I had seen his feet since the reconstructive surgery seven weeks ago. The incision goes along the backs of each foot ALMOST ALL THE WAY AROUND!!!!!! It begins at the outside ankle, makes a 'V' shape in the back, and then continues down the inside of the foot half way to his toes! The only part of his foot that wasn't cut was the very front! There were pins sticking out of the tops of his feet that were buried all the way to the bone. It was actually a little shocking to see for the first time.
Ruth pulled the pins straight out the tops of his feet with no resistance. I was so relieved when they just came right out! There was a tiny bit of bleeding from the hole but nothing a bandaid couldn't fix. Alex was trying to distract Rayden and was shocked when I told him they were already out!
After seeing how great Raydens feet looked, Dr. Vergun wanted to see his hip incisions as well. She thought all seven of his incisions looked phenomenal. She said he was healing beautifully and was very proud of his progress. I told her about the only issue we encountered. While Rayden was still in the hospital she told us that he didn't have to use the abduction pillow. It was mainly for his comfort. So one day this past week after he had gone the entire day without using it, we thought he could sleep without as well. He woke up screaming "My legs hurt!!!" It was horrible. I turned on the light to see that his left leg was turned inward and he couldn't move it back by himself. When I moved it back there was no resistance. It was like picking up jello!! I put his pillow back between his legs and he went back to sleep. Dr. Vergun didn't like the sound of that and was worried that his hip had come out of joint. She ordered an x-ray. Thankfully everything looked perfect!
She stated that Rayden did not need to use the abduction pillow during the day but to continue using it at night a little while longer for his comfort. Absolutely no weight bearing, walking or crawling, for another three weeks. We can begin GENTLE range of motion/stretching exercises at home. She also wanted us to begin aquatic therapy to build his muscles and ligaments BEFORE allowing him to put weight on his bones in hopes that they will be strong enough to hold the bones in place. After doing aquatic therapy for three weeks she wants to do another x-ray before allowing him to bear weight. This is an extremely lengthy process but in the long run, when you think about the rest of his life...it's not that long at all!
We took Rayden to Wilmington to pick up his AFOs from our awesome orthodist, Bob, on Saturday. Yes, Saturday! Bob is a wonderful man and will meet the needs of his patients wherever, whenever need be! Rayden's post traumatic stress began to kick in when we got there as well but Bob quickly nipped that in the bud. He took Rayden's casts off and threw them across the floor making Rayden laugh. He dropped all fear and began to enjoy his visit. I was relieved to see this. Bob even gave Rayden a present, his very own big boy cup. Rayden's new AFOs are different than he has had before. There is less plastic around his leg and more flexibility. Since he had the surgery to straighten his feet and legs he will not have to use twister cables, therefore Bob adjusted his AFOs to reflect that. The only difference right now is Rayden has to wear his AFOs all the time except to take a bath, even in his sleep.
Dr. Vergun instructed us to remove the bandages in 10 days to allow them to heal with air. I knew they would heal better but I was extremely frightened to remove the bandages. I just kept thinking the incisions would open up and begin bleeding or they would get infected somehow. We finally got the nerve to remove them all 20 days after surgery.
Thursday, January 10, 2019 Rayden was able to sleep a little better last night even though they continued to wake him for meds and vitals. He was up at 6 am ready to watch his ipad. Michael and I were able to change his diaper together without the nurses help this morning. WIN!! We thought things were looking up. He only drank some chocolate milk this morning but threw that up when I gave him his colace medicine. We need to try the potty system today because allowing him to get backed up will cause another problem and now that he is throwing up, things are getting sketchy. The nurses are just not familiar with the Peristeen system and how it is administered so in this case Michael and I are the experts. It took us a while to talk out all the scenarios of how to get him onto the bedside potty with his legs straight out. We tried potty time around 10 am unsuccessfully. I asked for some prune juice with an adult amount of miralax. It arrived around 2:00. After drinking this we took him to play in the music room again. This time he used his right arm but still wouldn't use his left one because it had two IV's in it.
Around 3:30 we wheeled Rayden into the hospital school for some one-on-one science time. He made green snow. Now that was exciting. The more water he put into it the more snow he got! Rayden continued to say, "This is the coolest!" and "I love this!" It was wonderful to see him smile and have fun.
When we returned to the room I asked the nurse if she would take out his IV's so he would start using his arm. When she did, he began using it immediately like it was cured! It was kinda funny. He seemed to be feeling better and even asked for pizza from the Ronald McDonald room. After eating half a slice (the only thing he had eaten ALL DAY) he threw it all up!! I began to worry about him being backed up. Dr. Vergun came and said since we are keeping his pain under control with oral pain meds he could go home IF we could get his bowels to move. She didn't feel comfortable sending him home with a possible blockage, neither did we. She also asked the nurse for some sticky, plastic wrap to put over his incisions in case the prune juice caused a blow out. She wanted us to protect the incision sites. We tried the Peristeen potty system again around 8:00. This time we were somewhat successful. After transferring him into the bed he started asking for food! I knew then that he was going to be ok. He ate a banana, half of a peanut butter and jelly sandwich and drank a carton of chocolate milk.
Friday, January 11, 2019 The night nurse did not wake Rayden all night. Although he got a good nights sleep he woke up screaming in pain around 6 am. I called for meds and began packing up. When Dr. Vergun arrived the first thing she asked was "Did we get anything?" referring to his potty time. When we told her it was successful she went over discharge expectations. Rayden is not allowed to bear any weight at all on his legs or hips. He is to remain on the couch or in bed until we see her in 3 weeks. We can take the pillow out from between his legs if he tolerates it. It is mainly for his comfort by keeping his legs still and apart. We can sponge bathe him because we cannot get the casts wet. He can take Tylenol and Oxycodone every 5 hours for pain. We can take the bandages off in 10 days to let them air. (Certainly don't want to do this!) The swelling in his abdomen, groan and upper thighs can get very bad. (He's already huge and all shades of purple, green and yellow!) If the bandages get filled with blood of course we have to call her. We were sent home with a bedside potty seat and a small wheel chair. When we see her on Feb. 1 she will take the pins out of his feet, and bivalve the casts so we can go Feb. 2 to see Bob in Wilmington for new AFO's. He will remain non-weight bearing for another 3 weeks allowing the hips to heal. Then the physical therapy will begin to get him back up and walking! Another surgery will be scheduled in a year to remove the plate and pins from his hips. We were discharged at 10am. Rayden did not sleep all the way home and screamed "WE'RE HOME!" when he saw our house. So precious. He was so happy to be home. He did not sleep the rest of the day either and ate a very good dinner. Of course Michael, Alex and I had to figure out how best to do things for him at home. Saturday, January 12, 2019 You would think that Rayden would have slept much better being in his own bed but that was not the case. He wanted Momma around 3am and I had to lay down with him until we got up at 6am. He is adjusting well to staying on the couch. He still wants to be covered up with the blanket at all times because he hates to see his bandages, casts and pillow (we cannot put on any shorts or pants). The pain meds are constipating him so getting his bowels to move continues to be a challenge. He is much better with diaper changes but it still takes at least 2 people to do it. I can't pick him up with both arms AND take off the diaper AND put down a new one all by myself.
You can tell he is in pain. He grits his teeth and moans but he doesn't scream in pain anymore. He is the definition of a WARRIOR!! He just keeps getting stronger and stronger. He has a distinct cry when he is in pain. I can tell, even though he continuously screams "I'm fine" and answers "Nowhere" when I ask him where he is hurting. He tries so very hard to be brave and show no weakness. He is the bravest, strongest, most courageous four year old I know!
Rayden and his pre-school classmates were invited to attend the Special Olympics this year for the first time. For his age group it was more like a 'field day' with lots of little games to play, not really a competition. We were thrilled to attend. The send off and support we received from our entire school was overwhelming. As the participants marched down the breezeway to load the activity bus the entire school body was lining the way cheering the olympians on. (I would post the video but I don't have permission from all their parents.) 
Rayden's favorite part was riding the school bus for the first time. He was really looking forward to it and talked about it for weeks prior to this day. To witness this excitement was pure joy. 
It was very impressive to be a part of the processional marching down the track to spectators/family members in the bleachers. The band was playing and the MC was welcoming each school as we got to the area. It had only been two months since Rayden's surgeon released him to walk so this was an extremely large task for him, but being the "Super Hero" he is, he never complained. (Of course, Rayden wore his super hero cape.)
After Rayden played every single game we took him out to eat lunch and get a cool drink. Nanny and Papa joined us the entire day as well. 
March 4, 2019--Rayden had an appointment with his Orthopaedic Surgeon, Dr. Vergun. She said his x-rays look fabulous and she is extremely impressed with his progress. He is not only standing, but actually taking a few steps while holding my hands. He was only expected to be balancing on his legs by now, not walking! She UNDERestimated this guy! She loved seeing those straight legs and flat feet when he was taking steps. We discussed how far he has come and how much work she has put into this little fellow. The only thing she mentioned of concern was the left foot was getting a little tight and she doesn't want any regression. Therefore we are needing to do stretches daily. We are also continuing to wear his AFOs 24 hours a day, yuck. But that's a small price to pay for what all he has been through to be able to walk without cables and hip dysplasia. She released him to walk full blast and soar to his potential! When he heard that he refused to get back in his stroller and walked all the way from the exam room to the van! This is one ABSOLUTELY AMAZING, BLESSED, MIRACLE CHILD!!!!
Luckily, when he realized the casts were coming off he calmed down a tiny bet. The nurse even let him 'crack' the casts open with the tool. Another problem arose when he found out they were not throwing them away today. He had to have them wrapped back on to keep the feet in the correct position until he got his AFO's from our orthodist in Wilmington tomorrow. Just too much for a 4 year old to understand!!
After seeing how great Raydens feet looked, Dr. Vergun wanted to see his hip incisions as well. She thought all seven of his incisions looked phenomenal. She said he was healing beautifully and was very proud of his progress. I told her about the only issue we encountered. While Rayden was still in the hospital she told us that he didn't have to use the abduction pillow. It was mainly for his comfort. So one day this past week after he had gone the entire day without using it, we thought he could sleep without as well. He woke up screaming "My legs hurt!!!" It was horrible. I turned on the light to see that his left leg was turned inward and he couldn't move it back by himself. When I moved it back there was no resistance. It was like picking up jello!! I put his pillow back between his legs and he went back to sleep. Dr. Vergun didn't like the sound of that and was worried that his hip had come out of joint. She ordered an x-ray. Thankfully everything looked perfect! 
We took Rayden to Wilmington to pick up his AFOs from our awesome orthodist, Bob, on Saturday. Yes, Saturday! Bob is a wonderful man and will meet the needs of his patients wherever, whenever need be! Rayden's post traumatic stress began to kick in when we got there as well but Bob quickly nipped that in the bud. He took Rayden's casts off and threw them across the floor making Rayden laugh. He dropped all fear and began to enjoy his visit. I was relieved to see this. Bob even gave Rayden a present, his very own big boy cup. Rayden's new AFOs are different than he has had before. There is less plastic around his leg and more flexibility. Since he had the surgery to straighten his feet and legs he will not have to use twister cables, therefore Bob adjusted his AFOs to reflect that. The only difference right now is Rayden has to wear his AFOs all the time except to take a bath, even in his sleep.
Thursday, January 10, 2019 Rayden was able to sleep a little better last night even though they continued to wake him for meds and vitals. He was up at 6 am ready to watch his ipad. Michael and I were able to change his diaper together without the nurses help this morning. WIN!! We thought things were looking up. He only drank some chocolate milk this morning but threw that up when I gave him his colace medicine. We need to try the potty system today because allowing him to get backed up will cause another problem and now that he is throwing up, things are getting sketchy. The nurses are just not familiar with the Peristeen system and how it is administered so in this case Michael and I are the experts. It took us a while to talk out all the scenarios of how to get him onto the bedside potty with his legs straight out. We tried potty time around 10 am unsuccessfully. I asked for some prune juice with an adult amount of miralax. It arrived around 2:00. After drinking this we took him to play in the music room again. This time he used his right arm but still wouldn't use his left one because it had two IV's in it.
I began to worry about him being backed up. Dr. Vergun came and said since we are keeping his pain under control with oral pain meds he could go home IF we could get his bowels to move. She didn't feel comfortable sending him home with a possible blockage, neither did we. She also asked the nurse for some sticky, plastic wrap to put over his incisions in case the prune juice caused a blow out. She wanted us to protect the incision sites. We tried the Peristeen potty system again around 8:00. This time we were somewhat successful. After transferring him into the bed he started asking for food! I knew then that he was going to be ok. He ate a banana, half of a peanut butter and jelly sandwich and drank a carton of chocolate milk.
Friday, January 11, 2019 The night nurse did not wake Rayden all night. Although he got a good nights sleep he woke up screaming in pain around 6 am. I called for meds and began packing up. When Dr. Vergun arrived the first thing she asked was "Did we get anything?" referring to his potty time. When we told her it was successful she went over discharge expectations. Rayden is not allowed to bear any weight at all on his legs or hips. He is to remain on the couch or in bed until we see her in 3 weeks. We can take the pillow out from between his legs if he tolerates it. It is mainly for his comfort by keeping his legs still and apart. We can sponge bathe him because we cannot get the casts wet. He can take Tylenol and Oxycodone every 5 hours for pain. We can take the bandages off in 10 days to let them air. (Certainly don't want to do this!) The swelling in his abdomen, groan and upper thighs can get very bad. (He's already huge and all shades of purple, green and yellow!) If the bandages get filled with blood of course we have to call her. We were sent home with a bedside potty seat and a small wheel chair. When we see her on Feb. 1 she will take the pins out of his feet, and bivalve the casts so we can go Feb. 2 to see Bob in Wilmington for new AFO's. He will remain non-weight bearing for another 3 weeks allowing the hips to heal. Then the physical therapy will begin to get him back up and walking! Another surgery will be scheduled in a year to remove the plate and pins from his hips.
We were discharged at 10am. Rayden did not sleep all the way home and screamed "WE'RE HOME!" when he saw our house. So precious. He was so happy to be home. He did not sleep the rest of the day either and ate a very good dinner. Of course Michael, Alex and I had to figure out how best to do things for him at home.
You can tell he is in pain. He grits his teeth and moans but he doesn't scream in pain anymore. He is the definition of a WARRIOR!! He just keeps getting stronger and stronger. He has a distinct cry when he is in pain. I can tell, even though he continuously screams "I'm fine" and answers "Nowhere" when I ask him where he is hurting. He tries so very hard to be brave and show no weakness. He is the bravest, strongest, most courageous four year old I know!
