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.
We began this day with an eye appointment at Duke with Dr. El-Dairi, Pediatric Neuro-Opthalmologist. Rayden completed all the preliminary tests before doing a Virtual Reality Visual Field Test for a Research Study. The purpose of this study is to test a new way of measuring the peripheral vision using a device which can be worn as goggles rather than being a large instrument the patient must sit at. It was more like a video game. There will be approximately 500 subjects in this study at Duke. It was very interesting.
Dr. El-Dairi and I discussed Rayden's CVI and accommodations he needed at school. She seemed very upset about Rayden's shunt failure in February. The last time we saw her in April of 2022, she noted some thickening in Rayden's optic nerves and was worried about possible shunt failure. We were supposed to go back if needed but did not. She said she felt responsible because she could have possibly prevented his emergency shunt surgery in Florida! After examining Rayden's eyes, she noticed his left eye turning back inward. She stated this could be weak muscles from his recent seizure or even from the shunt surgery. She wants to see him again in three months. If it is still turning inward, she mentioned that a discussion of eye muscle surgery would be needed again. She concluded that his vision is better though, and gave him a prescription for new glasses.
After lunch at Heavenly Buffalo, we made a pit stop at Target to pick up some clothes because Rayden had wet all the way through (very unlike him). His MRI was scheduled for 4pm. Even though it was supposed to last 45 minutes, we chose not to sedate him. He is older now and we believed he could hold still. I explained that if he didn't hold still they would have to put an IV with medicine. That was all it took. Rayden was perfectly still and the test was over in 30 min.
The MRI revealed no bone marrow swelling, no fracture or bone lesion, normal joints, normal alignment of both hips, intact tendons and hamstrings, and no infection. This does not explain all of his pain. Since we have been home for Christmas break he has felt better, but he said it was because he wasn't walking as much. I tried to think of all the things that could be a symptom. His Peristeen hasn't worked in over two months. He was urinating a lot more than normal. All signs are leading to tethered cord. Dr. Vergun asked Dr. Ross, urologist, to take a look at Rayden's case. She scheduled an abdominal x-ray and renal ultrasound for Jan. 4. She mentioned looking for a kidney stone. He is scheduled for a Urodynamics Study January 16th, and they notified neurosurgery as well.
December 19-Rayden enjoyed dressing up for Christmas Spirit Week at School. He sported head bands, Christmas hats, bell and lightbulb necklaces, pajama's, and elf costumes.
December 20-The Sudan Dunn Clowns have the sweetest, most loving people. Rayden has been in so much pain lately and missed their annual Shrinette Christmas party so they made the fun happen just for him! I have not seen Rayden smile this big in weeks. He had the best time dancing (in his chair) with 'his' clowns.
December 25-Rayden was beyond excited to see his new shotgun under the tree. This is the only thing he asked for! He is not a stingy boy. He enjoyed fabulous food, family games, hunting a fox squirrel, target practice, and lots of love and laughter.
Rayden has been in so much pain lately. It has gotten worse since we saw Dr. Vergun in September. He specifically points to the bone in his lower, right back just above the hip. Although he is still able to go, he has to walk slowly and it often seems to give, and he stumbles. I emailed Dr. Vergun on Dec. 7 asking for an appointment. I just knew his hip was out of joint. Most of the people on our Spina Bifida Facebook page believe he has tethered cord again. We can handle ANYTHING but that!
We were able to see her on Dec. 12. The X-rays looked good, although they showed 60% acetabular coverage on both femoral heads. She examined his hips and concluded that he had Greater Trochanteric Bursitis and an irritated/inflamed growth plate. Bursitis is swelling in a small, fluid-filled sac called a bursa. These bursa are like bubble wrap. They cushion the bones and tissues around your joints. Bursitis happens when something irritates a bursa. She said it was very painful and all we can do is Motrin and ice. She mentioned that he will more than likely need more surgeries in the future, but his growth plates need to grow more before then.
Even though we were giving Rayden Motrin and icing his hip twice a day, the pain just continued to get worse every day. He was in pure agony. His ability to walk had declined drastically. The more he walked, the more it hurt. When he stood his legs gave way. It broke my heart to see him in so much pain after school that he didn't feel like playing with his friends. 💔 He didn't even feel like going to the Shriner's Clowns Christmas Party! He even asked to ride in his wheelchair to school! He NEVER does that. He was crying in pain so bad one day that we even had to take him home from school before 10am.
I was getting really worried. On Dec. 20, I emailed Dr. Vergun again explaining the situation. We had a virtual visit on Dec. 22. She was able to see Rayden's decline and he told her about how bad the pain had become. She wanted to rule out any infection in his hip, so she scheduled an MRI for Dec. 27.
Since Rayden didn't see any wildlife when he went hunting with the Gobbles & Grunts, Mr. Ed Martin contacted us with another opportunity. This time the hunt was even closer to our house. Dana and Jeff Jones hosted the hunt on their property in Clinton. Mr. Ed brought a track chair for Rayden and a mobile blind that he could ride straight into. After introductions, exploring the property, and meeting Henry the cow; they all went to the mobile blind. There were five grown men and Rayden in the track chair inside the blind! They all wanted to experience the priceless moment of a little boy shooting his first deer. Around 5pm a small cow horned buck came out to the corn pile. Rayden got sighted in and took the shot without hesitation. Everyone cheered and fist bumped. Even though the buck ran off, everyone saw blood splatter so they knew he hit the deer. With a little more day light remaining, they decided to wait to see if another deer would come out.
As luck would have it, another small buck walked out just before legal light, but the shot didn't connect. All five men, Uncle G, Alex, Dana, and myself looked for the deer in the dark for hours! They even called in a friend with dogs to come track the deer. After several hours with no luck, everyone decided to come back in the morning to search in the light. Mr. Jeff cooked everyone dinner before we all went home. Rayden was disappointed but never cried. He just knew he hit the deer and no one could find him. Michael, Alex, and Mr. Jeff were out the next morning. They looked for over 4 hours with no other signs of the deer. The only indication that Rayden actually hit the deer was the blood pool and fur at the corn pile. After reviewing the video in slow motion, they concluded that the deer must have been hit in the front leg but was able to hobble off and survive with the wound. Rayden was very, very disappointed but it was a lesson in hunting. Jeff and Dana invited him to hunt their property the remainder of deer season. Rayden went a couple more times, but never saw another deer.
Rayden was invited to a weekend camping/hunting trip with the Gobbles and Grunts organization. He was beyond excited with the thought of actually killing his first deer. He asked at least 100 times a day how many days were left until he went hunting. I made him a paper chain so he would have a visual reminder to help him count down. I thought he was going to explode with excitement when we broke the final ring.
We arrived at Rock Fish Meadows Christian Campground in Rose Hill around 4pm. It seemed to be a very peaceful place, off the beaten path, at least 15 minutes from anything. There were four cabins. Each cabin had 8 sets of bunk beds and 2 showers. Families were housed in the first cabin, closest to the mess hall. Women in the second, and men/boys in the third and fourth. We threw our things in the cabin and headed straight to the shooting range down the hill.
There were lots of people already shooting targets and sighting in their guns. Everyone was super friendly and welcoming. We even met Rayden's guide, Will Holly. Rayden was thrilled to shoot his 6.5 Grendel but was overjoyed when he learned he could shoot any gun on the table!
Later that evening, after a large dinner, Gobbles & Grunts staff introduced themselves and matched the children with their hunting guides. They took a few pictures and gave each child a backpack full of prizes. They even received camouflaged hoodies and hunter's orange hats. Rayden was a little puzzled by the toilet paper though. 🤣
The hunters had to meet for breakfast at 4am. I thought Rayden would have a hard time waking up, but I was totally wrong. This boy was more eager to get up than on Christmas morning!! With a bag full of snacks and drinks, they arrived at the hunting blind about 5:30am. I'm not sure who all went to sleep in the blind, but I know Rayden did. It's rather difficult for an 8yr. old child to sit still and quiet for very long, but Rayden did well.
After sitting there for hours seeing absolutely nothing, Rayden was a little dishearten. All the hunters began to come back to camp for lunch, when Rayden noticed a Performance East sticker on one of the guides trucks. Will knew the owner, Taylor Williams, and asked if he would talk to Rayden. Rayden immediately recognized him from some youtube videos and asked if he knew Brayden Price, a celebrity youtube star. Taylor walked away a minute, made a phone call, and returned with Brayden Price on FaceTime. Rayden was so star struck. You can see him in this video rubbing his chest. I've never seen Rayden speechless before!! I asked him why he didn't talk to his favorite youtube star, and he replied, "My heart was beating so fast, I thought it was gonna explode!" Everyone thought Rayden would be upset because he didn't see a deer, but seeing Brayden Price prevented him from wallowing in that pity. He was on cloud nine all during lunch! 🤩
During the lunch break, Rayden was able to ride the track chair around. He was a little uneasy at first, but it didn't take long for him to get the hand of it. He was even participating in races before break was over. Mr. Ed Martin, from North Carolina Handicapped Sportsmen, told me how to reserve one in the future. This was invaluable information. Imagine the doors it will open for Rayden, and the freedom it will give him to explore the outdoors the way he wants without fear of falling or getting too tired! I can't wait to reserve these chairs for Rayden, and I'm so thankful for Mr. Ed sharing the information. 💙
At 2pm, they all loaded back up to go hunting again. This time Will Holly took them to a different stand in hopes of seeing something, but it didn't work. Other children killed deer and bear, but Rayden didn't even see anything the entire time. He wasn't upset though. He was all smiles and had a BLAST just attending.
The next morning we were treated to a fabulous breakfast and enjoyed a worship service in the outside amphitheater. Each guide and hunting team went on stage to talk about their experience and laugh at all the hunters that fell asleep. The children received a t-shirt and a framed picture of the weekend. They all signed a giant cross as well. It was a fabulous end to a wonderful weekend. We are so thankful for the opportunity to become a part of the family of Gobbles & Grunts. This organization is filled with amazing people who have the genuine love of God and share it with so many.
Oct. 23-10pm Rayden fell asleep on the couch as we were watching TV. All of a sudden, he began to laugh like we have never heard before. I actually thought he was crying at first. It was a very deep, creepy, belly laugh. The kind where you can't even breathe because you're laughing so hard. We thought he was having a funny dream, but it lasted a little too long. Most sleeping laughter is just a chuckle or giggle. This was an out-of-control, deep, strange, laugh. We decided to wake him and take him to bed. As Alex carried him to his room, he continued to laugh. We became alarmed and woke him even more asking him questions. Although he never opened his eyes, he was able to answer the questions through the laughter. Alex mentioned that he heard him do this before and even mentioned it may be a seizure. I thought he was crazy because I had never heard or read of anything like that. He went back to sleep and began to laugh again before we left the room. I went back to his bed, woke him, and asked if he was alright. He said yes and went back to sleep. By the time I got to my bedroom I could hear him doing it again on the monitor but this time it only lasted a minute. #13
The next day, I emailed Dr. Yang, epileptologist. She said laughing type seizures are technically a focal seizure called gelastic seizures. It is associated with a specific brain lesion called hypothalamic hamartoma found in the base of the brain (hypothalamus). It is usually there from birth, kind of like a skin tag. The laughter is usually a "strange/off/weird/evil" laugh not like a happy, giggly laugh. It is often forced and the person cannot stop it from happening, even though they are aware of what's going on. She asked that we video his seizures if we can.
Nov. 4 Rayden was sleeping with me while Michael and Alex were gone on a fishing trip. Around 7am, he woke and made an aweful sound. I looked over to find him reaching in the sky, shaking his head back and forth, and repeating "oh." I immediately knew he was having a seizure. #14 I rolled him over to his side, started the timer, and ran to get his medicine. I was able to video some of it for his doctor while watching the timer. I continued to comfort, reassure, and remind him to breathe, while he rubbed his head in pain. After 4 min. I began to open the emergency nasal spray. Even though Rayden was still not exactly cognitive of what was going on, he began to fight me not wanting me to put anything in his nose. I don't know if this caused him to stress more or what, but he began to convulse. His arms and legs stiffened and began twitching back and forth. I can't exactly say how long this continued because I called 911. When he stopped convulsing and was able to breathe on his own, I ran to unlock the doors for the paramedics. When they first arrived, Rayden's pulse oxygen level was only 80%. Everything else checked out fine. They made sure his oxygen increased to 98% before they left. I didn't really feel at ease because he didn't seem himself. Although he could shake his head to answer questions, he wasn't responding. I called Deneice Elmore to come over so I wouldn't be alone. By 8am he was lip smacking and his eyes were in a fixed stair. I actually had to remind him to breathe. He vomited and began choking on his saliva. #15 I called 911 again. Deneice and the paramedics arrived at the same time. The 911 operator was telling me to do chest compressions because Rayden wasn't breathing at all. The paramedic ran in and pushed me out of the way. He yelled at the operator on my speaker phone, scooped Rayden up and ran him to the ambulance to administer oxygen. Deneice reminded me to put on some clothes and grab something for Rayden before jumping in the ambulance.
As we traveled to Wake Med Children's ER, Rayden's eyes were fixed, his body was stiff. Although he wasn't blinking or responding to my voice, he was squeezing my hand and followed me with his eyes when I moved. His pulse oxygen level decreased drastically, even though he was on the nasal cannula. The paramedic put on an oxygen mask. You know Rayden had to be out of it for him to allow these things on his face! At 8:45 he squeezed my hand so tight that I knew something was wrong. As soon as I got the paramedic's attention his entire body began to jump like hiccups. #16 He gave him 7mL of Versed in his thigh. This made a total of 17mL including the Valtoco I gave him earlier. When he stopped jumping I bent to sing our song over him, 'In Jesus Name' by Katy Nichole.
We were able to make it to Wake Med without anymore seizures. As soon as we arrived he was surrounded by a swarm of medical personnel. When they moved him from the gurney to the bed, his body tightened and his teeth clinched. He was choking on his saliva, and jumping again. #17 The doctor opened his lips with her fingers and began suctioning his mouth out. She called for Ativan and an intubation tray, but luckily he calmed before that arrived. The nurses poked him over and over in both arms, wrists, and under his arms. I tried to tell him he was a horrible stick, but they had to get IV access. Luckily, Rayden was still unconscious for the most part. They finally got access in his right arm. I discussed his medical history with the doctors, because he has never been to Wake Med before. After hearing he has a shunt, they ordered a brain CT and Xray shunt series. I knew it wasn't the shunt, but they have to rule it out. The doctor got in touch with his neurologist from UNC and they agreed to give him an IV dose of his anti-seizure medication, Lacosamide. Rayden slept with the oxygen mask on for hours. The plan was to just let him sleep the meds off and see if he had any damage when he wakes. He spiked a fever around 1:30pm. They checked for a UTI, completed blood work, and administered an IV dose of Rocefin. He woke around 4pm. Although he was angry to find out he was in the hospital, and hurting from all the IV pokes, he was able to answer my questions so I was relieved. Michael, Alex, and Papa had left the island as soon as they could and drove straight there. When they arrived around 4:30, Rayden began to cry out loud and reach his arms out for hugs. He was still very emotional and agitated. We were discharged around 6 and welcomed home with plates of yummy food from the Elmore family. We hadn't eaten anything the entire day and Rayden was soooo hungry. God knows what you need and will supply! After it is all said and done, I realized I wasn't alone during this entire event after all. I am so thankful God was with me and gave me the strength to help Rayden. I didn't break down from my medical PTSD or have an anxiety attack. God is so good! He has such big plans for Rayden and I know there is a reason for all of his struggles. 🧡💛
Rayden always loves dressing up during Red Ribbon Week.
The EC, self-contained class operates a Coffee Cart on Fridays. The students take turns offering coffee, hot chocolate, apple cider, and snacks to staff members. Rayden enjoyed pushing the cart from room to room and taking the money, while Janae made the drinks.
August 11 Rayden got new AFOs. A few days later we noticed his feet and ankles were terribly swollen at night. At first, I thought it was the AFOs, but Bob said they would cause skin breakdown before swelling. Secondly, I thought it must be due to his circulation problems. Next, I thought it was the heat. Then, maybe he was on his feet a lot since school had just started. Later, I wondered if he was eating too much salt. After two weeks of this I began to get really concerned. Could this be his new seizure medicine or something more serious? I asked some older people with Spina Bifida who mentioned kidney problems, congestive heart failure, and lymphedema. I honestly didn't think it was to that extent, but my Mommy instincts felt something was wrong. I messaged all of his doctors looking for answers. His Orthopaedic Surgeon requested X-rays of his feet and ankles. His Urologist requested blood work to check Vitamin D levels, and his Neurologist wanted blood work to check kidney functions.
Sept. 7 we went to Dr. Chiodo, pediatrician, to complete the blood work and x-rays. After seeing the swelling in his feet, she understood my concerns and ordered a CMP, CBC w/DIFF, Vitamin D, and Cystatin C. Everyone knows that Rayden's veins are almost impossible to find. Kelly Morris, his favorite nurse, was very upset when she had to draw his labs. You know you have the best health care providers when they pray before, during, and after drawing your child's blood. Kelly was unsuccessful on three attempts even though Rayden was super brave and perfectly still. We were all so proud of him. Kelly was literally in tears and begged me not to make her do it again. She asked Michelle Westbrook, Rayden's other favorite nurse, to come give it a try instead. Michelle also began with a word of prayer. Amazingly, she got the blood with one stick and Rayden didn't even feel it! Thank you, Lord! Now, as expected, Michelle is considered Rayden's #1 nurse and Kelly is chopped liver, haha. Afterwards, we went over to BJMH to complete the x-rays of his feet.
All of his labs came back normal except Vitamin D. This should be greater than 30, but his was 25. Dr. Chiodo advised us to begin an over-the-counter supplement. His Orthopaedic Surgeon didn't see anything alarming on the x-rays, although they only took ankle films and she wanted foot, ankle and femur. She also noted that Vit. D deficiency could lead to bone insufficiencies and stated this could cause swelling if there are any micro-fractures. Of course, that worried me, so I made an appointment with her. I just wouldn't feel at ease until she saw him.
Sept. 26 we went to Dr. Vergun, Orthopaedic Surgeon. She took x-rays of his feet, ankles, and tibias. These films showed that his tibiotalar joints appear more like saddle joints instead of hinged joints. There are no signs of joint collapse so this wasn't a concern today. His toes have a stair-step appearance, also not a concern for today. The biggest concern was the bones in the middle of both feet were diffusely osteopenic. Osteopenia is a loss of bone mass or bone mineral density. It is the stage before osteoporosis. Of course, this is alarming! How could this be happening? Osteoporosis is something older people get, not an 8 year old!! Dr. Vergun stated that some anti-seizure medications can cause bone density problems, so she advised me to discuss this with his neurologist. She also stated that although she liked his new AFOs, they may be a bit too rigid in the forefoot putting some pressure on his tibias. Since it's showing osteopenia, this could cause some stress reaction in his bones which could lead to some swelling.
Oct. 18 we went to Dr. Yang, Epileptologist/Neurologist. She understood our concerns and commended me on the direction I have taken to address them. She agreed with checking his kidney functions and was happy to see that his labs revealed they were fine. She understood Dr. Vergun's theory about the medication causing bone density issues, but believes he hasn't been taking this medication long enough to cause the amount of osteopenia showing in his feet. She believes the swelling is neuro-vascular changes (poor blood flow) that are consistent with peripheral neuropathy (nerve damage). This is common for patients with Spina Bifida-Myelomeningocele. In other words, "the nature of the beast!" She recommended elevating his feet and consider taking Gabapentin in the future if the pain becomes severe. She was pleased to find his seizures have been better controlled (he hasn't had a seizure since June) and is deferring the surgical evaluation for now. 🎗
This year Rayden is in a Self-Contained Class for Exceptional Children. There are only 8 students in the class. His teachers are Mrs. Lea Bennett and Mrs. Ellen Blackmon. I pray Rayden will be able to get the one-on-one attention he needs to grow academically. Of course, he has an IEP with many accommodations in place. He will continue to receive Physical Therapy, Occupational Therapy, and Vision Therapy at school as well as private OT, VT, and Karate. I work with him nightly on sight words, basic phonics, handwriting, comprehension, and mathematics. Rayden is super bright. He has more common sense than some adults I know, and a better vocabulary than most kids his age. I just pray he has reached a point where academics start making sense and he is able to retain information. I have no doubt that Rayden will grasp reading. He just needs a little more time. Rayden is fearfully and wonderfully made and God has big plans for him.
Rayden's Orthodist, Bob, decided to change his set up to some Custom Floor Reaction AFO's with side elements instead of the carbon fiber ones. The twister cable is no longer attached to his shoes. It is attached to the AFO allowing him to wear store bought shoes. Originally, he was going to get black, but when Bob found out they had camo he knew Rayden would love that. He also says these are so sturdy that Rayden will not be able break them. We shall see!
Rayden was thrilled to choose his own shoes at the mall. He chose a pair of Sketchers that look like a Nintendo Switch and another pair that light up with green lights when he walks. It's amazing how well they slide right over the AFOs.
It actually took Rayden several days to get the hang of walking in them. Everything was different; the way his foot planted, the weight of the AFOs and new shoes, and the pressure points on his legs. One thing we noticed right off the bat was how long he could stand in one spot without swaying back and forth to maintain his balance. His knees were actually straight instead of slightly bent as well.
We saw Dr. Theodore Yip for his mobility check up because Dr. Alexander was out sick. He completed the school forms regarding Rayden's emergency epilepsy medication, bathroom needs, and physical limitations. His biggest concern was Rayden's BMI of 89th percentile. Children whose weight and height exceeds the 95th percentile are overweight, and those who fall between the 85th-95th percentiles are of concern. Dr. Yip would like to see Rayden below the 50th percentile so he is making a referral for a video visit with a Nutritionist. Children with SB usually grow at the same rate as other children but they are not as active due to mobility limitations. At least half of children with SB are overweight by 6 years old. This can cause greater health problems. Mainly, it makes it more difficult to move around and maintain balance on weak legs and feet. It can also put more pressure on the skin causing it to breakdown. Looks like we have some work to do.
Two toned kidney. Dark/light
Dr. Jada Dillner, Pediatric Urology PA, discussed the results of the renal ultrasound from today. His kidneys look normal but are showing some different color patterns so she wants to get updated blood work. Wendy said she would request the special team ahead of time so we don't have to fight them about his tiny veins. His bladder wall is thickening and there is minimal trabeculation, which are both normal for neurogenic bladder. Since he hasn't had a urodynamic study in 3 years, she would like to schedule one soon. We have been considering the MACE surgery in the future to help with flushing the bowels, so they need to decide which surgeon may need to use the appendix the most, or if they need to combine surgeries. We are switching to adult sized catheters for the Peristeen as well.
Dr. Narotam, Pediatric Orthopaedics, discussed Dr. Vergun's plan for surgery when he is closer to 10 years old to straighten his legs and get him out of the twister cables. Although he found no curvature of the spine, he is going to continue to monitor him closely because boys tend to start showing signs of scoliosis between the ages of 10 and 12. His surgical scar is well-healed with no erythema or swelling. There is some slight prominence in the midline lumbar vertebral area where there is a slight drop off without significant asymmetry. The musculoskeletal exam shows hip abduction is about 30 degrees on both sides. The internal rotation differs though. Right is about 90 degrees versus 60 degrees on the left. His knee flexion contractures are less than 5 degrees on the right and completely absent on the left. He rests on the heals on both feet when standing and walking without his AFOs. Even though we have always done it, Dr. Narotam reiterated that we hold his hands when he is walking without his AFOs, like after a shower or getting out of bed. This can only be done for short distances. He noticed he is walking on the inside of his right foot and recommended his new AFOs go completely around the ankle for more support. He would like to do a video visit after we get his new braces just to see how they fit.
Dr. Hildebrand, Neurosurgeon, discussed Rayden's MRI from today. His new, nonprogrammable delta 1.0 valve is working properly. The MRI demonstrates stable, well decompressed ventricles. She briefly discussed the process for epilepsy surgery should this be required in the future.
Rayden thoroughly enjoyed our time at Myrtle Beach. He loved digging in the sand, and looking for shells. We actually found 3 shark teeth. The resort had 2 lazy rivers and 4 swimming pools. It also had an amazing restaurant where we enjoyed breakfast most mornings. We went to Dave and Busters to play arcade games, and The Track Family Fun Park to ride go-karts and blaster boats. We went to three different evening activities, The Charles Bach Wonders Magic Show, Riga Tony's Murder Mystery Dinner Show, and the Alabama Theater. Rayden's favorite was the magic show. He literally sat on the edge of his seat with his mouth wide open the majority of the show. I was even called to the stage for some tricks. The magician made my watch disappear. He was amazing. Michael and Papa took Rayden fishing one evening. He was able to catch two little sharks. He was thrilled. I'm so thankful we were able to spend this family time together.
Our appointment with Dr. Qian-Zhou Yang, Pediatric Epileptologist at UNC, was extremely informative. It took over an hour because she was very thorough, which we appreciated. She reviewed SOME of his complex medical history and even took the time to watch the short video clips of his seizures. In her little exam she was quick to notice that his right eye was his dominant one even though he is left handed. She confirmed his diagnosis of poor peripheral vision and his left eye turning inward. As she viewed his MRI's and EEG's on the computer, she pinpointed and explained everything alarming. She pointed out the large, white area of hydrocephalus, which we have seen numerous times before. Then she pointed out the gray spots both inside and outside the white area. This is polymicrogyria, which I had never seen. They are scattered all over his brain but more being on the left. The white area should not have ANY gray spots in it. She said they believe the gray areas are what seizes. Since there are so many gray areas in his brain it will be very difficult to pinpoint exactly where his seizures originate. To complicate things even further, one gray dot could be misfiring and soon the others will decide to copy it, like the old saying "one bad apple can ruin the entire bushel."
The language center is usually on the left side of the brain. Since he is able to talk just before he has a seizure, this makes her suspect they begin in the right hemisphere. His eyes go the left during some of his seizures which is a second reason for suspecting onset in the right hemisphere. She said all seizures are like sparks that can turn into a fire. So if he has little sparks they are small seizures from one area of the brain. A full body convulsion seizure would be the fire, meaning it has spread into larger areas of the brain.
She concluded that his seizures are likely focal onset with secondary generalization. However, with diffuse polymicrogyria and multifocal sharps there are many potential culprits. His current medication, Lacosamide, is a good choice for focal seizures (one area of the brain). Since he has multifocal (many areas of the brain) she believes he needs a low dose of a broader spectrum medication like Zonisamide as well. If he has any breakthrough seizures while taking these two medications, she recommends admitting him into the hospital (Phase 1) for about a week. During this stay he would be attached to the EEG, taken off his medication, and monitored by continuous video in hopes to capture and record seizures. She discussed the many other phases needed before they would consider epilepsy surgery. 2-PET CT with sedation, 3-MRI brain with and without contrast, 4-Resting state functional MRI brain, 5-Neuropsychiatry testing before and after surgery, 6-Neurosurgery appointment, 7-Stereo EEG hospital stay (implant probes in brain) to record more seizures, 8-Recommendation for epilepsy surgery. There are three types of epilepsy surgery; laser therapy, neuropace implant device, and resection. It sounds like a long, tedious process but they want to be as precise and accurate as possible in finding the small area of brain where the seizures are coming from. Seizure networks are like tumors. Over many years, they settle into the brain and become harder to control. They also spread to other irritated parts of the brain. Usually, the earlier a child has epilepsy surgery, the more likely they will have a seizure free outcome. Younger children also recover more quickly from brain surgeries than adults. Please help me pray that together, these two medications will keep him seizure free so he doesn't have to go through all of that!!!
8pm, Our long day was over, and our evening routine was well under way. Rayden was on the couch preparing to get in the shower when, all of a sudden, he wailed in pain. I looked over to find his hands on top of his head as he wailed again. I asked if he was alright, but he didn't answer. I immediately jumped up and ran to his side. I quickly realized he was having a seizure when I saw the glaze in his eyes. He stiffened up, closed his eyes, and began choking on his saliva. I grabbed my phone to start a timer and moved the sofa pillow so I could lay him on his side. I called Alex on his cell phone because he and Michael were in the garage. When he answered, I gave one remark, "Rayden, NOW!" They were by my side in one second. Michael got the emergency medication, while Alex began to monitor Rayden's breathing. I continued to watch the timer and reassure Rayden that he was alright. He never stopped breathing this time, although it was very shallow with long pauses in between. Around the 3 min mark, his eyes began to blink and open a tiny bit. He was shaking his head to my questions and looking at the person I asked him to find. He wanted to go to sleep but I needed to know he was alright first. We asked him to count to 5 and tell us his entire name. He was able to do that so I allowed him to go to sleep on the couch while I sat right beside him for the next two hours.
June 21-Dr. Carolyn Zook-Lewis, Pediatric Neurologist
Studies suggest that medicines fail to control epilepsy in approximately 20-25% of children. When a person has failed to stay seizure free with two anti-seizure medications they call this drug-resistant epilepsy. It is then important to be seen by an epileptologist to evaluate why, and if there are better treatment options. Rayden has already maxed out one medication and is now having break through seizures on the second. Dr. Zook-Lewis referred him to an epileptologist to review his case.
June 13-Dr. Anna Vergun, Pediatric Orthopaedic Surgeon
Right Leg- Rayden has external tibial torsion in his right leg. He also has some forwarding residual club foot countering the external twist, causing the fibula bone to stick out of the back. The bone is very prominent making a curved look in the back of his ankle. At this time, we are not doing anything to correct this.
Left Leg- His left leg has NO external rotation so it's hard to make the joint move and stay forward. This is why his left leg rotates inward when he walks. We are currently treating this with a twister cable attached from his left AFO to a hip belt.
-The surgeon recommended working on flexibility and stretching external rotation of his hips on the left side. She recommended corrective surgery when he is almost finished growing to prevent stunting the growth plates, around 13 years old.
June 15- Dr. Austin S. Rose, Pediatric ENT
Rayden was diagnosed with strep throat 4 times in the past 4 months so Dr. Mary Ann Chiodo, Pediatrician, referred him to the ENT for possible tonsil removal. Taking into consideration that there has been an unusually high volume of strep this season, as well as Rayden's significant surgical history and recent seizure episodes, the surgeon recommended watchful waiting for additional strep over the next 1-2 months. Should episodes persist, he recommended performing a tonsillectomy and adenoidectomy in the near future. We found it admirable that he didn't want to put Rayden through another surgery when he had every excuse to do so.
Rayden made lots of friends this year but his favorite ones to play with were Skye, Makenley, Amy, Rebecca, and Arthur. They included him and didn't treat him any different. He loved PE, Art and Music. His teacher, Mrs. Sarah Gutierrez, was very loving and caring. He worked very hard to earn two desk pets (🐷 and 🐸) with food (🍓 and 🟠). Every morning he would wake them from their sleep inside his desk to sit on top for the day while he was there. He was serious about taking care of them. 💙 He completed all his homework and recorded over 150 books in his reading log! At the Awards Assembly Rayden received a medal for the 100 Book Club, and a certificate for Student of the Month for Courage. We are so proud of his hard work and determination.
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