April 10-14, 2024 "April Happenings"

 Rayden has actually been feeling really good since we returned from Disney World. We have been considering canceling his tethered cord surgery. 

April 10 Special Olympics

April 14 Shriner's Clown Competition 

April 6, 2024 "Turkey Hunt"

Rayden harvested his very first turkey this morning! It’s a fabulous bird too! Thanks so much to Kitty Fork Outdoors, Jeff and Dana Jones, Gerome Heath, Ty Hunter, Hunter Britt and Alex. Everyone put their heart and prayers into this hunt and we can’t thank them all enough!

WINNER, WINNER!!! Rayden’s Turkey won 9th place out of 61 over all. He was the 4th heaviest bird!! (286 kids signed up)

March 9-12, 2024 "Iguana Hunting and Peacock Bass Fishing"

 

March 1-8, 2024 "Disney World"

February 27, 2014 "Shriner's telemedicine visit"

Rayden and I had a telemedicine visit with Dr. Marcus Cox, PA at Shriner's Children's Hospital in Greenville, SC. After reviewing his medical history and reason for making the appointment, he examined Rayden's back as best he could through the computer screen. He said there was no evidence of skin or wound breakdown at his closure/scar. He watched Rayden walk across the room and said he has a reciprocating heel toe gait with neutral foot progression angles using his twister cables. He also said he has a moderate amount of trendelenburg (sway from side to side) due to weak hip abductors. He recommended bringing Rayden into the Spina Bifida clinic for an evaluation with orthopedics and neurosurgery, particularly to get a second opinion regarding the treatment of his tethered cord. He discussed that given the logistical and insurance issues, it is unlikely that they could provide non-orthopedic procedures in Greenville. He would seek out information regarding neurosurgical options available within the Shriners system. 

February 17, 2024 "Rabbit Hunt"

Kitty Fork Outdoors hosted the 3rd Annual

Veteran/First Responder/Disabled Parent-Kid Rabbit Hunt today. Six organizations came together to make this event possible (North Carolina Handicapped Sportsmen, Battle-Scarred Outdoors, Veteran's Creed Outdoors Eastern Region Trips & Events, The Fallen Outdoors East Coast All Veteran Community Page, North Carolina Veterans Outdoor Official Page, and Kitty Fork Outdoors). They started the morning with breakfast, a safety briefing and a hay ride to the hunting spot. Rayden was all set in his track chair. Action started right away with the beagles jumping rabbits. One even ran out of the brush, around my feet, and back into the brush. I'm glad no one tried to take the shot! The wind picked up, making it harder for the dogs to pick up the scent but they still managed to get seven rabbits. Rayden never took a shot, but Alex killed one, nice sized rabbit. Everyone enjoyed a wild game lunch before shooting Michael's new rabbit skeet thrower. They rounded out the evening with some rifle training on the shooting table. Everyone had an absolute blast! 🐇

February 15, 2024 "MRI Lumbar and Thoracic Spine"

We left the house at 4am for Rayden's appointments today. I cannot believe how much Rayden has grown up. The technician wanted to start the IV contrast but after I told him Rayden was a very difficult stick, he decided to take him upstairs to the PACU. Once word got out that Rayden was there, a ton of nurses, orderlies, and doctors came to see him. (He made a lot of friends when he was going up there three times a week for 65 days!) Even though Rayden cried a little, he remained perfectly still for the nurse to get the IV in. No one had to hold him down or anything. He sure has come a long way! This MRI was expected to take an hour and a half. I never thought Rayden would lie still that long. I don't think I could lie perfectly still that long! The technician placed headphones and some big goggles on Rayden. He was able to watch The Lion King during the exam. I sat in a rocking chair at the foot of the machine just in case he needed me. Unbelievably, our little MAN, never moved a muscle. Honestly, I think he fell asleep. 

The MRI showed acute spondylolysis with associated bony edema, facet hypertrophy and a small synovial cyst all at the left L4 level. 

1- Spondylolysis and bony edema are fancy ways to say he has Spina Bifida. 

2-Facet hypertrophy is a non-curable problem that causes the facet joints in your spine to enlarge. New bone growth and bone spurs can also develop as the joint tries to repair the damaged cartilage. The swelling and new growth can narrow the spinal canal compressing nearby nerves, causing pain. 

3-A synovial cyst is a fluid-filled sac that develops along the spine. It may cause pain, tingling, or cramping in the lower back and legs. 

Dr. Elton, Pediatric Neurosurgeon, has always told us that the spinal cord of a person with Spina Bifida will always look tethered on an MRI. Therefore, he operated according to the symptoms and complaints, not the images. With all the pain Rayden has been going through lately and the progressive need to use his wheelchair, he recommends another tethered cord release surgery. This is the same one that resulted in a 65 day stay in 2021. Dr. Elton said due to all the complications he had last time, he would have other surgeons on stand by and go ahead and get plastic surgery on board as well. I asked about a recommended time line and he said we could wait until after our trip to Disney but he wouldn't recommend waiting much longer than that. He suggested doing it over spring break in April. Rayden remembers all too well the pain of this surgery and became overly silent and teary eyed in the office. I tried to show him my "brave face," but needless to say, my anxiety level escalated through the roof and I just needed to get out of there! I told Dr. Elton we would just call him back with a decision. 

When Michael and I had time to digest this, we decided to postpone the surgery until we are both out of school in early June. This would give us time to look up alternatives and get a second opinion from Shriner's Hospital in SC as well. I emailed Dr. Elton and asked if there was any other way to correct a tethered cord besides cutting open his back again. Could it be done laparoscopically or are there any new techniques or approaches? We just cannot allow Rayden to go through that horrific experience again. Dr. Elton responded, saying he understood our trepidation. He said the only other way currently, which he does not do, is spinal shortening. This is removing an entire vertebra and then doing a large spinal fusion with rods and screws. The idea is that you are making the spine shorter and not doing anything with the tether. It is a newer procedure so it is unclear if it is better. It is also a major surgery with significant risk of blood loss and spine fusion failure. He also said as much as he would like to promise Rayden wouldn't go through something similar to last time, there isn't a way to promise that. It isn't likely, and just because it happened before doesn't mean it will happen again, but it is still a risk. Not very reassuring...

January 29 & February 10, 2024 "Duck hunting"

January 29

What a great day in the swamp with North Carolina Handicapped Sportsmen and Kitty Fork Outdoors. As usual Jeff and Dana Jones rolled out the red carpet for Andrew Underhill and Rayden. Although the ducks didn't cooperate, the track chairs performed like tanks going through the swamp. What a wonderful invention to help adaptive sportsmen access the outdoors. Jeff spent this time working with Rayden explaining everything from gun safety, duck identification, and just basic swamp logic. They wrapped with a breakfast of deer sausage and eggs. MIchael, Jeff, and Alex took over working with Rayden shooting skeet out of the track chair. Luckily some of the fellow KFO members got some ducks and brought them over for Rayden to see. Jeff enjoyed explaining each species to Rayden.

February 10

Michael and Jeff took Rayden out again, hoping to harvest a duck this time. They didn't have the track chair, so they put Rayden in a canoe and pulled him across the swamp. He enjoyed putting out and collecting the decoys. Even though they did not kill any ducks, Rayden sure enjoyed spending time outdoors. 🦆

   

January 21, 2024 "Fox Squirrel"

Early this very cold, Sunday morning Michael and Rayden noticed a big, fox squirrel in our front yard. They quickly grabbed a coat and Rayden's 20 gauge shotgun he got for Christmas. Michael stood behind Rayden while he took a few shots into the pecan tree. The squirrel jumped from limb to limb, ultimately diving into a hole toward the top of the tree. Michael and Rayden came back inside to warm up. Michael cooked breakfast while I watched the squirrel peak in and out of the hole. It took quite a while, but the squirrel finally thought it was safe enough to venture out. Michael and Rayden were ready. They went back out, determined to get him this time. Rayden took two more shots while I was screaming from the front porch telling him "he jumped over here!" Finally, Rayden connected with the squirrel and he came tumbling down the tree. Michael went to pick it up while Rayden waited to admire his very first squirrel kill. He was super proud of himself and immediately wanted it mounted!  

It was very difficult for Rayden to wait for Hank Purvis to finish mounting the squirrel. He asked if it was finished almost every single day. We picked him up April 9th. Rayden is so proud that his squirrel is larger/heavier than Daddy's and Alex's. This trophy is hanging in Rayden's bedroom watching over his things. 💙

January 4 & 16, 2024 "Urology"

Jan. 4-After no real explanation for the pain from Orthopaedics, we began our journey with Urology. Dr. Ross requested an abdominal x-ray, renal ultrasound, and consult with Dr. Jada Dillner. Rayden is an absolute pro at getting these test, so he had no worries. I am so proud of him for actually telling Dr. Dillner about his pain. He told her how bad it hurt, the exact location, when it hurt and when it didn't. She didn't see anything alarming in his x-ray or ultrasound, and began to lean more toward tethered cord. She requested neurosurgery to consult. After examining Rayden, and feeling the exact location of his pain, she requested a sterile urine sample to send off for culture. Rayden was perfectly still during the urine collection. Dr. Dillner said the dip stick didn't reveal anything so she wanted us to get some blood work done. I went ahead and asked for the special team and honestly thought this was going to be another battle. The ladies asked to just look and they wouldn't stick if they weren't 100% sure they could get it. Rayden agreed, which shocked me! He was so relaxed. He just held out his arm and then started asking her questions about the blue line. She explained his veins and asked for a small needle. He held perfectly still, never cried, or jerked. She got the vein with the first stick!! I commended her over and over because I don't remember that ever happening before! I also praised Rayden for being so brave, calm, and still. I'm so proud of him. Dr. Dillner told us to leave after the blood work and she would call within the next couple of days if anything was alarming. She actually called on the drive home. I certainly wasn't expecting her to call me within the next 30 minutes!! She had received one of the blood test results and it revealed his chloride was high and creatinine was elevated. She said she wanted him to see a Nephrologist because she is worried about his Kidney function. This was very alarming to me. The next day I received an invitation to schedule a nephrologist appointment. The earliest appointment I could schedule was the end of April. I emailed Dr. Dillner, asking her if it was safe to wait that long. She told me to make the appointment and get on the cancellation list. She also said his Cystatin C (a measure of kidney function) is also elevated. Once we do his urodynamics study next week and have more information, if there is anything concerning she would try to get him in sooner. I decided to call the neprology office and ask for an earlier appointment. The receptionist was able to move it up to the beginning of April but nothing any sooner. 

From what I can gather, these are the alarming results from his urine and blood samples. 

            Chloride (blood) should be between 98-107. Rayden's was 111-High. 

            Calcium (urine) should be between 9.40-10.3. Rayden's was 12.8-High.

            Creatinine (urine) should be between 0.3-0.7. Rayden's was 39.3-High. 

            Cystatin C (blood) should be between 0.64-1.23. Rayden's was 1.06-Elevated. 

            Absolute Basophilis (blood) should be between 0.0-0.1. Rayden's was 0.1-Elevated. 

            Absolute Eosinophilis (blood) should be between 0.0-0.5. Rayden's was 0.5-Elevated. 

            Vitamin D should be between 20-80. Rayden's was 21.7-Low. 

Jan. 16-Urodynamics Study

A urodynamics study is a procedure that looks at how well the bladder, sphincters, and urethra are storing and releasing urine. It focusses on the bladder's ability to hold urine and empty steadily and completely. It can also show whether the bladder is having involuntary contractions that cause urine leakage. 

Rayden hasn't done this test since Nov. 12, 2020 (3 years ago). He didn't remember doing it before, so I wasn't sure how he would react to exposing his private area to three strange women. He actually did very well. Dr. Dillner went over a few things while administering the test, but discussed it more thoroughly when the test was complete. His bladder sensation and appearance was abnormal. The detrusor muscle function was overactive during filling but the pressures were overall low. His sphincter muscles are weak as well. This keeps his bladder at low volumes and pressures but leaves the bladder neck open at all times allowing leakage. 

Dr. Dillner says Rayden will need surgical intervention to obtain continence. She detailed two options. 

1-If we do it now, he will need a bladder neck sling and Mitrofanoff with possible bladder augmentation. 2-If we wait until he is older, he could get an artificial urinary sphincter with possible bladder augmentation. This option is less invasive. 

Michael and I agree that these options are too invasive right now. Dr. Dillner suggested pelvic floor physical therapy and medication to help minimize leakage until he is ready for surgery. There is an interaction with his seizure medication so we are waiting for his neurologist to suggest an alternative. In the meantime, she wants Rayden to learn  how to swallow pills by practicing with Mini M&M's. 

February 26

Dr. Elizabeth Kotzen, Nephrologist, said Rayden's lab tests in January were reassuring. She said his kidney function was normal and his Estimated Glomerular Filtration Rate (eGFR) was 120, which was beyond perfect! There was no protein in the urine testing either. She honestly didn't even know why we were there! She said it is a good idea to repeat the tests once per year because people with Spina Bifida are prone to kidney issues. She told me to keep an eye on his blood pressure. It should be 109/72 or less. If it is consistently higher than 115 she wants me to contact her office. We don't normally receive such great news at doctor appointments. This was wonderful to hear. 💖

December 27, 2023 "Eye Appointment and hip MRI"

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 25, 2023 "Christmas fun"

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. 

December 12, 2023 "Back pain"

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. 

December 9, 2023 "Kitty Fork Outdoors Deer Hunt"

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. 

 

November 17-19, 2023 "Gobbles & Grunts"

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. 

November 4, 2023 "More Seizures, #13-17"

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. 🧡💛

October 24-31, 2023 "Fun Times"

 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. 

September 7- October 18, 2023 "Foot Swelling and Pain Journey"

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. 🎗