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. 💖