July 13, 2024 "Summer Happenings"

June 8 Rayden has been asking to help Daddy and Alex with the yard work for a while now. This kid has always loved to help work! I'm sure it will subside one day, but for now, we encourage his determination. We don't feel comfortable with him using the lawn mower or weed eater yet, so we bought him a light weight leaf blower. He could hardly wait to get out there and blow the grass clippings off the driveway. He 'had' to have safety glasses, and ear buds like Daddy and Alex too! 

 

June 15 Gobbles & Grunts 4th Annual David Henderson Memorial Pan Fishing Tournament. There were a total of 35 boats in the competition on the Cape Fear River. We caught a lot of pan fish, but not enough to place. Michael was in the running for biggest trash fish when he caught a blue catfish weighing in at 4lb. 13oz. The winner's fish was 4lb. 13.5oz. So close! 

June 18-19 Rayden participated in the 4H Pond Monsters Challenge Fishing Tournament. Thank you Gobbles & Grunts for allowing him to borrow your track chair this time. The fish at Taste of Heaven Campground were not very active in the heat, but everyone managed to catch a few small ones. Rayden won second place with 2.75lbs, bringing home a new rod and reel, hoodie, and tackle. First place was very close with 3.0lbs.    

 

June 26-July 13 Rayden developed an interest in growing things when he planted and nurtured a flower at school for Mother's Day. Daddy and Alex built him a little (above ground) garden. Even though we got a late start, we were able to get some produce out of it. 

May 18, 2024 "Spring Happenings"

Rayden is one busy fellow! We are working hard to make memories and focus on the joys of life. 

April 8-Solar Eclipse

Total Solar Eclipse

April 10 Special Olympics

April 13 Judging Shriner's Clown Competition 

April 19 Playground Fun

May 2 Field Day 

May 18 Gobbles & Grunts Fun Day

  Rayden has actually been feeling really good since we returned from Disney World. He no longer complains every day about his legs/back hurting. He doesn't ask for his wheelchair. It seems as if his pain is gone. Therefore, we decided to cancel his tethered cord surgery in June. Thank you God for answering our prayers. 💙 

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!

You can feel the excitement of everyone in the blind when this Tom turkey came running toward the decoy. He put on a good show, attacking the decoy over and over with his giant spurs. The guys tried to be so quiet loading the gun, that when Rayden tried to take the shot it didn't fire properly. This happened several times. Even though the turkey heard the clicks, he never left! It was like God told this Tom he was going to be Rayden's trophy today, no matter what, so he just waited. When Rayden fired the shot, the turkey jumped up and tried to fly to the woods. He only made it to the edge before landing. Another Tom turkey came running toward him. When Hunter and Ty got to the shot turkey, he was being attacked by the second Tom! Rayden, Alex, and Uncle G were sitting at the blind waiting for the results. When they held up Rayden's trophy turkey, he couldn't contain his excitement. He began to run across the field. Of course, this wasn't very successful, so Alex picked him up and carried him over to see his kill. Everyone was bubbling with pride!

 

After taking some measurements, and pictures at Jeff and Dana Jones house, we decided to drive Rayden and his prize turkey to Greenville for the 2024 Youth Pirate Classic.

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

April 13, 2025 Finished Turkey

 

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

Capt. Brett Isackson took the guys out for a 6 hour Iguana and Peacock Bass outdoor adventure. Rayden was super excited. He loved EVERY SINGLE THING about this day; shooting pellet riffles, fishing, riding a boat, being outside, and spending time with his favorite people. Actually killing 6 iguana and catching 6 Peacock Bass were just icing on the cake. We had to purchase a large, styrofoam cooler to transport their trophies home for mounting and cooking. They cooked the iguana many different ways; fried, grilled, and sauced. Everyone said it was surprisingly good and tasted like chicken or frog legs. 

Plantation, Florida

 

March 1-8, 2024 "Disney Vacation"

I can't put this week into words. After such a horrible experience last year, I am relieved to report we had a MAGICAL TIME at Disney World. "Give Kids the World" provided Rayden with Memory Maker (all photos taken on site), 3 park tickets each (child and parents), and a Wish Pass (preventing us from standing in long lines). Between the Wish Pass and DAS Pass we didn't have to stand in line at all! We were able to ride everything we wanted (sometimes twice), and went straight to the front of every character meet and greet line as well. AMAZING!!! We had reservations to eat with characters at the Garden Grill at Epcot, Tusker House at Animal Kingdom, Chef Mickey's on our rest day, Liberty Tree Tavern at Magic Kingdom, and 50's Prime Time at Hollywood Studios. We also attended the Fantasmic Fireworks show at Hollywood Studios and had premier seating at Magic Kingdom, directly in front of the castle, for the Post-Fireworks Dessert Party. 

We were worried about Rayden driving a scooter around in such large crowds, but we certainly didn't want to push him the entire time either. He wasn't old enough to drive Disney's scooters, so we brought Nanny's personal one instead. He was a remarkable driver. He followed me around, drove slowly, and didn't run into anyone...but me! 

  

 

 

 

 

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. Unfortunately, I never received a follow up call, even after I left a couple of messages and sent a few emails. 

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...