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.