March 19, 2020 "Dressing up for school"

Rayden enjoys dressing up. When he got the chance to do it for school it was even more special. The only problem is he expected to dress up every day! 

Favorite Book Character Day

Camo Day

Pajama Day 

Career Day 

St. Patrick's Day with Harrison Raines

Crazy Sock Day 

March 6, 2020 "Opthalmologist Appointment"

Rayden had not seen Dr. Grace since this past summer. I could really tell a huge difference in him from his last visit. He would not cooperate or tell them anything the last time we came. Dr. Grace couldn't even examine him really. This time he was amazing. I didn't have to hold him down or even have him sit in my lap. He covered his eyes accordingly and told each exam assistant everything they needed to know. He sat perfectly still for Dr. Grace to examine his eyes. She said his optic nerves are still swollen (permanent damage, so not surprising). His prescription is 20/60 right eye and 20/80 left eye. With this vision he would need to continue wearing his glasses to read/write. She seemed more concerned with his left eye. Although Rayden had strabismus surgery on his eyes and we have been patching four hours a day, it is STILL drifting inward. She believes his left eye should be doing as well (responding to treatment) as his right eye but it isn't. When she had his right eye covered she showed him a picture but he said he couldn't see it. She asked him numerous times and he tried hard but couldn't. When she gave up and uncovered his right eye, he said "Oh, it's a Christmas tree." He can clearly see much better with his right eye. She believes this is also the root of his fine motor problems. Due to this lack of improvement she is referring him to Dr. El-Dairi, Pediatric Neuro-opthalmologist, to get better optic nerve pictures at the main Duke office. Her theory is the prolonged high intracranial pressure on his optic nerves before birth has caused more permanent damage to his left side and there really isn't anything she can do to correct it. Here again, Rayden writes his own book. He is just so unique. I'm very thankful to have such wonderful doctors that work so well together and have genuine concern for his well being. I don't know what the future holds for Rayden with his vision, but I know God has a plan.

February 20-21, 2020 "Blippi concert and snow"

BLIPPI--We bought Rayden Blippi Live concert tickets for Christmas. He has been awaiting this day for months. Even though school was released early due to snow, we were not going to let that stop him from seeing Blippi. We left home around 2:30 and it was snowing very hard by the time we reached the DPAC. We got soaked walking across the street to a restaurant. Rayden couldn't do anything but laugh! After a quick meal we went back over to get our seats. Even though Mrs. Dudley, a sweet teacher at MES, had already bought Rayden a Blippi t-shirt, Michael just had to get him a hat, suspenders, bow tie and glasses. He was adorable and full of excitement. Blippi actually came down the isle right in front of us, noticed Rayden, and stopped saying "Hey, you look just like me!"
Rayden was super excited the entire concert continuously saying "Look Daddy!" Priceless! Of course, by the time we exited the concert the van was covered in snow! It was a long, slow, scary drive home but we made it a wonderful memory for Rayden and I am so happy he was able to experience it.

SNOW- Rayden was still overly excited when he woke up because there was snow all over the ground. It wasn't a lot (just enough to make a kid happy). I got him all dressed up in his snow pants, coat, furry hat, gloves, and boots. He enjoyed singing "Walking in the snow" and throwing snowballs at Mommy.

February 14, 2020 "New AFO's fitting"

Rayden always enjoys going to see our orthodist, Bob. He only gets new AFOs once a year, therefore he forgets the process. He got a little upset when getting fitted this time but I honestly think it was because of his recent hip surgery and long time in casts. We reminded him that Bob will place the wet plaster on his feet and legs. When it dries he will 'zip' it off. He seemed alright with that but watched him like a hawk the entire time. Bob is so good with Rayden. He can replace Rayden's fears with laughter very quickly. Even though he can choose ANY color under the sun, Rayden decided to have green AFOs again. I thought for sure he would choose red because that is his favorite color. I asked him over and over. Bob even showed him lots of different patterns and colors but he continued to demand green. Therefore, green it is!

January 30, 2020 "Surgery #14-Removal of hardware in hips/femurs"

We arrived at the Ronald McDonald House around 5:30 Wednesday night. Rayden immediately noticed bundles of white roses near the front door. He grabbed some and brought them to me saying "I love you, Mommy." You could hear the whole house saying "Aww!" That boy can be the sweetest thing! After choosing a toy in the Kids Korner (Lite-Brite) we enjoyed a 'buffet' McDonalds dinner in the dining room. What a treat.

Rayden was scheduled to arrive for check in at 6:00 am. He
gave out quick kisses and hugs to Nanny, Papa and Granny before we entered the Pre-Op area. I suppose UNC is just so familiar to Rayden because he seemed alright with the whole thing until we got back there in a room. He started asking why we were there and refused to sit in the examining chair or take off his clothes. After the nurse, anesthesiologist, interns, and nurses all did their rounds they gave him the versed to make him sleepy but it didn't seem to work as well as last time. He was way too aware of what was going on.

At 7:30 Michael and I gave him kisses and I placed him in the wagon. I guess the medicine at least did enough to not make him care that he was leaving us. But he still wouldn't take off his Cabelas hat! After eating breakfast in the cafeteria, we all went back to wait in the hall near the Operating Room. At 8:20 the OR nurse called to inform me that Rayden went to sleep well and the orthopaedic surgeon was getting ready to begin the procedure. By 9:30 Dr. Vergun met us in the hallway saying that all went well. She said that she placed numbing medicine in his hips so that will help with the pain for the remainder of the day but we may want to give him Oxycodone for a day or two. Other than that Tylenol and Motrin should be sufficient. Although she expects Rayden to bounce right back, she wanted him to stay out of school for the remainder of the week and next week. He can resume walking as he tolerates it but we were cautioned to not allow him to climb or do anything that would result in a hard fall because there are holes in his femurs that can shatter. We were instructed to only sponge bathe him for the next week allowing the bandages to stay on his hips for maximum healing.

Plates and screws in Rayden 

At 10:00 Michael and I were both allowed to go back into the recovery room to see him. He was still in a deep sleep but the nurse really wanted us to wake him up. She went over the instructions and handed us a specimen jar filled with the plates and screws that they removed from Rayden's hips/femurs. Soon Rayden began to stir a little but wouldn't take any juice so we put his clothes on and were out of there by 10:30.

He continued to sleep on and off the entire ride home only waking to make sure Mommy was holding his hand. Precious. When we arrived home I noticed he had a large circle of blood on his right bandage. I believed it came from the car seat pressing against his incision so I took a picture of it so I could see if it was continuing to bleed. Thankfully the circle of blood never got any larger. He slept on and off the remainder of the day and only ate a tiny bit. He never complained but was asking why his legs were tingling. I was so exhausted that I slept through the alarm to give him his pain medicine at 2am so by 5am he woke up screaming and moaning in pain with a temperature of 102.5. Pitiful! I felt so guilty. I gave him meds and laid down with him. The medicine finally kicked in and he slept until 7am waking in a much better mood. He refused to get up and walk but I told him he could as long as he was holding someone's hand. He was very scared, but took a few steps Friday holding my hand. He seemed very wobbly and in pain.

Lite-Brite

Rayden continued to have a low grade fever between 99-101 throughout the weekend. We gave him the Oxycodone Thursday and Friday for pain control and continued the Tylenol and Motrin throughout the weekend. He began to take more and more steps holding our hands throughout the weekend. He continued to be wobbly and scared but didn't really seem to be in pain anymore. Michael and I can't really decide if he is in pain when he walks or if it is just because he KNOWS the bandages are still on his hips.

A real interesting note: Rayden began telling us about his surgery experience this weekend. Apparently he remembers the wagon ride. He told us the people with the masks took him out of the wagon and laid him on the bed. He said they were talking to him and he didn't cry either. I asked him if they put the gas mask on him but he said no. I guess that's all he remembers. We explained the surgery to him. He seemed to understand asking if they used a "drill and scalpel." He's such a smart, strong, brave, sweet little boy.

January 6, 2020 "Pressure Sore"

We took Rayden to his orthodist for a new AFO fitting on Thursday, 1-2-20. When I took his sock off a pressure sore was revealed on his right ankle. Rayden's anatomy is not like everyone else and his tibia bone sticks out at his ankle so it had been scrubbing his AFO for a while. Bob, his orthodist, placed a doughnut inside the AFO to prevent the scrubbing months ago. I had noticed that his ankle was getting aggravated but I dismissed it because I knew we already had an appointment to get new AFOs. It certainly was not this bad or I would have taken his AFOs OFF! After our visit with Bob, I immediately contacted his orthopaedic surgeon, Dr. Anna Vergun, to get advice. With his ongoing respiratory issues and fever (he had been fighting bronchitis for three weeks now) she recommended we go to the ER. Our PCP, Dr. Mary Ann Chiodo, worked Rayden in Friday, 1-3-20, at 11:00 in hopes of preventing a trip to the ER. She ran some tests and found that Rayden was negative for mono, but positive for Flu A! (yes, he had a flu shot) His white blood count was fine, lungs and ears were clear, so she didn't feel the need to rush him to the ER. Even though he had already completed a round of steroids and antibiotics a week ago for bronchitis, she prescribed Sulfame-temp 200-40mg twice a day along with foot soakings twice a day.

Dr. Mary Ann called me every day throughout the weekend and wanted to see him again on Monday morning. After Sunday's picture (1-5-20) she decided that he may need a debridement of the wound. She would probably send him to the wound care clinic in Dunn to do this. With his wound being so close to the bone she recommended that I contact his UNC surgeon for advice first. Dr. Anna Vergun called me early Monday morning, 1-6-20, to admit that she DID NOT want anyone else cutting on Rayden's feet because she knows him best. She wanted to do an X-ray of the ankle before proceeding. So we went to UNC. X-rays revealed no infection and Dr. Vergun believes the infection that WAS in the abscess is gone now. She wants us to continue soaking and taking the antibiotics. She also wants us to be extra cautious about his feet, taking his AFOs off every 30 min to look for redness now that they were altered to accommodate the pressure sore. His hip hardware removal is still scheduled for Jan. 30th and she even mentioned the internal rotation of his left leg/foot that our orthodist was referring to last week. She mentioned three different surgical corrections (foot, tibia, and femor rotation). She ran through each scenario. She even mentioned rotating the femor on Jan. 30 (while she was going in there anyway) and putting in a metal plate that did not have to be removed. We really don't think his internal rotation is that bad right now to warrant putting him through another intensive surgery, therefore we are going to try derotation straps instead.

December 25, 2019 "Christmas"

December 14, 2019 "Shriner's Christmas Party"

Rayden always enjoys the Shriner's Christmas Party so much but this year was the BEST yet! He loves the clowns and refers to them as 'my clowns'. All Rayden kept asking for was to 'become' a clown. When I reported that wish to the Shrinettes a week before the party somehow they made it happen. We were overwhelmed with emotion when they gave Rayden a special box to open. It contained an adorable, little red clown suit that was just his size. He immediately wanted to put it on. But the surprises didn't stop there! Boo, one of the clowns, brought in his face painting box and sat down to transform Rayden into the newest Shriner's clown. We were all completely stunned watching Rayden sit there that long and not even budge! He enjoyed every single second of it. One clown came running in with a Dunn Sudan Clown hat and another went home and returned with a genuine red clown nose! But the best is yet to come!!!

All the clowns escorted Rayden outside to the parade bus. The music was blarring and Rayden immediately transformed into a real clown! His adorable dancing melted every heart in the parking lot! They even allowed Rayden to climb aboard the bus (only REAL clowns can do that!) We enjoyed a nice meal, games, cake walk, crafts, and of course, Santa. I hope these wonderful clowns know how much they mean to Rayden and just how much they made him smile. He talked about becoming a clown to everyone he saw for weeks after and continuously asks to watch the video on my phone. PRICELESS!!!

November 25, 2019 "Surgical Consult"

Rayden had to see his orthopaedic surgeon, Dr. Vergun, and get new x-rays of his hips before removing the hardware in January. He actually stood up for x-rays this time and wasn't as scared. Daddy is always able to entertain him during the very long wait to see the doctor.

Dr. Vergun stated that the surgery to remove the hardware should only last about an hour and he should go home the same day. He will be able to walk immediately (as tolerated), but she doesn't expect him to 'want to' for a day or two due to pain. She advised us to be hyper vigilant about NOT letting him fall down due to the fact that there will be holes in his bones when she removes the screws. Now that is going to be hard! Once Rayden is feeling better and is able to walk again he will not want to be careful! He is a boy, ya know!!

October 26, 2019 "Fifth Bday Party"

Rayden turns 5!!

It is so hard to believe our little miracle is 5 years old. He has brought so much joy to our lives. I am so happy that he enjoyed his party at the Plainview Fire Department. He and his friends all received fire helmets, coloring books and were able to explore the entire fire station on their own. They climbed into every single truck and ambulance and were even allowed to turn on the sirens (a little boys dream!) 

Fire Chief Rayden

Using the radio

 

October 24, 2019 "MES Fall Festival"

MES Fall Festival 

Rayden had a blast at the Fall Festival. He enjoyed all the wonderful games and the cake walk. I thoroughly enjoyed watching the smiles on his face as he played each game and walked around the gym with his walker without any problems. He was also crowned the Prince of his Pre-K class for raising the most money.

September 26, 2019 "SB Clinic"

HIGHLIGHTS::

-Sensory processing issues as to why he continues to NOT understand portion control, cram his hands in his mouth, pull on his hair, and not like getting his hands dirty. Apparently it is typical of Spina Bifida patients. 

-Referral to Neuropsychology for formal testing and evaluation. 

-Referral to Urology to get a urodynamics study to evaluate bladder incontinence with possible upcoming surgery.

-Referral to psychologist to help him cope with his OCD and how to cope will all the changes in his life. (new school, new people, brother leaving, our house being remodeled) Also recognized that he is super intelligent and he's starting to notice he is different from others and he needs coping mechanisms to deal with his differences. 

-Upcoming brain MRI and x-ray of shunt series. 

-Upcoming spine x-ray because ortho noticed curvature. Mentioned spine bracing, but nothing right now. Also mentioned his left foot may need another surgery. His left hip muscles are not strong enough to keep him from rotating inward so we need to focus on his left side. 

-Surgery to remove hardware in his hips will be scheduled for January. This will be his 13th surgery. 

He makes living with Spina Bifida look easy, but people don't realize it takes a lot to stay on top of his care.

May 18-August 26, 2019 Summer Happenings

May 18- North Carolina Zoo

Rayden really enjoyed his first trip to the NC Zoo. He walked for about an hour and then got really tired. He got in and out of the stroller and enjoyed the fact that he and Daddy were wearing their "zoologist hats."

May 28-Chef Rayden 

Rayden is so passionate about cooking. 

Rayden doing his homework. 

July 31-Bible School 

August 26