December 5-6, 2022 "Seizures (9 and 10)"

December 5, around 3:00 pm. During car rider dismissal, Rayden began feeling bad. He looked up at me and started moaning like he had a headache or was going to throw up. I helped him stand up to take his coat off, but then he stiffened up and collapsed in my arms. I looked at Mrs. Dudley, Rayden's Kindergarten teacher, and said "I need some help!" She helped me lay him down on his side, started a timer, and told the other teachers to take the remainder of the students out of the cafeteria. Rayden's arms were stiff. His lips were clinched shut, and he was drooling. Even though we were talking to him, he wasn't responding. He stopped breathing about a minute in so I began rubbing his chest. Maegan Peterson ran to his classroom to get the emergency medication and someone went to the office to call 911. The assistant principal, Becky Hines, and the SRO came inside. Rayden's lips turned blue (I've seen this before), but then his entire face, head, ears, fingertips and skin turned blue! Mrs. Dudley said it had only been two minutes. I began to panic because I had never seen his entire body turn blue like that. I started praying and yelling, "Please, breathe!" Kassidy Cottle was on the phone with 911 telling them that she couldn't count his breaths because he didn't have any! It was so super scary. At three minutes Mrs. Dudley opened the medication and handed it to me. As I went to administer it, Rayden looked up at me. I was relieved, but wanted him to lay still until EMS got to school. Almost immediately Paige Dunn, our personal Paramedic (haha), drove into the parking lot. They checked Rayden out and we went home. Do you see God? 1- I just happened to be standing right there when he had the seizure. 2-The teachers that were specifically trained to help him were also right there. 3-Paige was our Paramedic. 

Deneice Elmore brought us dinner so we were able to eat early. Of course, we didn't realize this was the 4th part of God's plan at the time. Rayden and Alex played for a little bit before they decided to decorate some Christmas cookies. Around 6:00 pm Rayden looked up and said, "I feel weird. I feel like I'm in a dream." We helped him to the couch to lie down just as he began to have another seizure. He threw up a ton. Alex called 911 as Michael got his medication and turned on the porch lights. This one lasted 3 minutes as well. Paige checked him out again and recommended we take him to UNC ER because this was his second seizure in less than three hours. After EMS left, I called UNC to speak with the Neurologist on-call. He said we needed to add another medication. Since we didn't have any, he recommended increasing the current anti-convulsant medication. As I asked him what to do if Rayden threw it up, he began screaming at the top of his lungs that his head was hurting. He was moaning and holding his head. He was moving all over the couch and Alex couldn't comfort him at all. The doctor heard him screaming and changed his mind. He instructed me to give him the emergency medication. Normally it puts him to sleep within a minute but not this time! It didn't touch it. Soon the doctor recommended we take him to the nearest ER and they would get him to UNC. So I called Paige directly (skipping 911). Alex put Rayden in the ambulance. He was screaming with his head the entire time. Paige pulled some kind of strings and before I knew it, we were on our way to UNC instead of Betsy Johnson. Do you see God again? Alex and Michael packed a quick bag and were right behind us. 

Around 7:00 pm In the ambulance, Paige started an IV and had to give Rayden oxygen. He didn't even care about any of that. He just kept screaming in pain from his head hurting! I couldn't stand to see him like that. I placed my hand on his forehead and began praying for God to take away this horrible pain. "I speak the name of Jesus over you. I pray for your healing, that circumstances will change. I pray miracles over your life, in Jesus name."

 

It wasn't long before he seemed to just pass out. The remainder of the ride he was either screaming in pain, or passed out. I began to feel so helpless and panicked myself. Knowing my history of PTSD, Paige instructed her fellow EMT to give me oxygen. The panic attack passed and I just tried to sit calmly and remember that God was in control. About 15 minutes away from UNC, Paige wanted me to call the Neurologist back so she could talk to him. She asked if he wanted her to administer Kepra because she only had 1ml on the ambulance. He declined and said they would give it to him in the ER.

Around 8:30 pm Just as we entered the UNC ER, Rayden began throwing up. He sat up as best he could even though he was strapped to the stretcher. He threw up about four times, all over himself, the stretcher, floor, hallway and exam room. The nurse soon realized he needed a new IV. I tried to tell her that he would need the special team to do his IV. She said, "Great! I am the special team." Well, guess what...she tried twice with no luck! She decided to call the special team then! He came with an ultrasound machine and ended up trying twice before getting it too! I was amazed at how well Rayden took all these pokes (6). He didn't fight a bit. Did he realize he needed help that bad, or has he just grown up that much?..

Once the IV was operational, the ER doctor ordered blood work, Kepra, Acetaminophen, and Zofran; all administered through the IV. The Neuro-surgery team wanted to rule out his shunt so they ordered an X-ray shunt series and a rapid sequence MRI. When both of these tests came back normal, they recommended tapping his shunt to check the CFS for infection because there was an elevation in his white blood count. This is extremely risky within itself because you're opening up the shunt to possible infection! I was terrified this would happen, so I stayed and watched the entire procedure making sure she cleaned super well!! Here again, I cannot believe how incredibly well Rayden took this. I'm not sure if he was asleep, passed out, or just being that good, but he didn't move a muscle. I watched as she inserted that long needle (7) into his skull to draw some CSF out. It looked clear. She even tested the valve pressure and it was fine as well. I made sure she cleaned the site double when she was finished, and prayed for no infection to creep in. The shunt was completely ruled out as the culprit, when the CSF culture came back negative. The ER team decided to admit Rayden overnight as they introduced a new anti-convulsant medication on top of his current one. They gave him an IV loading dose of Lacosamide. 

December 6, Around 3:00 am Rayden got a bed in the short stay area of the hospital. Alex curled up in the bed with him as Michael and I took the bedside reclining chairs. I may have dozed off once or twice but by 7:00 am Rayden was awake and starving! He ate all of his breakfast and wasn't showing any side effects to the new medication so the team agreed to discharge him around 2:00 pm. 

December 12, 2022 I had a virtual phone visit with Rayden's neurologist, Dr. Carolyn Zook-Lewis. She wants Rayden to continue taking Oxcarbazipine 10ml and Lacosamide 6ml, both twice a day for another month. Then we will decrease the Oxcarbzipine by 1ml a week until he is only taking the Lacosamide. If he has a seizure while we are titrating this medicine off we will increase the Lacosamide. This is a tricky process and it seems to be something that we will continue throughout his life. 

December 3, 2022 "8th Birthday Celebration"

This year we decided to skip the party and take a trip to Winterfest at Carowinds to celebrate Rayden's 8th Birthday. We kept it a secret from him. That Friday, Rayden and I left school early. That was his first clue that something was going on. When he saw us loading suitcases into the van, he knew we were going somewhere to spend the night. He loves a hotel so that would have been surprise enough for him. When Nanny, Papa and Alex all loaded into the van his little mind was BLOWN! He talked the entire ride to Charlotte, trying his best to talk someone into telling him where we were going and what we were doing. We were lucky enough to get adjoining rooms at a hotel right on Carowinds property. The next day we had planned to attend the Fun Run before Carowinds opened for Winterfest, but it was raining. After breakfast at the hotel, Alex and I took Rayden to get our t-shirts and an impromptu trip to Cabella's to see Santa and pick up a pair of Crocs for Michael. 

Rayden is a new member of "A Kid Again", an organization that foster's hope, happiness, and healing for children with life-threatening conditions and their families. They provided tickets for us to attend Carowinds Saturday night. The park was only open to A Kid Again families from 3:00-5:00 before it opened to the public. It felt like we were there with only 300 people. Rayden was able to enjoy quite a few rides before the flood gates opened (pirate ships, roller coaster, mud buggies, bus, and jeep trail blazers.) He wanted Alex to ride with him on every one (no surprise). I think his favorite ride was the front seat of the Scooby-doo roller coaster. He joined along with the drummer boys show and thoroughly enjoyed the parade. We were able to see Santa twice, and take lots of pictures. Santa seemed confused when Rayden asked for a "half-kickin' shotgun". Rayden didn't miss a beat explaining.  

We all enjoyed watching the pure joy in his eyes, the sparkle of excitement in his voice, and hearing his sweet laughter. It's true what they say...seeing the world through the eyes of a child is the purest joy anyone can experience.  

When we got back to the hotel around 11, Rayden made the most precious comment. "I love you, and really appreciate all y'all have done for me this weekend." I have never heard him say anything like that before. My eyes filled with tears knowing that no one told him to say that, he genuinely enjoyed and appreciated it. 💖

November 19, 2022 "Shriner's Fall Ceremonial and Parade"

Rayden was asked to ride a float in the Shriner's Fall Ceremonial Parade. He was thrilled at the chance to do something with 'his' clowns. He thought he had to dress like a clown too. He settled for wearing his Shriner's hat and Boo just painting his nose. 

The Shriner's children float led the parade with one other family besides us. We rode down the strip waving at everyone. Rayden saw lots of people, but was thrilled when he found Nanny, Papa, and his friend from school out in the crowd. They parked the float right beside the MC of the parade. We were able to watch the remainder of the parade from the float, what perfect seats! Rayden enjoyed shaking hands and giving high fives to all the Shriner's clowns, pirates, animals, hillbillies, etc. 

Later that night we were asked to attend the Ceremony. Rayden marched in there like he was the guest of honor. He walked around shaking hands and talking to everyone. When it was time to begin, I had to chase him down and bring him back to the table. Everyone said he is going to be a politician or a preacher someday because he loves to talk and knows how to work a room!! They asked us to come forward and tell everyone our experience with the Shriner's Hospital. I tried to keep it brief but there was so much to tell. 💛 

November 10, 2022 "Spina Bifida Clinic"

 SPINA BIFIDA CLINIC 

HIGHLIGHTS:

Blood pressure: 108/69

Weight: 67lbs. 3.8oz (86th percentile)

Pulse: 104

-Referred to Dr. Hannah Allen for updated neuropsychological evaluation.

-Referred to Dr. Brett Miller, Director of Vision Therapy Services. She treats patients with learning-related vision problems and provides vision therapy. 

-Curvature of the spine looks good, but slight Galeazzi sign with right knee higher than left. This indicates leg length discrepancy and possible hip dislocation.  

-Referred to Dr. Anna Vergun, Pediatric Orthopaedic Surgeon for follow up.

-Prescription for bilateral forearm crutches to build upper body strength.

-Renal Ultrasound revealed kidneys and bladder remain healthy. 

-Referred to Dr. Michael Phillips, Pediatric Surgeon, to discuss Chait tube or MACE for bowel plan. 

-Return in 9 months. 

November 9, 2022 "Fall Happenings"

            Halloween Fun!

Family Reunion

Rayden thoroughly enjoyed spending time with family. Aunt Kathy, Uncle Gary, Carey, and Callie Jewell. 

Voting all by myself!

Rayden has been with us to vote a lot but this time HE wanted to actually fill in a ballot. He brought his "identification" and everything. He even wanted his privacy! Look at how he bubbled in EVERY SINGLE candidate! If you know him, then you know he must have been very serious about it to take the time to do that. Priceless!

Yellow Belt Rank in Karate!

Rayden worked so hard to learn his Japanese vocabulary. We drilled and drilled every night for his new rank belt. We are all so proud of him.

Sensei Charles Burrows has the most patience and creative ideas for working with Rayden. He loves Karate! We are so proud of his efforts and determination to work, even though it is challenging for him. 🎗🎗🎗

September 24 and 28, 2022 "Two more Seizures (7 and 8)"

September 24

At 4am I was awakened by Rayden mumbling "What?" twice. Then he began breathing hard and loudly. I walked to his room to find him choking and gasping for breath. I turned him onto his side and yelled for Michael and Alex. When I touched him, it seemed as if his entire body was shivering under the skin. It was a weird feeling and hard to explain. His legs were moving back and forth with small jerks but not violently shaking. He wouldn't acknowledge my questions and his eyes looked glassy and distant. After two minutes, Rayden looked up and said, "Go to bed Alex." We knew then that he was ok. I decided to lay down with him for the next 30 minutes or so just to make sure he was alright. Although all seizures are a serious issue, I'm so thankful that this event wasn't anything major. I just pray that God will continue to keep a hedge of protection over him. 

September 28

At 8pm, we were just getting back from my birthday dinner at Nanny's, when Rayden collapsed very hardly in the living room. He falls all the time and doesn't want anyone to help him so Alex and I asked from the kitchen if he was ok. He did not respond. Almost simultaneously, Michael came in the back door and picked him up saying, "No, he's not ok!" Rayden threw up all down Michael's shirt as he started to lay him on the sofa. His eyes were glassy and he had no control of his body. His head was bobbing like a newborn baby. He was slobbering and gagging like he was going to throw up again. Michael took him to his bed to lay him down. He wouldn't respond to our questions. Alex started the timer and we just kept talking to him. After about 2 minutes, he began to mumble but his speech was slurred. We couldn't really understand what he was saying. I asked him to look at Mommy, and he couldn't really control his eyes. I asked him to point to brother but his finger seemed too heavy to lift. After about 5 minutes of this, I decided to give him his emergency medication. He immediately went to sleep. I sat with him for about 3 hours making sure he was alright before going to bed myself. The next morning he seemed fine. Michael gave him a shower and we went on to school. 

This seizure didn't happen around his sleep pattern. It resembled the very first one he had back in August of 2020. I asked his Neurologist if the ADHD medication he began 2 weeks ago could have anything to do with it. Dr. Lewis said there is a slightly increased risk for stimulants such as Quillivant to cause seizures. Although, it is felt that the benefit of ADHD medication outweighs the low risk of seizures. She says it may have just been a coincidence and he was going to have a seizure anyway. She believes since he has been on the medication for a few weeks now, it is unlikely to be the cause. She wants to increase his seizure medication from 8.5ml to 10ml twice a day. (It was only 3.8ml 6 months ago!) If he has any additional seizures we will need to talk about another medication. 

August 25, 2022 "First Grade"

 Rayden is very excited to begin first grade. His new teacher is Mrs. Sarah Gutierrez. He will also receive instruction from Mrs. Maegan Peterson again this year. 

August 24, 2022 "EEG Results"

Dr. Lewis reported that Rayden's 24 hour EEG showed abnormal discharges occurring in multiple parts in the central regions of his brain (both sides=generalized seizures). The discharges were very frequent during sleep. They do not completely correspond with the area of the hippocampus, which was smaller (atrophic) on the MRI. After talking with the epileptologist, Dr. Lewis said the abnormal discharges are frequent, but not dangerous. Discharges do not cause damage to the brain, but ongoing seizures do. Since the discharges occur on both sides, the plan is to continue trying to prevent seizures with anti-seizure medication. 

The official report from UNC is difficult to understand but it is as follows: 

TECHNICAL DESCRIPTION:

AWAKE STATE: The dominant posterior rhythm is a medium amplitude 6-7 Hz activity with good reactivity. The background is comprised of predominantly mixed frequency theta, alpha and beta range frequencies.

SLEEP STATE: The patient cycles through sleep, sleep elements are well developed and symmetric

INTERICTAL DISCHARGES: Occasional awake state sharp waves over central (C3, C4) and temporal (T7, T8) head regions.

Discharges greatly increased in sleep, frequent to abundant discharges, right and left central, temporal, and central-temporal. (C3, C4, T7, T8)

 

IMPRESSION:

Abnormal 24 hours ambulatory EEG

-- mild diffuse background slowing

-- frequent sleep potentiated multifocal sharp waves over parasagittal central and temporal head regions (C3, C4, T7, T8)

 

CLINICAL INTERPRETATION

Background activity in this study is indicative of bi-hemispheric dysfunction of non-specific etiology, it may be seen on the basis of toxic, metabolic or primary neuronal dysfunction.

Epileptiform activity seen in this study is consistent with multifocal cortical irritability, and similar to that seen in patients with epilepsy of multifocal mechanism of onset.

When seizures appear to result from abnormal activity in just one area of your brain, they're called focal seizures. Seizures that appear to involve all areas of the brain are called generalized seizures. Six types of generalized seizures exist. 

• Absence seizures. Absence seizures, previously known as petit mal seizures, typically occur in children. They're characterized by staring into space with or without subtle body movements such as eye blinking or lip smacking and only last between 5-10 seconds. These seizures may occur in clusters, happening as often as 100 times per day, and cause a brief loss of awareness.
• Tonic seizures. Tonic seizures cause stiff muscles and may affect consciousness. These seizures usually affect muscles in your back, arms and legs and may cause you to fall to the ground.
• Atonic seizures. Atonic seizures, also known as drop seizures, cause a loss of muscle control. Since this most often affects the legs, it often causes you to suddenly collapse or fall down.
• Clonic seizures. Clonic seizures are associated with repeated or rhythmic, jerking muscle movements. These seizures usually affect the neck, face and arms.
• Myoclonic seizures. Myoclonic seizures usually appear as sudden brief jerks or twitches and usually affect the upper body, arms and legs.
• Tonic-clonic seizures. Tonic-clonic seizures, previously known as grand mal seizures, are the most dramatic type of epileptic seizure. They can cause an abrupt loss of consciousness and body stiffening, twitching and shaking. They sometimes cause loss of bladder control or biting your tongue.

 

August 9-10, 2022 "24 hour EEG"

Rayden's neurologist ordered a 24 hour ambulatory EEG to hopefully capture any abnormal discharges. She will then review the EEG and the recent MRI with one of their pediatric epileptologists to see if they can pinpoint the origin of the seizures. It may take up to a week for the study to be read and then we will meet again. After seeing the MRI report (See April 26, 2022), I honestly don't know how they are going to pinpoint the origin. There are at least 6 out of 8 abnormalities in his brain that can cause seizures! 

Luckily, Rayden is older this time and understands what's going on. Although he talked to the technician the entire time, he laid perfectly still while he measured his head, marked on his scalp with the pencil, placed all 23 electrodes and dried the glue. The electrodes were then covered by a net cap and attached to a special recorder that is slightly larger than a portable cassette player. He placed this recorder inside a disposable back pack so Rayden could walk around and not worry about it. As soon as we got back to the lobby, Rayden reminded me that he was 'good.' This meant he wanted Starbucks caramel like his nurse spoiled him with last year. It has now become a traditional thing for him. 

We were fortunate enough to spend the night at the Ronald McDonald House instead of the hospital. That made the 24 hours a little more bearable for Rayden. He thought it was more of a sleepover with his two grandmas. He was able to walk around outside, visit the playground, enjoy the playroom, and watch a little TV. He was even allowed to get two prizes from the Rack Room (Bop-it, and Sand Art). This kept him busy until dinner. Then he literally was ready for bed at 8:30! Rayden and I tried to sleep on the cot while Nanny and Granny got the beds. Needless to say, we didn't sleep very well. 

Rayden did not have one of his seizures while wearing the EEG. His doctor had already informed me the likelihood of recording a seizure during a routine EEG is small. The neurologist will be looking for spikes or sharp waves, not just seizure activity. I just hope they can gain some information that will help him. 

Removing the EEG wasn't as easy as placing them. The technician had to use acetone that smelled like nail polish remover. The smell was so strong that it made Rayden cough bad and his eyes started burning. When she finally got all the glue out, she rubbed oil all over his scalp and proceeded to give him a mohawk. He thought that was funny! 

July 26, 2022 "6th Seizure"

Around 6:45 this morning I was awakened to Rayden breathing hard and saying, "Mommy" about twice. I could see on the monitor that he was turning his head back and forth. Not a jerking motion, just a constant movement. I thought he had a bad dream. Michael got up to check on him when he wouldn't answer me on the monitor. He asked Rayden if he was ok. He actually answered with one word, yes, but Michael could see something wasn't right. He said Rayden tried to sit up but couldn't. He was shivering and his eyes were looking back and forth fast. When Michael picked him up Rayden was as limp as a rag doll. He just leaned over his shoulder lifeless. Michael laid him on our bed and I could see his eyes were weird. He was still breathing super hard. I started asking him questions and he wouldn't answer at all. Michael ran to get his emergency medicine. Rayden began making gurgling noises like he was choking on something, and his stomach was...jumping (don't really know how to explain it). His lips were clinched shut super tight and he didn't seem to be breathing. We rolled him to his side and he was unresponsive. His left arm was lifeless and his mouth seemed to be clinched harder shut. He acted like he was going to throw up but he couldn't open his mouth. He looked like he was choking and wasn't breathing. I tried to help him by opening his mouth but it wouldn't budge. His eyes were fixed and dilated. We made note of the time and I went toward his nose to administer the emergency meds. All of a sudden he opened his mouth and gaged, but he didn't throw up. He looked around with a "Where am I?" look on his face. It probably totaled about 4 minutes. After following a few commands like 'look at mommy, look at daddy, are you ok' I let him drift back to sleep while I messaged his neurologist. He didn't wake until 9am. I would not leave his side for fear this would happen again. His seizure watch did not alarm this time because he wasn't violently shaking I guess. So much for that 'at ease' feeling, huh? 

Dr. Lewis, pediatric neurologist, messaged me back late this evening. She has decided to increase his medication from 7.5ml to 8.5ml twice a day. She said the maximum dosage for his weight was 10ml so we do have a little more room before we have to seek a different medication. I'm so thankful for the medication that can keep seizures manageable, but honestly, I just wish there was some way to make them disappear and NEVER come back. We went 19 months, just over a year and a half, without having a seizure. Just when we thought this mess was under control, it came back with a vengeance. Now he's had five in the last 4 months!!

June 23-29, 2022 "Wish Trip to Missouri"

Rayden was awarded a wish trip from the Marty Lyon's Foundation back in 2019. Due to covid and medical issues, we have not been able to take this trip until now. We have been super excited and counting down the days. I cannot thank all the people involved in this trip enough. Every single thing was planned and executed with absolute perfection. It was the most relaxing, enjoyable, and memorable experience!!! There are way too many pictures and experiences to record here so I will just hit the highlights. 

Most children wish to visit Disney World or someplace exotic. Not Rayden. He wanted to go to "Cabelas." I mean, how much does a 5 year old know about the world anyway? Michael and I decided since he enjoys the outdoors, fishing, hunting, go-carts, boats, side-by-sides, and of course, Cabelas; we began searching for a place that would check all the boxes. Big Cedar Lodge in the Missouri Ozark Mountains was just the place. ⛰

Enjoy this video of a few highlights from our vacation. 

Wednesday, June 22

Lynne D'Eramo, from the Marty Lyon's Foundation, came over to hand deliver a bag of gifts, the itinerary, and discuss the details of the trip. It was very nice to finally meet her. 

Thursday, June 23

Rayden was eager to leave when Mr. Dennis, limo driver, arrived at 3:45am! I'm glad our ride was actually a Suburban so there was lots of room for our things. Rayden talked the entire ride to the airport. He was just a little excited, haha. 

Rayden was thrilled to go on his first airplane ride. He continued to say he wasn't scared but when the airplane took off and he was pushed back in his seat by the force, he looked at Daddy and said, "I'm frightened!" It didn't last but a minute, and he was no longer afraid. He even took a little nap on our second flight. He enjoyed both airplane rides to Missouri. Our last plane landed in Springfield, MO around 10:30am. We retrieved our luggage and rental van, and went on our way. After a quick bite to eat and grabbing a few groceries, we arrived at Big Cedar Lodge in Ridgedale, MO around 2:30pm. 

We were greeted by Makenzie who gave us directions to our lake cottage filled with surprises. Little did we know, she had the entire week planned out with times, locations, and vouchers all on the table alongside a basket full of snacks and a plate of designer cookies. There were even drinks, milk and a charcuterie board filled with meat, cheese, crackers, and fruits in the fridge. Rayden had a fishing pole with bate and tackle as well as hats for each of us. The cottage was so cozy and perfectly laid out for us. After settling in, we decided to take a drive around the property to look around. The drive from Springfield to Ridgedale was beautiful but nothing compared to the breathtaking views of the Big Cedar Lodge property. We ended up spending a little time in the arcade at Fun Mountain before we called it a day. 

Rayden soaked in a jacuzzi tub filled with bubbles before cuddling up with 'Hunter Man' and 'Baby Otter' for a good nights rest. 🛁

Friday, June 24

We ate a scrumptious buffet breakfast at the Devil's Pool Restaurant followed by a little stroll across the Devil's Pool bridge and walking trail. We even saw a deer standing within arms reach. Surprisingly, it wasn't afraid of us at all. Our itinerary took us to Fun Mountain today. Rayden received a $250 fun card. We began with a fun game of bowling in the incredible 'under the sea' bowling alley. After a couple of arcade games, we moved on to the go-carts and bumper cars. Lunch at Uncle Bucks Fishbowl was a nice treat to end our time at Fun Mountain. The evening was filled with swimming in an infinity pool by the lake, a short game of putt-putt, and bead necklace design at the 80's Dance Party on the lawn. Needless to say, it didn't take Rayden long to fall asleep! 

Saturday, June 25

Our day began with breakfast at the Log Cabin Cafe (off property) before driving about an hour to the Bass Pro Shop in Springfield, MO. This is what Rayden's wish was originally all about. (Cabela's merged with Bass Pro Shop) This place is over 750,000 square feet and spans 17 acres under one roof! Rayden could not get out of the van fast enough when we arrived around 10:30am. He went straight to 'investigate' every boat, and 'test drive' every four wheeler and side-by-side. We eventually met with the store manager who gave us complimentary tickets to Wonders of Wildlife National Museum and Aquarium. It spans 350,000 square feet with over 1.5 miles of walking trails. We walked so much my feet and legs were throbbing. Luckily we brought Rayden's wheelchair. We thoroughly enjoyed all the meticulously detailed state-of-the-art 4D dioramas. Rayden enjoyed when he could actually REACH them! The aquarium was like none I've ever witnessed. Four floors of exhibits about ocean life, swamps,

rivers, amazon rain forest, penguin cove, bat caves, etc. It also had Michael's favorites; The Fishing Hall of Fame, and the Fishing Hall of Presidents. Around 4pm we ate dinner at Hemingway's inside the Bass Pro Shop. It had a giant aquarium full of fish behind the bar. Michael had bison meatloaf. Can you believe Rayden ate 3 little elk sliders? He loved them!! Our waitress gave us a discount and surprised Rayden with a sparkling little cake with 'Make a Wish' written in raspberry syrup on the plate. We spent a little more time shopping and exploring the free museums (NRA National Sporting Arms Museum, the Bass Pro Shops Motorsports Museum, and Origins of the Bass Pro Shop Museum). We finally left about 7pm and man, WE WERE TIRED!!! 

Sunday, June 26

Our itinerary had us spending the day at Dogwood Canyon Nature Park. It covers 10,000 acres of pristine Ozark Mountain landscape. It has miles of crystal-clear trout streams, cascading waterfalls, unique hand-built bridges and bottomless, blue-green pools. We arrived around 10am thinking we were going to enjoy a guided Tram Tour through the park, but instead we were greeted by a fishing guide named Mr. Teddy. He stated how he wanted to go a step above, and do a private tour with trout fishing and off-roading on our own side-by-side instead. Rayden was all about riding the side-by-side anyway!! He was thrilled to sit in the front and ride around soaking in the breathtaking views. Mr. Teddy gave Rayden a crash course in the grass on casting a fly fishing rod and pointing the pole down toward the fish. He was very excited to try fly fishing for the first time.

Rayden was a natural, catching three rainbow trout back to back on a "woolly bugger" bait while the people on the Tram Tour gazed on and clapped for him. 🎣 Soon he wanted to go riding around the canyon. Mr. Teddy was a fabulous tour guide and stopped to take some gorgeous pictures. We even got to see three Longhorn Steer, a heard of Bison, and countless Elk so close we could have reached out and touched them. As if that wasn't enough, Mr. Teddy took us off-roading. Rayden smiled so big as Mr. Teddy drove fast over the bumpy terrain. His absolute favorite part was going full speed through the river crossings. The cool water splashed through the windshield opening and inside the doors covering Rayden and Mr. Teddy as if they had a shower! Rayden's laughter just echoed through the canyon, and that seemed to fill Mr. Teddy's heart with joy. PRICELESS!! After lunch at Dogwood Canyon Mill and Grill Mr. Teddy took us fishing again. This time the trout just weren't biting because the Tram Tour people had fed them as they went through. We rode around a little more and walked through the two museums, tree house, and gift shop before leaving around 3pm. Rayden yelled multiple times today (and I quote), "THIS WAS THE BEST DAY EVER!!!!" 

Monday, June 27

This was a fun-filled, super packed day as well. We arrived at Top of the Rock around 10am for a 2.5 mile journey in an electric go-cart. We chose a four seater. Rayden and I sat in the front while Michael enjoyed being chauffeured around. I can't put into words how absolutely breathtaking this place is. The trail is filled with stunning rock formations, waterfalls, and views of Table Rock Lake. There are lots of places to park the go-cart, get out, explore, and take photos. There's even a drive through cave with a Bat Bar (refreshment stand) inside. The menu is painted on the cave wall. Rayden and I loved the Bat's Bite, a Strawberry and Peach Lemonade. We RAN through the Ancient Ozarks Natural History Museum because Rayden just didn't enjoy looking at things he couldn't touch! 

After a quick lunch we enjoyed some time at the lazy river. Rayden laughed and laughed watching Mom and Dad getting on/off the floats. He loved going under the waterfall with Daddy. 

We didn't really know what to expect when the itinerary stated 6pm reservations at Buffalo Bar at Top of the Rock. We were greeted by a staff very eager to meet us. Jay, the manager, immediately came over to welcome us and lead us to our table. We walked through the dining area and over to a room. We could hear the soothing music made by a live guitarist, not a radio. He opened the two, giant doors to a private dining room. It had a long, rectangular, glass table surrounded by 8 leather chairs. There were ancient artifacts underneath the glass in the center of the table. There was a beautiful, stone wall and massive chandelier. One entire wall was made of glass panels that overlooked the stone patio with a breathtaking mountain view. I asked Jay if he knew it was just the three of us. 

We didn't need this entire room. Jay informed us that Mr. Johnny Morris, founder and owner of Bass Pro and every single place we have visited, wanted us to enjoy his private dining room and anything we wanted on the menu! Wow! We were not expecting that! As we were finishing up our meal, Jay folded the glass wall panels like an accordion, opening the room up to the outside. The sun was beginning to set and the guitar playing stopped. We walked out onto the stone patio to soak up the breathtaking view and listen to the live bagpipe performance followed by the firing of a Civil War cannon. Rayden was so interested in knowing where that cannon ball went, haha. We returned to Mr. Morris' private dining room to enjoy a luscious apple crisp dessert. The perfect ending to this long, wonderful day. 

Tuesday, June 28

This day began bright and early. We had reservations for a 4-hour Pontoon Boat rental at the Bent Hook Marina . Rayden was thrilled to find the pontoon boat was, indeed, RED! After a crash course on how to use the GPS, we took off to explore the 43,000-acre Table Rock Lake. No, we didn't catch any fish ON the boat but we enjoyed the beautiful scenery, picnic, gorgeous weather, and family time together. Rayden had the best time when Daddy let him DRIVE the boat. He enjoyed a large ice cream sandwich at the Marina before taking another dip in the infinity pool. We had dinner and a massive dessert at the Devil's Pool Restaurant before going fishing on the bank. It's funny how the handful of people out there told us the fish weren't biting but we soon started proving them wrong. I caught a catfish and a sunfish. Rayden caught three brim and Michael caught a bass. 🐠 

Wednesday, June 29

Before leaving Big Cedar Lodge we went through the gift shops and over to Fun Mountain one more time. We sure hated to leave. We arrived at the airport early so we would have enough time to check our luggage, return the rental van, and eat some lunch. Our flight left for Dallas/Ft. Worth around 4pm. We didn't have time to look around in the Texas airport because it took us the entire hour to get from one terminal to the next! This place is huge. We even had to take a train to get to our next plane! We were met by Mr. Dennis, our limo driver, in Raleigh around10pm. He was very excited to hear about our adventures. Rayden filled him in all the way home!! 🏠