On July 21st I opened a whole new can of worms when I took Tyler for his six year check-up.

Tyler is seeing a specialist in developmental care next Wednesday. It was determined at his appointment that he needs to be tested to see if he is on the autism spectrum even though he is not autistic. This doctor will also test him for sensory processing disorder. However, the battle to get this appointment was all up hill. She has two offices and since he is now six, he has to go to the one at the hospital. It seems that one office cannot coordinate with the other or send records back and forth. I was originally sent 20 pages of paperwork from them and they wanted me to sign releases for every doctor that he has ever seen. I called back and explained that they already had that information and that he has seen over 30 doctors in his short lifetime. Then they told me that the first available appointment was in November. Finally, a nurse called me back and told me that she did not realize that Tyler was not a new patient! It took two weeks to resolve this problem.

Next, Tyler needs blood allergy testing. I am waiting to hear from insurance if they will cover that. Then he has about outgrown his double stroller so he needs a safety wheelchair for long distances. I have met a friend through Unique that has a son with a similar deletion to Tyler and he also needs a safety wheelchair. I took the information about wheelchairs that she researched to the doctor. Her staff worked on it for about a week and then they told me that they were mailing me a prescription for it and I would have to deal with the insurance agency. That is also still in process.

Then Tyler is still having issues with his feet. He still will not put weight on his left foot and he is walking on the outside of it. At the time of his appointment he had an appointment with his orthopedic doctor, but a second opinion is needed at this point. So, we now have a referral to go to the Shriner’s Hospital in St. Louis. Since then we saw his orthopedic doctor again this week. We took x-rays and it looked fine. She ordered two new nighttime braces and a new short day brace. We will see soon if all of this works.

Finally, she noticed that Tyler had an ear infection. He had not said that his ear hurt. She put him on amoxicillin for ten days. He finished it on July 30th. On Friday, August 5th Tyler woke up from a nap screaming that his ear hurt. Due to his high pain tolerance, something has to really hurt for him to feel it. It was after hours when I reached the doctor. They called out a stronger antibiotic. He took it for about 4 more days, but it was not working. On Wednesday, Aug. 10th I took Tyler to his Ear, Nose and Throat doctor. He looked in his ears and explained that he had a severe infection that was oozing. He prescribed pain medicine and ear drops to take in conjunction with the antibiotic. Then surgery was scheduled for today, two days later.

We arrived at 7 am at the surgery center. Tyler was taken back for processing as soon as we arrived. He liked putting on the Tiger hospital gown. Then he was taken to the playroom. The nurse asked if she could take him for a moment and she brought him back with a Stitch sticker and a blow up basketball. Tyler was in heaven with his new ball.

We then played in there for about 30 minutes before the anesthesiologist came in to talk to us. She asked if I had any questions. I explained that on his last ear surgeries he woke up angry, screaming and hard to control and that when he had surgeries at the local hospital, that did not happen. She ordered some Versed for him. At first I tried to hold him after he took it, but he would have none of that. Then the nurse came back in about ten minutes later and asked me to try to hold him again. He was mostly out of it. She then selected a bed for him. I carried him to the bed down the hall and one of the nurses came to talk to him. He let Tyler pick the scent of his mask for the anesthesia. Then Tyler crashed. The ENT doctor came and talked to me. He looked Tyler over and decided that his ear still looked bad. I also explained that the ear drops were pooling in the one ear and not going in. He said even if a little of it went in, it would help. He ordered Rocephin, which is an antibiotic IV to help with some of the infection since it appeared to be severe. Then he left and the anesthesiologist came back to tell me that they would need to add an IV for his medicine. Then the nurse took Tyler off to surgery.

I went and sat back in the waiting room for the twenty minute surgery to be over. Finally, after twenty-five minutes the doctor came out to talk to me. I was taken back to a small conference room. He explained that Tyler tolerated the surgery well. He explained that they were able to put the tube in the one less infected ear. He told me that the other ear was suctioned and cleaned out as best they could. He explained that due to the large infection that it might possibly be in the bone. He wanted to see Tyler back in a few days and he gave me prescription refills for his medicines. Then plan right now is to do another surgery in 3-4 weeks to put the other tube back in, but only if he does not have a bone infection.

I was sent back to the waiting room to process all of this new information. I was called back a few minutes later by a nurse to sit with Tyler. He was out cold! I tried to wake him up, but he would not wake up. About ten minutes later the nurse lifted him out of bed and handed him to me to hold in a chair. He was still groggy.

We tried to get him to drink some juice. The nurse kept coming and checking on him. Then as soon as she left he looked pale and ill. I called her back and she gave me a green bag with a hard plastic rim for him to get sick. He did and it lasted about 3-4 minutes. I felt so bad. There was nothing I could do to make him better. The nurse brought some cold wash cloths for him and said that he would feel better now. He did perk up a little. He let the nurse take his IV out and the yellow wrap with the bees on it was transferred to his Baa-Baas arm. Baa-Baa and Stitch went with him to surgery and were again were waiting in recovery.

He is now home and sleeping comfortably on the couch. I did not want to put him in an upstairs bedroom in case he would wake up and try to come down the stairs. Right now we are praying that the antibiotics work and that the infection is not in his bones.

Last Thursday I ventured to Silver Dollar City with my parents and my three kids. I searched their website and called ahead to see what accommodations they have for special needs kids. I did not receive much information. We headed off and were pleasantly surprised that the handicapped parking was right next to the entrance and did not require boarding a tram as the free parking guests needed to take one.

We were in the entrance without any problems. We picked up a handicapped map and headed to the kids area of the park. It was already in the 90’s at 9:30 am. On the way to the kids’ area my oldest saw Max and Blu. Tyler and Hayley did not recognize them. We went to take a photo with them and were asked to wait a minute. The flag ceremony was starting. Once the pledge of allegiance was said and the Star Spangled Banner was played Max and Blu walked to a new location to greet guests. We had to wait in line again, but it was a short line.

 

Then we entered the kids’ area and had to wait in a line for a kids height check. The height check allowed kids to receive a color coded wrist band that let ride operators know which rides the kids were tall enough to ride. The band also contained a parent’s cell phone number in case the child became separated from his or her parents.

Finally, it was time to ride some rides. Tyler started screaming and did not want to ride the kiddies’ coaster, but Hayley went on it with me. Tyler rode the tea cups with Grandma, Papa and Bre. Then we tried the pirate ship. The problem here is that kids under a certain height can only fit in the first two rows. Tyler and I did not make it on the ride, but Hayley and my parents did. He was completely melted by the time it was his turn. He screamed the entire ride. The day was not off to a good start. Next we found the elephant ride and since it is pretty much the Dumbo ride at Disney, Tyler was again happy.

At Disney Tyler receives a GAC or Guest Assistance Card that allows him to stay in his stroller until he boards a ride. This feature serves two purposes, it keeps Tyler safe and he does not have to wait in long lines where he overheats and then melts down. We found where we had parked the stroller and loaded everyone back in to go over to the even smaller section. Tyler finally found the area of the park that he liked!

Now everyone was hot so I went to get ice water for everyone. Disney offers free ice water to guests at any counter service restaurant location so I assumed that Silver Dollar City would do the same and they did. My dad could not believe that they would hand out free water, but I explained that they did not want guests passing out in the park.

Then we went to the stunt dog show. I read that I could keep Tyler in his stroller since he was special needs and go into the stroller. I entered the handicapped lane and was told I needed to park my stroller. At this point at Disney the cast member would see the red stroller as a wheelchair tag and allow me to enter the theater.  I explained that Tyler was special needs and instantly the tone changed and Tyler and the stroller were welcomed into the theater. They asked if some of our party could sit in the regular seats so my mom, dad and Hayley went and sat further up. Bre stayed with me. She was overheated and hungry. Tyler was again having another meltdown. I think it was due to the whole area being unfamiliar. I took out a blanket for him. I gave him and his sister some peanut butter crackers and we made it to the start of the show. At the beginning of the show they started by stating all of the dog toys that they had for sale after the show and I kept thinking that this would not happen at Disney.

We left the show and headed up a large hill. Whereas Disney is mostly flat, Silver Dollar City is not and pushing 80 pounds of kids uphill in the heat is not easy. We found an exit to the Flooded Mine ride. My brochure said that handicapped guests can go through the exit. I had done this plenty at Disney, but I was not sure how it worked here. I asked a guy at a food booth and he just said to park the stroller by the side of his booth. There was no stroller parking anywhere. We went in the exit. Then there was another gate. I did not know to go through it. The problem is that everyone coming out is coming at you. Finally, I was able to get the attention of the ride operation, who was sitting in a raised booth similar to the one at the start of It’s a Small World at Disney. I told him how many were in our party and he let us on the next boat. The tricky part was carrying Tyler down the stairs and getting him into the boat. It was a boat ride like Pirates of the Caribbean. You were given a heavy metal gun to shot at red and white circle targets. Tyler really liked this ride. There were a bunch of convict mannequins throughout the ride.

We exited right back out to our stroller. The stairs and hills in this park were very difficult to manage in the heat. Next, we went to the train. The train whistle set Tyler off on another meltdown.  We had to again park the stroller and walk over to the station. Each time the train whistle blew, Tyler screamed. I was wearing down rapidly. The train stopped for a short train robbery show. Tyler liked giving high fives to the bad guys.

After the train ride I decided that it was time for lunch. However, we stopped to take a spin on the carousel first.  Hayley liked riding on the bear. The rules for this ride were also confusing. The first time we rode I was told I had to ride with Hayley so we shared a bear. Then the attendants switched and I was told I needed to stand by her bear. Tyler really liked the carousel.

After the detour we went to the Mine restaurant. It met everyone’s dietary restrictions. The brochure said that there was a 60 foot tunnel to the entrance. We entered and waited and waited. Finally, we turned a corner where the line continued. There was no one greeting guests or welcoming them. Guests picked up a tray and went through a one sided line with about 12 trays of foods and salads and a top row of desserts. Once you went through the line, you waited to be seated. Then if you wanted additional food, you went down the other side of the line that was blocked off at the entrance.  The restaurant was tiny inside and only three servers were working. Food was not replenished quickly. However, the food was good. Tyler liked the Mac and cheese and the Chicken Tenders. The adults enjoyed the pulled pork and beans and ham. The desserts were also tasty and included chocolate cake, carrot cake and a berry cobbler. The restaurant was underground, but it was not air conditioned. We were seated by a fan that helped circulate the air.

If you are interested the Silver Dollar City Mine Restaurant’s prices are $12.49 for adults, $7.49 for only the salad bar, $5.49 for kids ages 4-11 and 3 and under are free. I searched for this information prior to our trip and could not find it anywhere.

After lunch it was close to 2 PM and the heat was wearing on everyone. Breanna and I rode the river raft ride that is similar to Kali River Rapids. It appeared as if there was no line, but the line wrapped around and around in the queue. We ended up waiting about 15 minutes since they needed a party of two to fill a boat. After the river raft ride, we met back up with my parents and the two little ones. Tyler had discovered a giant play area with balls. He loved shooting the balls across the play area. Hayley liked it to.

At this point we were all about done. We rode the Flooded Mine ride one more time. The same attendant was present. He seemed annoyed to let us ride it again, but it was at least two hours later than the first time.

On the way out of the park, we saw a group of female singers and some clog dancers, but due to the heat we left. It was only 4 PM, but there was nowhere to escape the heat so we left without seeing the entire park.

Silver Dollar City did provide some assistance for handicapped guests, but Disney goes above and beyond in making sure that handicapped guests face no obstacles.

On Monday evening our family attended the Wichita Wingnuts game as part of the disability awareness night. Tyler played baseball this season in the Miracle League Baseball League. He was a member of the Marlins team. This league allows any child between the ages of 5-18 with any disability to play baseball. Each child has an angel on the field with them to help them bat, field and run the bases. In some cases, the player wheels around the bases. Children with visual disabilities can hit beeper balls that they can hear coming. Bats come in all sizes as do the balls themselves. An announcer is at each game to announce each batter and to give a play by play of the game. For many of the children it is their only chance to play baseball and to watch their faces light up as they play is simply amazing.

On this evening Tyler and the other Miracle League players were invited to the game to come and meet the players and to go out on the field prior to the game.

Once the Wingnuts coordinator thought that most of the kids were present, we were led around to the back of the field where the locker rooms let out to allow the players access to the field. Each child was handed a team photo. We were told that the players would come out and go down the line of lined up children and sign autographs for them. Tyler was at the start of the line. He was so excited. His face lit up each time he heard a new player’s cleats walking on the pavement from the locker room to him.

Tyler cannot control his excitement over another player coming out of the locker room to sign autographs!

Tyler was so exited to see another player come out of the locker room. His excitement was so contagious to everyone around him.

This photo becomes even more significant later in the game!

Tyler kept looking into all of the player’s helmets to check out the food that they were carrying in them. He was obsessed with the bananas. So, this player agreed to take pictures with Tyler and the bananas.

Now during the entire Miracle League season Tyler and his teammate, Chris, both only wanted to play pitcher. During many of the games they both stood on the pitcher’s mound and shared the mound. Each time that a new player came out this evening, Tyler would ask them if they were a pitcher until the catcher came out with his shin protectors on. Tyler wanted to see what they felt like. Then he became fascinated with the gear that catchers use.

Next it was time to walk from the outfield to the third base side of the field for more autographs, the national anthem and the first pitch.

Next Tyler saw #14 and wanted his picture with him. I did not know at the time, but he was the pitching coach, which seemed all of the more appropriate later!

Next one of our Marlins’ players, who was with his friends from Heart Spring had the privilege of throwing out the first pitch! Dawn, the Marlins other coach and I coached Josh all season. Dawn turned to me after his pitch made it to the plate and gave me a high five. She told me, “We coached him!” Before the pitch he told me he was a little nervous, but he had an amazing throw!

We were led back off the field from the direction that we came. Then we found our seats on the third base side of the field. We started in one location and by the middle of the first inning had moved even further down the third base side. Tyler wanted to watch the pitchers sitting by the bullpen. He stood by the railing overlooking their sitting area for the entire game.

Now here is where the main story begins. Tyler kept waving to the pitchers and catchers. One catcher in particular always waved back to Tyler. A few times he was called over to the dug out. While walking past Tyler in each direction, he would give Tyler high fives. Then in about the third or fourth inning Tyler made a new best friend with # 22. The two of them played back and forth across the huge gap between them. He would wave to Tyler and point to him and Tyler would mimic the responses. At one point they were hiding behind the things around them and popping back up. The catcher was behind other players and Tyler would duck behind the cement barrier. At one point in the game more people in our section were laughing and being entertained by Tyler and the catcher than they were the real game. It was too cute to watch. For someone with no connection to my son and no knowledge of his story or how much that interaction meant to my son, it made his evening.

Later # 22 and the pitcher that he caught for were called to the bullpen. Tyler and I walked over two more sections and down to the front row so he could watch them warm up. He still wanted to wave to him, but I explained that they were working now. I showed him how hard the pitcher threw the ball and the extra padding on the catcher’s glove. He sat quietly and watched without interrupting. The pitching coach #14 walked over the fence where we were sitting and handed Tyler a baseball. His face lit up. He wanted to run back and show his sisters and dad, but he waited until they were called into the game. Then we walked back to our seats.

After the game some of the players were signing autographs. Tyler saw his new buddy and started running to him. Right as he was about to walk away he saw Tyler. He gave him a high five and chatted with him. Then we found a way to heist Tyler over to his new friend for one more photo.

Our family cannot say enough to thank Mr. Powell for the way he treated our son. Tyler felt as if he had a new best friend by the time the game was over. He could have easily ignored my son, but he chose to play with him and pay attention to him. Words cannot thank him enough for the lasting memory he created for Tyler. The Wingnuts not only have a fabulous new catcher in their lineup, but also a player with a heart of gold. Thank you!

Yesterday as we were driving in the car to take Hayley to ballet class, Tyler announced that he needs to go and see Stitch. I asked him how he planned to get there. He replied, “On an airplane, MOM!” Next I asked what he would like to do with Stitch and he told me that he wants to eat with him. I promise to continue Tyler’s medical story soon, but today I thought I would share with you a special meal that our family shared on my son’s Dream Trip from the Dream Factory (similar to Make a Wish, but they also grant dreams for kids with chronic illnesses). We had breakfast with Stitch at ‘Ohanas. We showed up late for the meal due to delays in the Disney bus transportation system. We had allowed plenty of time to get there, but it did not work out. The cast members on duty agreed to fit us in. The waiting area was the waiting area for two restaurants so it was very full, but once inside the restaurant it was not full.

Before our meal, we had our family photo taken. Since we knew that we were receiving a photopass CD I took note of the time. The cast members at ‘Ohana will try to sell you your pre-meal photo during your meal. They will tell you that you cannot add

Tyler in the Polynesian Gift Shop

it to your photopass CD. However, there is a way to do this for several restaurants including this one and Chef Mickey’s. You just go to the photopass booth inside one of the theme parks or at downtown Disney and tell them the time that the photo was taken and what you were wearing and they pull up the photos from that time frame. Once you spot your family, the photo session is added to your photopass! The photopass photos are some of the only photos I am in since I am the family photographer. While we waited on our table, we were provided with a pager. We chose to wander over to the gift shop to look around. Tyler found some items he wanted, but we made him put them back!

When it was our turn to be seated we were welcomed warmly with a Hawaiian greeting and presented with floral leis. Our host explained how the family style meal would be served. She presented us with two types of Hawaiian bread, one of which was pineapple bread. She also asked if we would like to try Hawaiian juice. She explained the flavors of juice in it, which I have now forgotten, but it was amazing. They also had orange juice, milk and soy milk as options for drinks. Due to Tyler’s milk intolerance the whole family drinks soy milk and it was great to have it served everywhere throughout Disney! Our cast member explained that our need platter would be a fruit platter followed by our main dish, which consisted of scrambled eggs, bacon, pork, potatoes, Mickey Waffles and biscuits. Since it was served family style we could ask for more of any of the items and they were brought right to the table. We did not have to miss any characters!

First Pluto stopped by to visit.The first picture shows Tyler holding the giant red grape. Before I could cut it in half, it was in Tyler’s mouth. Tyler had just finished a huge red grape in his mouth when Pluto walked up. All of the photos show a huge grape bulging out of his cheek.

We had autograph pages ready for the characters to sign, which helped distract the kids when the character arrived at the table.

Then Mickey stopped by in his Hawaiian shirt. At first Tyler did not know what to think and then he decided that he liked Mickey and wanted to take a closer look. Hayley was still a bit apprehensive of Mickey, but she did not dive away from him like she did with Pluto.

 

Finally, Stitch showed up and Tyler was shaking with excitement.

Tyler’s arms and hands were shaking. He was grinning from ear to ear. He jumped out of his chair to run to Stitch. Any fear of the characters was now erased. I am so glad that Pluto and Mickey came to visit first. Tyler often need to warm up to new experiences.

 

Next Lilo and Stitch invited everyone to join in a parade. Breanna took the two little ones, but she did not see the music shakers. By the second go around  someone had given them shakers to shake.

Lilo finally made it to our table!

Then Aaron took Tyler to the restroom to change his diaper again! While he was gone a manager came over to my table to talk to me about Tyler. Our reservation has stated that he was celebrating a personal achievement. When the cast member at the front asked out it, I told her his was on his Wish Trip. He asked if we had seen Stitch and I replied that we had. He explained that Stitch was coming back to spend some more time with Tyler. He also asked if we had any souvenirs yet and I told him that we were just starting our second full day. He said that he would be right back.

Tyler returned and so did Stitch!
 

The manager returned with a small bag and told Tyler that he had a present for him from Stitch. Here is the result! The first one is Stitch coming out of the bag and the second is Stitch getting lots of hugs.

 

Then both Pluto and Mickey came back by to say, “Hi”.

While I took care of the check, Tyler played with his new Stitch.

 

This restaurant was amazing from the treatment that our family received to the delicious food. It has been almost two years since Tyler’s Dream and he still sleeps with his little Stitch right next to his pillow. On the last day of the trip we also purchased the giant Stitch for him and he sits at the foot of Tyler’s bed.

Tyler with Stitch at All Star Sports Resort

Last Tuesday a friend and I met for lunch and then decided to take our kids to a local play, “Chicken Little”. Tyler has been to the movies and to several plays. We walked into the theater and played musical chairs until everyone was settled. It was about 15 minutes until the show started. Then out of the blue Tyler started to scream and throw a huge tantrum with kicking legs and feet. I am not sure what set him off. Grandma and Papa took him to a local show with lunch a few months ago and the show was too loud for Tyler. He often goes into fits with loud noises. I assumed that the previous play was being replayed in his head. The theater was quiet and the red curtain was pulled shut. I tried everything to calm him down. I pulled out two pairs of shorts from the diaper bag. I keep an extra pair for him and his little sister just in case. He used those as ear muffs, but he continued to scream. A few minutes later a group of special needs adults came and sat at the end of our row and the two rows in front of us. They intrigued Tyler and he grinned a little, but continued to kick and scream. Finally, the show was about to start, he was still throwing a fit and I could not hear any of the introduction. I was doing everything I could to calm him down. I was sure that when the introduction was over, I would be asked to take him out of the theater. Then the most amazing thing happened, three actors (wolves) came to the stage and started to sing. His crying stopped. His ears were still covered. Then he started to laugh. The actors would ask questions of the audience and he would yell out responses. About half way through the play he climbed down off my lap and went and sat between his sister and my friend. He kept the “ear muffs” on his ears, but he enjoyed the show. After the show he met the characters from the play and took pictures with them. You would never know the trauma that ensued prior to the start of the play.

This whole incident reminded me of a similar incident at Disney’s Animal Kingdom. Tyler was 4 years old and three months. My husband and his big sister wanted to ride Expedition Everest. Tyler saw it from a distance and started screaming, “No!”  He was buckled into his stroller next to his little sister, who was asleep. I tried to explain that he was not going to ride it. So, while dad and sister rode the rollercoaster, I took an overheated and screaming Tyler into the gift shop. I tried walking around with him and showing him the neat items in the store, but it was not helping. His little sister stayed asleep through the entire incident. Two fabulous cast members came to my rescue. They did not have any current customers and stopped to talk to Tyler. They asked him if he liked to play ball and he said that he did. Tyler could play ball all day long if I would let him. They took out a large Yeti ball. It was a white fluffy stuffed ball with embroidered eyes and small blue arms and feet. They began to play catch with Tyler. He stopped crying. They would take turns assisting customers when necessary. The two cast members asked some questions about his condition. Tyler dropped the ball on the floor a few times and I kept apologizing that I was sorry that it was getting dirty. They explained to me that it was a sample ball that they kept for playing catch and it was not for sale. He must have played ball for about 20 minutes with these two cast members. Finally, my husband and daughter returned. One cast member turned to the other and asked, “Should we?” and the other one said, “Yes”. The next thing I knew, they cut the tag off of the Yeti ball and handed it to Tyler. I tried to protest, but they explained that it was now his ball, so he could play Yeti ball at home. I am often asked why I love Disney so much. Words cannot explain my love of Disney, but a smiles on my children’s’ faces can. Disney cast members are always going above and beyond to make magic happen. I cannot thank these two cast members enough. Two years later, Tyler still likes to play Yeti ball with his Yeti.

        

Here is the story of Tyler’s arrival on June 23, 2005. It seems so long ago now as he is graduating from kindergarten this afternoon.

Our hospital stay was a little chaotic to say the least. I was induced at 5:30 am on the 23rd, but the pitocin to start labor was not given to me until about 6:55 am and then Tyler was born at 10:53 am.

Tyler Daniel – 6 lbs. 4.4 oz., 18 1/2″ long born on 6/23/05 at 10:43 am

The labor went pretty smoothly. Tyler did not tolerate pushing well and after the first set of three pushes I was put on oxygen and Tyler was helped out with the suction vacuum and one last push. The bruise on his head lasted only a few days. Then he was checked over by a swarm of doctors. I was able to hold him for 2 minutes before he was whisked off to NICU. There he was x-rayed, scanned, poked and prodded until 7 pm. I was able to visit him once. Then he was moved from the second floor NICU to the third floor Special Care Unit. I had a room on the third floor closer to him. That first night the nurses would call me every two hours to tell me that he was crying and hungry and that I needed to come feed him. So I would trek down the hall to the Special Care Unit, scrub in and feed him. Finally, the next day I was moved to a new wing on the third floor called the mother and baby unit that was closer to the Special Care Unit and Tyler was moved to my room. Tyler was born with unique and rare chromosome disorder, which was labeled as a partial deletion of the 16th chromosome on the p arm from 11.2-13.1. At this point the doctors knew of no other living person with this condition. Tyler was born with severe club feet, which would need to be corrected with casts and surgery. He had two holes and one open valve in his heart. He has a recessed chin, which cased feeding problems. His kidneys appeared to be functioning well. I just remember leaving the hospital with a stack of business cards and each one had a follow-up appointment for Tyler on them. I was in a world of shock and happiness all at once.

My OB came to check in on us both. She said something amazing as she sat in the chair across from me. She said, “I am amazed by your faith. It never waivered through this entire process and now you have a beautiful baby boy to show for it.” I know that this whole experience had to change the way she practices medicine. I know that she can never look at another mom and suggest terminating a pregnancy without first thinking back to my little miracle, Tyler. The first night he was in my room we were up until 5 am as he was hungry and my milk had not come in yet. He still had his IV in and was receiving fluid through it. However, this was his third IV.

He kept pulling them out. At one point he had one in the side of his head above his hears and it was horrific to look at. He didn’t care for it much either as he reached up pulled it out. My milk came in late Saturday night and he started sleeping for 3 hours at a time and we actually had to wake him to eat. He is so happy now. Then on Sunday (He was born on a Thursday.) they ran the new 1 1/2 hour car seat test and his jaundice test. He passed both well enough to come home.

When Tyler came home Breanna wanted to hold him all of the time. She slept through his crying as they shared a room.

Tyler and I decided that we missed the hospital so we both decided to take trips back to visit. I was readmitted Tuesday evening with excruciating pain below my stomach. I contracted an infection of my uterus when he was born, but it did not get bad enough to notice until Tuesday. The doctor sent me to the emergency room and I was admitted shortly after. They conducted blood work and an ultrasound. My white cell count was double what it should have been so they wanted to keep me overnight for observation. Then the hospital has a policy that until your temperature is gone for 24 hours you could not go home and mine was 101.4. I was finally released late on Thursday afternoon.

During the same time on Wednesday night while Tyler and Aaron were staying with me in my room Tyler got sick. He threw up twice and threw up blood. I called the doctor the first time and she told me not to worry. The second time she called the hospital and Aaron had to take him to the pediatric unit as I could not leave my hospital room. On top of this his billirubin count was at 20 while anything over 13 is considered too high. He was already on a small billi blanket, but the doctors decided that they needed to get the level down faster. So he was admitted to the pediatric unit in building 4, while I had to stay in building 3. They put three billi lights on him and took his blood every 8 hours until the levels came down to a safe level.

Finally at midnight on Friday morning they started to come down and by 8 am they were within a safe level so they turned off the lights, but the level had to stay down for 8 hours with the lights off for him to be able to come home. Finally, at 5 pm on Friday he was released from the hospital. During this time friends and family took Bre to bible school, fed her meals and kept her overnight for us. Tyler returned home alert and waking up to eat every 3-4 hours.

Next Up: Tyler’s story continues with many medical doctors 

After being sent home with not so great news, I was determined that Tyler would be alright. I was encouraged by my OB/GYN more than once to terminate the pregnancy. I stood firm and explained that it was not an option. I wondered if Tyler was the only one with his condition because other parents heard about all of the problems that their child would have and chose not to keep their babies. He was too precious to me and the only option to me was to keep my son. I had seen his beautiful face on the ultrasound and could not wait to hold him. I could feel his strong kicks and I knew in my heart that he was alright. The pregnancy was a whirlwind of doctors. He had weekly visits with the perinatologist as well as weekly visits with my regular OB. Then we added on bi-weekly ultrasounds with a pediatric cardiologist. Those visits would take over an hour and I would just hold my breathe as she went over every tiny detail of his heart.

Here is a letter I wrote to a friend on April 12, 2005. Tyler was due on June 27, 2005.

I will start with Breanna. She is now four and a half. She will be five in August and will start Kindergarten in the Fall. I am not sure where the time flew by. She is beautiful and very intelligent for her age, which can add some challenges. Sometimes she can think faster on her feet than Aaron and I can. She also has figured out how to negotiate and manipulate to try to get her way. She is doing great in preschool and can write her first and last name along with her phone number. She learned all of her upper case letters last year and this year they are working on lower case letters. She is also learning how to read and does great at sounding out words. She takes ballet and tap class once a week and loves to dance. Her class is through the local park system so they have classes for 10 weeks and then have a recital at the end of the 10 weeks. The park system loans them costumes to wear that change with each recital. It is so fun to watch how much she has learned and to watch her develop. She is so proud of her ballet and tap skills. In the Fall I put her in swimming lessons for the first time and she passed level 3 on the first try. She skipped the first 2 levels. She is a natural fish. This past summer she watched a friend’s older sister swim across the pool under water and the next thing I knew she was swimming across the pool under water with no lessons under her belt. I was amazed! Me pediatrician says that she is very advanced and that she will keep me on my toes, which she does. I love watching her grow and develop.

Now for the reason that I keep putting off writing, Breanna and I were stopped at a stop sign in October at the bottom of a hill in a Honda Civic. While we were waiting for our turn to go a woman in a SUV came over the hill behind us in a 45 mph zone and decided not to stop. She plowed me and Bre through the intersection. Luckily, we just had a few bumps and bruises, but they took us by ambulance to the emergency room just to be sure. The car was totaled and buckled past the point where Bre’s car seat was in the back seat. When we were at the hospital they did lots of x-rays on Breanna and myself as well as CAT scans. They asked if I might be pregnant and I said it was a possibility, but slim since I had a diagnosis the year before that I would be unable to get pregnant on my own again without several different drugs. So the technician did the x-rays anyway. The next day I found out I was pregnant, but I was spotting really badly so I thought that I was not going to be able to keep the baby. The doctor had explained that I could get pregnant every month, but that my body rejected the baby and would not allow me to keep it.

So, I had to wait two more weeks before I saw my OB doctor. At that point she did a vaginal ultrasound and the baby looked as if it was doing ok. She felt that the x-rays would not have hurt the baby and the cat scan technician did cover me before doing the cat scan of my neck. . I went on going to routine checkups and taking my vitamins. Then at 22 weeks an ultrasound revealed that my baby was a boy and he had club feet. I had no idea what this meant. I was referred to a perinatologist for an amniocentesis since there was no history of club feet anywhere in our family. She had explained that he might have problems with his 13^th or 18^th chromosomes, which when I researched them on the internet it was not positive what I learned.

We met with the perinatologist and she explained the two ways that club feet are formed and that most likely nothing else was wrong. Then it would take three weeks for the lab results to come back. They took one week. His 13^th and 18^th chromosomes were in tact. Tyler (we named him as soon as we found out there might be a problem) was missing two parts of his 16^th chromosome. There were no doctors in Wichita that could tell us what that meant and internet searches were not very helpful.

The day after I found out this news I had to go to Chicago for 3 days for a financial conference for my sorority. No one could believe I was going, but I needed to get my mind off of the baby for a few days and there was nothing I could do at home, but try to explain to people what I knew, which made me more upset. I learned a lot at the conference and one of the collegians, Kaelee that went with a group of three of us has a brother that lives in downtown Chicago that gave us a tour of the city on Sunday when the conference let out early and our plane did not leave until 5 p.m.

When I returned the doctors made us an appointment with a geneticist in Kansas City to get more information as well as setting up an echocardiogram for him with a cardiologist. The echocardiogram looked good, but the cardiologist warned us that there are three heart defects that can not be detected until he is born. Then we were supposed to wait 2 months until we could get an appointment with the geneticist. My doctor called up to KC for 5 days until she go the appointment moved up to one week later.

Breanna’s Grandma watched Bre for the day and Aaron and I made the 3 hour drive to Kansas City. We met with the geneticist that afternoon. Tyler is missing two parts of the 16^th chromosome in the regions of 16p11.2 and 16p13.1. There is only one other case on file that they could find with a baby with similar deletions. That baby was detected to have a heart problem at a 20 week ultrasound. The baby boy died at 5 months. He has cysts on his kidneys as wells as skeletal and facial deformities. We left there more confused then when we arrived. All they could tell us was that our son was going to have a lot of problems and might be mentally handicapped. They also informed us that when he was born they would have to do a blood DNA test, an echocardiogram, an ultrasound of his kidneys and his brain as well as being checked all over. They also said it would be better if we could have him in KC where all of the specialist are at the Children’s Mercy hospital, but that is not an option. We were both devastated. I think Aaron put it best of the way home. He was still questioning why. He said that he prosecutes women on drugs and alcohol on a daily basis that have perfectly healthy babies whereas we did nothing wrong and this happens. He said that God must have known that we could handle and provide a good home for Tyler when someone else could not.

I am now at 29 weeks. Tyler Daniel is due on June 27^th. We went in last Thursday for an ultrasound and got the most positive news that we have received yet! They could see his cerebellum and it was developing well, which rules out about 95% of skeletal problems. His arms and legs were continuing to grow at the appropriate rate. His heart was still beating strong and showed no signs of defects. His stomach had fluid in it that showed he was processing his food and there were no visible cysts on his kidneys. He still had his club feet, but he was wiggling and moving all over. He weighs about 2 lbs and 4 oz. He is in the 40% for growth. They could see a profile of his face and his forehead and chin had the appropriate curvatures, which was a good sign since babies with disabilities often have a slant to these features. They said that the face was the last area to get fat to it so in a month they would be able to measure his facial features to determine more thoroughly how his is developing, but for right now he is too skinny. I realize that he is not out of the woods and lots of things can not be determined until he is born, but it is a much better outlook. All of our friends and family have been praying for him. My mother-in-law, Breanna and I did a nine day Divine Mercy Novena starting on Good Friday and I think it is helping. He is doing so much better!

During all of this over the past 7 months, I am still keeping up with all of my volunteer activities. I am the president of our home owner’s association. I served as the Chapter Operations Advisor for Delta Gamma, the sorority I was in in college, which means I assist with all of the monthly and yearly budget issues. I serve as the Box Tops coordinator for Breanna’s school.  I attend a local MOPS (Mothers of Preschoolers ages 0-5) group twice a month and coordinate the crafts for 55 kids ages 2-5 for these meetings. Then of course I have all of Breanna’s activities. I do also find time to do water aerobics and swim at least 3 miles a week as well as lifting weights on the machines at the YMCA three times a week. I try to stay in shape as much as possible.

Next up: Tyler arrives!

Tyler Daniel – 6/23/2005

Tyler’s story began about 7 years ago. My husband and I had been trying for a second child. We were told that it was not meant to be without lots of medications and tests. We opted out of that option. I had given up home of a second child after about four years. I had stopped praying for a second child. Then I sat at church one Sunday and we had a guest priest. He had a sermon about prayer and how God always hears our prayers and how we should never stop praying. It was as if we was speaking to me. I went home and continued to pray. On October 29, 2004 my 4 year old daughter and I were rear ended at a stop sign. We were ok, but it was that day that I discovered I was pregnant! The accident did not do anything to hurt the baby.

I had some spotting during the first six weeks. The doctors office was not caring nor were they concerned. They told me that they did not see patients until six weeks into the pregnancy. So we made it to six weeks! Everything was going fine. At twenty weeks I went in for an ultrasound. My husband and daughter did not go with me as they were both sick. The ultrasound took over an hour. It was a boy! Then I sat in the doctor’s office for another 45 minutes waiting on the doctor. I put on my coat to leave as I was tired and frustrated that it was taking so long. The doctor came in and told me to have a seat. She explained that there was something wrong with the baby. He had club feet. I had no idea what this meant. I asked if it was fixable and she said, “Yes”. Then she explained that I needed an amniocentisis to rule out trisomy 13 or 18 as to her knowledge no baby has ever survived more than a few days with either diagnosis. My husband and I debated back and forth as to do the test or not knowing that it could also cause a miscarriage. We went ahead with the test. When they inserted the needle in my belly, Tyler batted at it with both hands. It was at this point that I knew he would be ok. The results came back two weeks later. Tyler was diagnosed with a partial deletion of his 16th chromosome on the p arm from 11.2-13.1. All of this did not make any sense to me. I tried searching the internet and nothing pulled up. We were sent on a six hour round trip to see a geneticist at the closest Children’s Hospital. The geneticist took our health history and explained that Tyler’s deletion was a new deletion as both my husband and I had normal chromosomes. He told us that there was very little information about what to expect with Tyler. He gave us a case study on another child with a smaller deletion than Tyler’s deletion, but it was on the same chromosome in the same area. That child had problems with his heart, his brain and his kidneys. He died at five months due to heart complications. Then we were sent home. We really did not know much more than we started with. However, I knew that he had to be ok. My husband made a profound statement on the way home. His job at the time was a prosecutor of DUIs. He said that he did not understand how so many moms on drugs and alcohol could come into court with normal babies with no problems, but yet ours was missing so many necessary pieces. Then he said, “God must know that we can handle and care for him whereas one of those moms would not be able to.” It was so very true.

Welcome!

My name is Kristin and I am a wife and a mom of three wonderful children. My oldest, Breanna, is 10. Tyler is 5. Hayley is 3. This blog is about my love of Disney along with a mix of my family and our trials and triumphs. I will tell you more about Tyler later. I am a stay at home mom, who has recently accepted a job as a Disney Travel Specialist! I have been to Disney World and Disneyland at least once a year for the past 15 years with the exception of the year that Tyler arrived. I am a Girl Scout leader to a wonderful group of girls that are entering 6th grade next year. I coach all three of my children in t-ball, soccer and basketball when coaches are needed. Currently, I am an assistant coach for Tyler’s Miracle League baseball team. Hayley is taking tap and ballet and getting ready for her first recital. Breanna is finishing fifth grade and getting ready for middle school next year. I keep by serving on many committees with church and my kids’ three schools.