Tyler's Wish Trip - Nov. 20-25, 2009 / Dream Factory

[kdzbear]

Welcome to my pre-trip report. I will tell you about who is attending our trip. It will be myself, my husband, my daughter, Breanna, my son, Tyler and my daughter, Hayley. Breanna is 8 and turns 9 in August. She loves to dance ballet, play soccer and participate in Brownies. She currently loves Hannah Montana and High School Musical. Tyler is my adventurous child and my Wish child. he will turn 4 at the end of June. He is full of energy and loves sports, especially basketball. He also loves to swing on our swing set. Then our youngest, Hayley turned one in January. She is the happiest baby and full of life. She loves to copy Tyler and do anything that he does. She loves TinkerBell and can say. “Tink”.

Our whole family loves Disney. We have gone to Disney World about every other year. We save up little bits here and there until we can afford to go. Three years ago we discovered free dining and love that time of year. We enjoy the lower crowds at the park and we love trying new restaurants that we could not normally afford to try. We planned another trip this September when we received a free dining code in January. This planning all happened before Tyler’s trip was approved. I think we may also keep this trip and then his Wish trip can be focused on just Tyler and what he wants to do!
I will give you a little background on his Wish Trip. At the urging of my doctor’s partner, who has a Wish child and the suggestion of my son’s physical therapist we sent in an application for Tyler to Make a Wish in February 2008. In October 2008 his Wish was denied. They explained that he did not have a termination date prior to his 18th birthday and they explained that this was a good thing, but that they could not grant his Wish. We were referred to Dream Factory. The Dream Factory that is closest to us is in Kansas City and they grant Wishes for children with life threatening and chronic illnesses. I called them and they emailed me the application. Whereas Make a Wish has a one page form and then the doctors do the rest, Dream Factory had about a 13 page form. I also included some of his diagnostic papers from the geneticists and two pages of photocopied business cards from all of his doctors. I did not mail it in until February 2009 since one of their requirements was that Tyler had to be able to say or somehow explain his Wish and he does not talk. However, we have now learned the signs for Disney Characters and combined with his other signs he can sign that he wants to fly elephants with Stitch or translated “he wants to fly on the Dumbos with Stitch”. It is too cute to see. He now can say Disney too! On Thursday Tyler’s doctor called and went over the risks of the Wish to Tyler and said that she would sign off on the Wish and fax it in to the Dream Factory. Then Friday, April 17th at 7:45 pm The Dream Factory called and said that Tyler’s Wish was approved. The plan right now is to go late November or December when the kids are out of school. Now we just need to wait for the next phone call. Right now I am excited and overwhelmed at the same time. We feel so blessed!

 

[kdzbear]

I will try to explain Tyler’s story in as few words as possible. I may write a book about him someday. In Oct. 2004 I was rear-ended at a stop sign. The woman was going 45 mph and did not stop. Bre and I were ok and I found out I was pregnant with Tyler. I was so excited. After Bre I had had a miscarriage and was told that in all likelihood I would not be able to get pregnant again without medical intervention and my husband and I chose not to go that route. I had accepted that after four years of trying that we would only have one child. At 18 weeks an ultrasound was done. It took an hour and a half. I could see something was wrong with his feet. The ultrasound technician said nothing. I waited another 45 minutes for the doctor. She came in and said that the ultrasound showed my son had bilateral club feet and they needed to do an amino to see if he had trisomy 13or 18, which would mean he would not live to birth. We did the amnio two weeks later and he had neither. He was diagnosed with a chromosome deletion on his 16th chromosome on the p arm from 11.2-13.1. Most children with a deletion are only missing 11.2-11.4 or something similar. The easiest way to explain this is imagine the chromosome is a ladder. If you are missing one rung you could probably still make the ladder work, but when you are missing 7-8 rungs it makes it difficult to use. We were sent to a geneticist in Kansas City. He explained that the 16th chromosome is one of the most densely packed chromosomes and it controls the brain, the heart and the kidneys among other things. They told me most likely Tyler would not live past birth if he made it to birth. They also said that there was one other baby on file with a deletion on the same chromosome as Tyler, but the area that his deletion covered was smaller and that baby died at 5 months of age. They suggested at 22 weeks that I terminate the pregnancy. Obviously, I chose not to.

While pregnant he underwent weekly ultrasounds, echocardiograms and lots of other monitoring. He was born on June 23, 2005. I was able to hold him for a few seconds before he was whisked off to NICU. He only stayed there for two days. When he was back in my hospital room the doctor that had previously suggested I terminate him sat in a chair and stated that she could not believe how my faith never wavered through the entire pregnancy and I had a beautiful little boy to show for it. All I can hope is at least she will think of Tyler before she suggests another mom terminates her child. However, his billirubin levels were incredibly high and he started to throw up blood. I had been readmitted to the hospital for an infection that I received when giving birth to him. So they admitted him to another building of the hospital and I was not allowed to travel that far to see him. My husband had to go back and forth between our two rooms. It turns out his billirubiun levels had skyrocketed past safe levels. They put a blindfold on him to protect his eyes and he sat under three special lights to fix his jaundice. Then three days later he was able to come home and start the next part of his journey.

He wore casts from the time he was a week old to fix his feet. The casts were plaster casts that went from his toes to his groin and they stayed wet for the first 24 hours after he had them replaced each week. He wore them for 9 weeks initially and an extra 3 after his surgery. We then went to braces with a metal bar between them to hold his feet and legs in the right positions. He now wears braces at night. He has had intensive physical and speech therapy since the day he was born. He couldn’t learn to nurse until he was 8 weeks old since his mouth was so tiny and he held his tongue so far back in his mouth. He has had many challenges including plagiocephaly, which caused him to have to wear a reshaping helmet on his head for 6 months that was adjusted weekly and later bi-weekly in Kansas City. We were driving to KC (6 hours round trip) every other week to see doctors at Children’s Mercy. One of the Ronald McDonald house staff members just had a standing reservation for us and we just had to call and tell her when we would be back. He has always responded to treatment well. He is just starting to talk a little more now, but he can sign over 300 words, which means his brain works wonderfully. He is a daredevil and studies things for a long time before he just goes and does whatever he was studying without failing. He always has a smile on his face and is just so full of life and energy. He has worn glasses since he was 1. He is on his second set of tubes for his ears. He has had Botox in his neck to help release his neck muscle to fix his torticollis. Right now he goes to special needs preschool for 2 ½ hours every day where he gets to be in a classroom with normal kids as well as attending speech and physical therapy. I can’t even explain all we have been through, but he is 3 ½ and he is doing well and still here. The two holes and open valve in his heart closed on their own and we are down to about 4 doctors right now. I am working with a group called Unique out of England and they have made a brochure about children like Tyler with a 16th chromosome deletion. Tyler has the largest deletion of all of the children, but hopefully this brochure will help other parents decide to give their children a chance in this world and let them know that they can have a happy and healthy child even if he/she is missing some DNA. He is simply an amazing little man. We still do not know what to expect, but it is just fun to watch him grow and develop a little more each day.

 

[kdzbear]

Here is a two page short trip report from last fall when I took the two little ones to Disneyland for a short trip. http://www.disboards.com/showthread.php?t=1996308 My husband had a business trip in San Diego and the little ones did not cost much to travel with and the hotel was paid for. It was a great short break. There are lots of pictures of my two littlest ones.

Then here are some pictures of all three kids from my Facebook page: http://www.facebook.com/p.php?i=1138704968&k=33L335Q3R2WM5DMFTB5ZVS

 

[5dwarves]

So glad to see you have started your wish trip PTR! I appreciate the info on the chromosome deletion Tyler has. It helps us understand more what you are going through. I loved the photos of Tyler and baby sister at Disneyland. They are both precious! Tyler seems to really enjoy the characters (when he is awake)...and baby sister has some awesome cheeks on her! I love that!

~Elisa

 

[kdzbear]

Thank you for your comments. Yes, the baby does not miss any meals. She is almost always smiling and it is such a blessing to have such an easy going child. She and Tyler really are best friends. They do everything together. The sad part is that they are at the exact same level right now so they play and communicate perfectly with one another.

I live in KS, but by doing internet searches when Tyler was little I was connected with a group in England called Unique. They are a rare chromosome disorder support group. I have helped them prepare a brochure to give to other parents who find themselves in my same situation. It has not been updated in about 2 years, but it will give you a little more background on my son and the few others like him. However, his deletion is so much larger than the others that the doctors keep telling us that things can not keep going as well as they have so far. He was never supposed to be able to crawl, walk or talk and so far we have perfected two of the three.

Here is the link: http://www.rarechromo.org/informatio...ons FTNW.pdf .

 

[keetmommy]

I am glad you got approved.....you all deserve a wonderful trip!

 

[5dwarves]

Thank you for your comments. Yes, the baby does not miss any meals. She is almost always smiling and it is such a blessing to have such an easy going child. She and Tyler really are best friends. They do everything together. The sad part is that they are at the exact same level right now so they play and communicate perfectly with one another.

I live in KS, but by doing internet searches when Tyler was little I was connected with a group in England called Unique. They are a rare chromosome disorder support group. I have helped them prepare a brochure to give to other parents who find themselves in my same situation. It has not been updated in about 2 years, but it will give you a little more background on my son and the few others like him. However, his deletion is so much larger than the others that the doctors keep telling us that things can not keep going as well as they have so far. He was never supposed to be able to crawl, walk or talk and so far we have perfected two of the three.

Here is the link: http://www.rarechromo.org/informatio...ons FTNW.pdf .

My son, Adam, was at the same level as his brother Jake (who is a year younger) and now he is at the same level as his brother, Nathan (who is 3 years younger). I understand what you are going through.

My husband calls me a chronic optimist, so when I read that the doctors tell you things cannot keep going well, my first reaction is "there is a first time for everything." I am hopeful that things will continue to go well for Tyler.

 

[kdzbear]

My son, Adam, was at the same level as his brother Jake (who is a year younger) and now he is at the same level as his brother, Nathan (who is 3 years younger). I understand what you are going through.

My husband calls me a chronic optimist, so when I read that the doctors tell you things cannot keep going well, my first reaction is "there is a first time for everything." I am hopeful that things will continue to go well for Tyler.

Thank you! I know the doctor's kept urging me to terminate the pregnancy and then did not understand why I kept saying that Tyler would be ok when they were telling me he would not be. I just kept repeating that God would not make me wait almost five years for a second child just to take him away from me! I prayed so long for a second child that he had to be fine. My husband also surprised me on a trip home from the geneticist one day. He was stating that he could not understand how all of these women on drugs could come to court with perfectly healthy children when they were on drugs the whole pregnancy. He is a city prosecutor. Then he said the most profound thing. He said, "God must have given us this baby since he knew we could take care of him and love him whereas a parent on drugs could not handle him so he gave them the perfect child". It is so true. I did not think I had the strength to deal with a special needs child when he was born, but I have learned so much and I have become a much stronger person because of him. Besides one little smile from him melts my heart!

 

[maroo]

Your kids are SOOOO cute!!

Thank you for starting a pre-trip report to share your story with us! I am so sorry that you guys have been through so much and so thankful that Sam is here to be a blessing to you guys and, now, to us!

I can't wait to watch your plans come around!!

Can I ask...when are you guys going to be there in Sept?

 

[5dwarves]

Thank you! I know the doctor's kept urging me to terminate the pregnancy and then did not understand why I kept saying that Tyler would be ok when they were telling me he would not be. I just kept repeating that God would not make me wait almost five years for a second child just to take him away from me! I prayed so long for a second child that he had to be fine. My husband also surprised me on a trip home from the geneticist one day. He was stating that he could not understand how all of these women on drugs could come to court with perfectly healthy children when they were on drugs the whole pregnancy. He is a city prosecutor. Then he said the most profound thing. He said, "God must have given us this baby since he knew we could take care of him and love him whereas a parent on drugs could not handle him so he gave them the perfect child". It is so true. I did not think I had the strength to deal with a special needs child when he was born, but I have learned so much and I have become a much stronger person because of him. Besides one little smile from him melts my heart!

I am so glad to see your husband is aware of the extra responsibilities that come with a special needs child and supportive. That is awesome. I have reminded myself several times that God doesn't give you more than you can bear. I don't think anyone who is on a wish trip ever thought they would have a special needs child, or that they would have to draw on strength they didn't know they had. Our true character shows in the midst of a crisis. I am glad to see that Tyler has parents whose character is steadfast.

Oh, and the more I think about it, the more I would definintely do both trips (if your DH can spare the time off). Disney during the holidays is suppossed to be spectacular.

 

[kdzbear]

Your kids are SOOOO cute!!

Thank you for starting a pre-trip report to share your story with us! I am so sorry that you guys have been through so much and so thankful that Tyler is here to be a blessing to you guys and, now, to us!

I can't wait to watch your plans come around!!

Can I ask...when are you guys going to be there in Sept?

We are going Sept. 12th - 20th. I think I read that that is when you are going too! We would love to meet up with you at some point! We have decided to do both trips. My husband has worked for the city for 10 years so he gets 4 weeks of vacation a year and we never use it. I would like to experience both Halloween and Christmas at Disney. We have done the MNSSHP a few years ago and it was a blast.

 

[maroo]

We are going Sept. 12th - 20th. I think I read that that is when you are going too! We would love to meet up with you at some point! We have decided to do both trips. My husband has worked for the city for 10 years so he gets 4 weeks of vacation a year and we never use it. I would like to experience both Halloween and Christmas at Disney. We have done the MNSSHP a few years ago and it was a blast.

Oh my gosh!!! YES!

My trip is going to be very strange. I am going to the Night of Joy concerts on Friday and Saturday night at DHS. And...well...I can't give it away...but I may be very busy on the 11th and 12th...all day, not just during the concert. The 13th is a Sunday and is the day I fly home (and I don't fly home until 3 something...and am planning to meet a Wish family that is flying IN that day, but have no other plans!) So maybe we can meet up. Where are you guys staying? You can PM this info to me!

And I am going to be in Disney over Christmas, too... Dec 16 - 20th...but that will be a busy and faster trip...but if you happen to have those dates, we might be able to catch up then, too!! We are doing MVMCP.

 

[ndloewen]

Thank you! I know the doctor's kept urging me to terminate the pregnancy and then did not understand why I kept saying that Tyler would be ok when they were telling me he would not be. I just kept repeating that God would not make me wait almost five years for a second child just to take him away from me! I prayed so long for a second child that he had to be fine. My husband also surprised me on a trip home from the geneticist one day. He was stating that he could not understand how all of these women on drugs could come to court with perfectly healthy children when they were on drugs the whole pregnancy. He is a city prosecutor. Then he said the most profound thing. He said, "God must have given us this baby since he knew we could take care of him and love him whereas a parent on drugs could not handle him so he gave them the perfect child". It is so true. I did not think I had the strength to deal with a special needs child when he was born, but I have learned so much and I have become a much stronger person because of him. Besides one little smile from him melts my heart!

For a minute there, I thought I was reading our family's story (just with a different chromosome deletion). Our stories are very similar. Noah has a chromosome 12q deletion (unfortunately, the least studied of all chromosomes). We too, found out by amnio and were urged to terminate. When we refused, we were told to prepare for a stillbirth. What those doctors don't know...

I remember thinking before Noah that having a special needs child has got to be one of the worst things that could ever happen to a family. Perhaps that's why God chose to show me how amazing, wonderful and joyous children like ours can be.

So glad Tyler will have his wish! Can't wait to hear more.

 

[kdzbear]

For a minute there, I thought I was reading our family's story (just with a different chromosome deletion). Our stories are very similar. Noah has a chromosome 12q deletion (unfortunately, the least studied of all chromosomes). We too, found out by amnio and were urged to terminate. When we refused, we were told to prepare for a stillbirth. What those doctors don't know...

I remember thinking before Noah that having a special needs child has got to be one of the worst things that could ever happen to a family. Perhaps that's why God chose to show me how amazing, wonderful and joyous children like ours can be.

So glad Tyler will have his wish! Can't wait to hear more.

Thank you for the support! We have been praying for Noah and following along on your trip report. This group out of England is amazing. I did not see your son's deletion in their leaflets, but until Tyler there wasn't one on his either. You should contact them. They are so supportive and provide free help! http://www.rarechromo.org/html/home.asp I helped make the leaflet under disorders and then 16th chromosome to help other parents. I know I wish the leaflet had existed when I was pregnant. Yes, God does know more than doctors. I had worked in a group home for 8 hours each Saturday and Sunday with four women that were mentally and physically challenged and I did not know how those parents had other kids after the first one or how they had the strength to take care of their children. One woman was my age and the other two were about 15 years older, but their families came to visit everyweekend.Now I know. You just take one day at a time and one victory at a time. I just hope that Tyler will be able to function on his own and will never have to live in a group home. I know that they are great and the residents get out and go on trips just like anyone else, but I just hope he doesn't end up needing it.

We enrolled Tyler in blastball and he has his first game tonight. It is a strange form of t-ball. First base honks when they jump on it. Then the fielders all stand on plastic orange bases on the infield and field balls while the other team hits. They are supposed to yell, "Blastball" when they field the ball, but Tyler can't talk so he just holds it up. I will put up some pictures after tonight's game. It is too cute for words. We went to his practice on Tuesday!

 

[Synndy]

I just read through your post in near tears

You are an incredibly brave woman and I have nothing but respect for you.

I cant believe the doctor said thast to you...

My mom was once told by a teacher that my brother (who has had various medical problems since birth... not as severe as your situation but still some very intense things) would never function past the level of a 2nd grader & he was "retarded". He has since graduated from high school at the top of his class and is very intelligent & by talking to him or seeing him... you would never know he has the slightest problem. I told my mom if I ever saw that teacher I'd prolly punch her.

It amazes me how insensitive some "professionals" can be... *sigh*

Onto happier thoughts.... congrats on getting your trip approved. You deserve it.

 

[kdzbear]

Thank you so much. The support means a lot. He really is doing so much better right now. Originally we were told we would know how severe his condition was by the age of 3, but they still don't know. We just take it one day at a time. The whole family started going to sign language class this year and Tyler is up to I think around 400 words. Little sis is doing great too. She signs skunk when she has a dirty diaper. The more Hayley learns to say words, Tyler tries to keep up with her. She is a great motivator for him.

 

[tinytreasures]

so glad I found you
what a miracle you have there

I can relate to you dh as a foster parent of special needs children we know each and every one finds their way into our house for a reason
we cry when we have to let go but the ones that have needed us the most are the ones that end up staying forever

 

[kdzbear]

so glad I found you
what a miracle you have there

I can relate to you dh as a foster parent of special needs children we know each and every one finds their way into our house for a reason
we cry when we have to let go but the ones that have needed us the most are the ones that end up staying forever

He is a miracle and the great part is that I get to hug my little miracle everyday! You are a special person to be a foster parent. I think it would be so hard to love a child and care for them knowing that you will only have them for a short time period.

 

[kdzbear]

I found this on the front page of this site and was so excited I had to share in case anyone missed it. Does this mean Haunted Mansion is included?


Morning Extra Magic Hours at Magic Kingdom

Starting April 23, Liberty Square, Frontierland, Fantasyland will be included in Morning Extra Magic Hours

 

[kdzbear]

Here is a blastball update from Thursday night. I will try to explain the game and then I will add the photos. First the fielding team stands in the field on rubber bases spread out from first to third bases. There are five kids on each team. Then one team bats through its entire order and then they switch spots. Once the player hits the ball, they run and jump on first base which honks when jumped on. Then they go back to the bench. They let each team bat through the order three times and then the game is over. It is played with a heavy rag type ball so the kids don't need gloves to field the ball. I hope this is making sense. It is too cute to watch!

Hayley before the game

Tyler is ready for the ball

Tyler hitting the ball

Tyler running to first

Tyler reaching first base

His team fielding a ball

Getting ready to hit

Contact!

Fielding again!

Waiting for the ball

Sorry for posting so many pictures. I took a ton of photos that night since it was his first time playing a team sport. He did so great. The whole crowd was cheering for him. It was amazing!