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Old 04-20-2009, 11:30 AM   #1
kdzbear
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Tyler's Wish Trip - Nov. 20-25, 2009 / Dream Factory

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!
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Tyler's Wish Trip (Nov. 20-25, 2009): http://www.disboards.com/showthread.php?t=2154359 Sept. 12-20, 2009 Trip report: http://www.disboards.com/showthread.php?t=2292505

Last edited by kdzbear; 08-10-2009 at 11:51 PM. Reason: updating trip date
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Old 04-20-2009, 11:31 AM   #2
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Tyler's Story

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.
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Tyler's Wish Trip (Nov. 20-25, 2009): http://www.disboards.com/showthread.php?t=2154359 Sept. 12-20, 2009 Trip report: http://www.disboards.com/showthread.php?t=2292505
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Old 04-20-2009, 12:31 PM   #3
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Family pictures

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=1138...R2WM5DMFTB5ZVS
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Tyler's Wish Trip (Nov. 20-25, 2009): http://www.disboards.com/showthread.php?t=2154359 Sept. 12-20, 2009 Trip report: http://www.disboards.com/showthread.php?t=2292505
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Old 04-20-2009, 01:34 PM   #4
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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
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Old 04-20-2009, 02:11 PM   #5
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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%20FTNW.pdf .
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Tyler's Wish Trip (Nov. 20-25, 2009): http://www.disboards.com/showthread.php?t=2154359 Sept. 12-20, 2009 Trip report: http://www.disboards.com/showthread.php?t=2292505
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Old 04-20-2009, 03:03 PM   #6
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I am glad you got approved.....you all deserve a wonderful trip!
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Old 04-20-2009, 03:41 PM   #7
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Quote:
Originally Posted by kdzbear View Post
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%20FTNW.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.
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Old 12-04-2009, 12:57 AM   #8
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Quote:
Originally Posted by kdzbear View Post
I'm just now going back to the beginning...I was wondering if you have ever heard of CDO? Chromosome Deletion Outreach? (I think their site is CDO.org but don't quote me on that). They are US based and raise money for research (no money is solicited from members or required to join) and offer a database and support group for families. They even offer a list of families in your state/area that are working with a chromosomal abnormality (that have approved their info be shared). It sounds like your son's is extremely rare but certainly his challenges are shared by other kids with "syndromes". My daughter is still undiagnosed, but every doctor in several states have agreed she seems to have a genetic syndrome. It was actually her geneticist who submitted her paperwork for MAW, even though she is undiagnosed. Okay, sorry for that rambling. Didn't know if you knew about CDO and I can tell you are the type of parent that does her research.
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