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! :wizard:

[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! :cutie: 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%20FTNW.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%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.

[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]

:goodvibes

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! :hug:

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.:santa:

[kdzbear]

:goodvibes

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! :hug:

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. :wizard:

[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 :lovestruc

[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 :lovestruc

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. :grouphug:

[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!

http://i208.photobucket.com/albums/bb1/kdzarchan/Blastball/Hayleyatthegame.jpg
Hayley before the game

http://i208.photobucket.com/albums/bb1/kdzarchan/Blastball/Ready.jpg
Tyler is ready for the ball

http://i208.photobucket.com/albums/bb1/kdzarchan/Blastball/Ahit.jpg
Tyler hitting the ball

http://i208.photobucket.com/albums/bb1/kdzarchan/Blastball/Runningtofirst.jpg
Tyler running to first

http://i208.photobucket.com/albums/bb1/kdzarchan/Blastball/Reachingfirstbase.jpg
Tyler reaching first base

http://i208.photobucket.com/albums/bb1/kdzarchan/Blastball/Runningfortheball.jpg
His team fielding a ball

http://i208.photobucket.com/albums/bb1/kdzarchan/Blastball/Readytohit.jpg
Getting ready to hit

http://i208.photobucket.com/albums/bb1/kdzarchan/Blastball/Contact.jpg
Contact!

http://i208.photobucket.com/albums/bb1/kdzarchan/Blastball/Tylerwaitingfortheball.jpg
Fielding again!

http://i208.photobucket.com/albums/bb1/kdzarchan/Blastball/Waitingfortheball.jpg
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!

[maroo]

Oh! He is SOOOO cute!

And this just about makes me want to cry! We take a game like baseball for granted...how awesome to see your son playing! And it looks like he did GREAT!!


:cheer2: :cheer2: Go Tyler, Go! :cheer2: :cheer2:

[BeckySob]

If blastball isn't cool, then I don't know what is!! He must've had soooooo much fun! Thanks for sharing them photos! They put a smile on my face.:)

[kdzbear]

Now that I have Thursday's photos of Blastball up, I will work on Tyler’s newest surprise. We went to Lawrence for my brother’s wedding this weekend. Then on Sunday the Dream Factory was having Dream Factory Day at the K. I was told by another Disboard member to not miss any of the events that they put on. The KC chapter puts on four events each year for Wish kids and you can attend until you are 18 or I think that is the age. Tyler did not get on the list for free tickets since he had just been approved, but we were invited to purchase tickets on our own and participate in all of the other festivities. So, we showed up at 10:30 am for the picnic in lot J of Royal’s Stadium. We were immediately greeted by Deb, who is in charge of this chapter. She recognized Tyler from his photos. They just happened to have an extra four tickets, so we got free tickets too! We checked in and were told to go and get our free shirts. The whole family except for my husband wore them over their current shirts. Then we were invited to get in line to get our picnic food. It was hot dogs, cheeseburgers, chips, soda, water and cookies or brownies.

Here are Tyler and Hayley enjoying lunch
http://i208.photobucket.com/albums/bb1/kdzarchan/Dream%20Factory%20Day%20at%20the%20K/TylerandHayleyenjoylunch.jpg
and dessert
http://i208.photobucket.com/albums/bb1/kdzarchan/Dream%20Factory%20Day%20at%20the%20K/Hayleyenjoysdessertatthepicnic.jpg

Then we walked from gate A to gate E near the back of the stadium. Then we waited about a half an hour until it was our turn to enter the park.
http://i208.photobucket.com/albums/bb1/kdzarchan/Dream%20Factory%20Day%20at%20the%20K/Enteringthetunnel.jpg
Here we are entering from the tunnel

http://i208.photobucket.com/albums/bb1/kdzarchan/Dream%20Factory%20Day%20at%20the%20K/Leavingthetunneltowalkthewarningtra.jpg
Walking the warning track

http://i208.photobucket.com/albums/bb1/kdzarchan/Dream%20Factory%20Day%20at%20the%20K/AaronandTylerwalkthewarningtrackhan.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/Dream%20Factory%20Day%20at%20the%20K/Hayleywalksthewarningtrack.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/Dream%20Factory%20Day%20at%20the%20K/WalkingthewarningtrackattheK.jpg
Tyler, Bre and my husband are about half way up in this picture
http://i208.photobucket.com/albums/bb1/kdzarchan/Dream%20Factory%20Day%20at%20the%20K/Hayleywantstowarmupinthebullpen.jpg
Hayley wants to practice pitching in the bullpen
http://i208.photobucket.com/albums/bb1/kdzarchan/Dream%20Factory%20Day%20at%20the%20K/Beforethegame.jpg
Before the game from the outfield fence
http://i208.photobucket.com/albums/bb1/kdzarchan/Dream%20Factory%20Day%20at%20the%20K/Scoreboardfromthefield.jpg
Scoreboard from the field
http://i208.photobucket.com/albums/bb1/kdzarchan/Dream%20Factory%20Day%20at%20the%20K/Viewfromthefield.jpg
View from the outfield on the warning track of the field
http://i208.photobucket.com/albums/bb1/kdzarchan/Dream%20Factory%20Day%20at%20the%20K/TheLittleK.jpg
The Little K is in the outfield where they have built a giant kid’s play area. There is a free playground. Then there is a mini-ball park where you can redeem tokens to hit the ball five times and then run the bases. There is also a carousel, a pitching area, a running area, mini-golf and I think something else. Tyler did the batting and running the bases.
http://i208.photobucket.com/albums/bb1/kdzarchan/Dream%20Factory%20Day%20at%20the%20K/Tylerpreparestobat.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/Dream%20Factory%20Day%20at%20the%20K/Tyleratbat.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/Dream%20Factory%20Day%20at%20the%20K/TylerbattingatthelittleK.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/Dream%20Factory%20Day%20at%20the%20K/Runningfrom2ndto3rd.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/Dream%20Factory%20Day%20at%20the%20K/Runninghomefrom3rdbase.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/Dream%20Factory%20Day%20at%20the%20K/Tylerreacheshomeplate.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/Dream%20Factory%20Day%20at%20the%20K/RoyalsvDetroit.jpg
Actual photo of the game

[5dwarves]

Very cool pics. Makes me wish we were having hotdogs and garlic fries for dinner tonight!

[sammie girl]

Oh that game Sunday looked like so much fun. I would have loved to go and could have because my son't ballgame was cancelled. I thought about going but decided against it since we didn't have any tickets and didn't RSVP.

I am glad you went and had fun. We won't be at the fishing derby because it is my kid's gymnastics recital.:( Bummer, huh. Hopefully we will get to go to the movie night. It would be great if we could find you at an event. My DD want to meet your son. I told her that you only lived a few hours away in KS. She instantly wanted to drive over the bridge to find your house. LOL. I had to explain that KS was big and not everyone lived just over the bridge from our house. (we live right on the MO. KS border.)

Your children are very cute and look so happy in the pics, I don't blame you for taking so many because I would have also. Thanks for sharing them with us.

[TNKBELL]

Hey K!! My heart is bursting with pride over my godson!! I'm so happy for you all and I'll admit it...a little jealous!!:flower3:

Have a great time, it's almost as fun planning it, huh?:hug:

Hugs to the kiddos!!

[maroo]

I am trying to get all caught up and realized I totally missed this last set of pics! What a GREAT party and such a good idea...to do regular things during the year!

I loved the picture from the outfield. I have never seen a big field from the outfield like that! :goodvibes

Anyway...I am glad I am caught up and can't wait to see more pics! :)

[kdzbear]

Since yesterday was Mother’s Day, I wanted to share this song with you. It is on the 4th Signing Time DVD. I copied the lyrics from the Signing Time website. I hope this is ok. You can see the words to the song, “Shine” by going to www.signingtime.com. It is the site that produces the best DVDs to learn sign language. They have helped Tyler a lot. I think this song summarizes Tyler. I wish you could hear it! There is a link on the website to hear it play, but I can’t get it to work:
http://www.signingtime.com/resources/music-songs/

SHINE
Zane Alexander Gardner (11/12/1998-2/11/2002)
Zane- you taught me that heroes come in all sizes. Thank you for helping me let go of the typical timelines
so that Lucy was free to reach milestones at her own pace. You helped me believe in Lucy and now Lucy is
inspiring so many others. You gave me hope, and hope is the ultimate gift. You still inspire me. ~R
Sometimes I see you stuck
For such a long time
A daily nothing new
Pretend I don’t mind
With lists of things you’ll never do
Until somehow you do
And you do — you do — you shine
The days and months and years,
they run together
Is it just one day? Or is this forever?
You’ve taught me in your lifetime
More than I’d learned in mine
And you do, you do, you shine
Shine Shine Shine Shine Shine
Shine your light on me
Shine Shine Shine Shine Shine
everyone will see
Shine Shine Shine Shine Shine
I’m so glad you are mine
And you’ll shine in your own time
Well, maybe I’m too close to see you clearly
Or is it now my role to simply believe?
You’re just one of those mysteries
That may never be solved in time
But you do — you do — you shine
And Sammy will do what Sammy will do when Sammy is ready to do it
And Trevor will do what Trevor will do when Trevor is ready to do it
And Lucy will do what Lucy will do when Lucy is ready to do it
And they’ll do it in their own time
Yeah, they’ll Shine Shine Shine Shine Shine
Shine your light on me
Shine Shine Shine Shine Shine
And everyone will see
Shine Shine Shine Shine Shine
I’m so glad you are mine
And you’ll shine, and you shine
© Two Little Hands Productions 2008
www.signingtime.com

[maroo]

Since yesterday was Mother’s Day, I wanted to share this song with you. It is on the 4th Signing Time DVD. I copied the lyrics from the Signing Time website. I hope this is ok. You can see the words to the song, “Shine” by going to www.signingtime.com. It is the site that produces the best DVDs to learn sign language. They have helped Tyler a lot. I think this song summarizes Tyler. I wish you could hear it! There is a link on the website to hear it play, but I can’t get it to work:
http://www.signingtime.com/resources/music-songs/

SHINE
Zane Alexander Gardner (11/12/1998-2/11/2002)
Zane- you taught me that heroes come in all sizes. Thank you for helping me let go of the typical timelines
so that Lucy was free to reach milestones at her own pace. You helped me believe in Lucy and now Lucy is
inspiring so many others. You gave me hope, and hope is the ultimate gift. You still inspire me. ~R
Sometimes I see you stuck
For such a long time
A daily nothing new
Pretend I don’t mind
With lists of things you’ll never do
Until somehow you do
And you do — you do — you shine
The days and months and years,
they run together
Is it just one day? Or is this forever?
You’ve taught me in your lifetime
More than I’d learned in mine
And you do, you do, you shine
Shine Shine Shine Shine Shine
Shine your light on me
Shine Shine Shine Shine Shine
everyone will see
Shine Shine Shine Shine Shine
I’m so glad you are mine
And you’ll shine in your own time
Well, maybe I’m too close to see you clearly
Or is it now my role to simply believe?
You’re just one of those mysteries
That may never be solved in time
But you do — you do — you shine
And Sammy will do what Sammy will do when Sammy is ready to do it
And Trevor will do what Trevor will do when Trevor is ready to do it
And Lucy will do what Lucy will do when Lucy is ready to do it
And they’ll do it in their own time
Yeah, they’ll Shine Shine Shine Shine Shine
Shine your light on me
Shine Shine Shine Shine Shine
And everyone will see
Shine Shine Shine Shine Shine
I’m so glad you are mine
And you’ll shine, and you shine
© Two Little Hands Productions 2008
www.signingtime.com


Oh! I love it! I can't listen to it here...but I love the lyrics...and I am about to copy this whole thing over on the Wish Trippers thread...we could use hearing that over there! Thank you for sharing it with us!!!! :hug:

[kdzbear]

New Update:

I had not heard anything from the Dream Factory in awhile so I emailed my contact to ask questions. First, I was informed that no one has volunteered to oversee Tyler's Dream. Then the head of the KC group asked for our preferred dates again. I sent them to her. She had mentioned that they had condos for us to stay at. I asked if he could stay at Give Kids the World and I was told that his diagnosis will not allow him to stay there. She said that only kids with life threatening illnesses can stay there.

I am just not sure what to do right now. I am so sad and frustrated. I don't know how to get the word out about a condition that no one else has. How do I explain to people what my son has to go through on a daily basis? How do I tell them that if he makes it to a marrying age that I may have to tell him that he can never have kids? I just don't understand why life is so unfair to this little guy that has done nothing to deserve this.

I am sorry for my venting. I am just not sure where to turn right now. Thanks for listening.

[ndloewen]

Oh, I'm so sorry to hear that. I never knew that there were certain conditions for GKTW. I mean, I thought if a wish foundation approved you, then you could chose to stay there. :confused3 That doesn't make any sense, especially when your son's condition is unknown...how can they say it's not life threatening??

Has your son's chromosome deletion caused health problems that have been life threatening? My son's chromosome deletion (also very unknown) has caused multiple health issues that have almost taken his life many times over, which is what qualifed him for a wish. If Tyler has had such complications, perhaps you could point that out to your wish foundation as life threatening, or have your doctor write a letter to that effect??

So sorry you have to deal with this. It's the last thing you need.

[kdzbear]

I want to apologize for my outburst earlier. I know that we are getting a Dream and I should not complain. I guess I was just disappointed that Tyler could not experience Give Kids the World. I have contacted his geneticist in KC and we may have to take a trip up there to see the geneticist. We refer to him as the “Doom and Gloom” Doctor, but right now it appears that doom and gloom is what these agencies need. I am hoping he can help. If not, we will enjoy the gift we have been given. We are blessed that are son will live past his Wish trip whereas I know that many children will not have this opportunity. We are blessed to have him in our lives.

I have also been having problems with my son’s case manager. She did not show up for his last IEP and it was DH and I and then all of the staff members that deal with Tyler at his school. It felt as if no one was on our side. I know that they do the best they can with the resources that they have, but there are 24 kids in a Pre-K class that is a mix of 3 and 4 year olds, special needs and normal kids. I wanted him to go to a more specialized pre-school, but they lost their funding through the state in the fall so he lost his chance to go there. Then his IEP was filled out wrong as his speech therapist had never written one before. His physical therapy needs were put on the wrong page so I did not know that he was not receiving physical therapy until December and his IEP did not get corrected until February. Needless to say his torticollis worsened. His club feet have also gotten worse. He was supposed to be done with his AFOs when he turned three and he is almost four and there is no end in sight. It is really apparent when he tries to run. He trips over his feet a lot. This setback occurred after I spent two years of taking him to hydrotherapy and physical therapy bi-weekly and almost had the problems fixed. He has been receiving speech therapy the whole year, but he does not say many more words and he still cannot feel food in his mouth and chokes often when he eats.

Then today my friend told me that her autistic son just started to receive compensation for her son, who just turned four. He receives free pull-ups, diapers and wipes. I emailed Tyler’s case manager to ask how I would get Tyler to qualify for this and she tells me that the form had to be turned in by September 22, 2008. She is just telling me now! She told me that I could apply this fall for 2010. If Tyler is still wearing diapers in 2010, I will pull my hair out. I am going to work really hard at potty training him this summer. I have been told that the delay is due to low muscle tone.

However, I just received some happy news for our trip for this September. I have diligently been watching airfare. The lowest one way it had gone has been $99 before taxes. It was $89 two days ago when I called AAA, but I procrastinated and did not book as I knew it was a 3 day sale. I have checked it several times today and then all of a sudden tonight it was $79 before taxes. This is only the return part. So, now we have a return flight from Orlando and I just need to find a sale on a flight to get there. Finally, some good news to share!

[maroo]

I want to apologize for my outburst earlier. I know that we are getting a Dream and I should not complain. I guess I was just disappointed that Tyler could not experience Give Kids the World. I have contacted his geneticist in KC and we may have to take a trip up there to see the geneticist.

Please don't feel like you have to apologize! I would be upset, too. :hug:

We refer to him as the “Doom and Gloom” Doctor, but right now it appears that doom and gloom is what these agencies need. I am hoping he can help. If not, we will enjoy the gift we have been given. We are blessed that are son will live past his Wish trip whereas I know that many children will not have this opportunity. We are blessed to have him in our lives.

:hug: I am glad you are going back to the geneticist and hopefully they can shed some light on all of the issues!

I have also been having problems with my son’s case manager. She did not show up for his last IEP and it was DH and I and then all of the staff members that deal with Tyler at his school. It felt as if no one was on our side. I know that they do the best they can with the resources that they have, but there are 24 kids in a Pre-K class that is a mix of 3 and 4 year olds, special needs and normal kids. I wanted him to go to a more specialized pre-school, but they lost their funding through the state in the fall so he lost his chance to go there. Then his IEP was filled out wrong as his speech therapist had never written one before. His physical therapy needs were put on the wrong page so I did not know that he was not receiving physical therapy until December and his IEP did not get corrected until February. Needless to say his torticollis worsened. His club feet have also gotten worse. He was supposed to be done with his AFOs when he turned three and he is almost four and there is no end in sight. It is really apparent when he tries to run. He trips over his feet a lot. This setback occurred after I spent two years of taking him to hydrotherapy and physical therapy bi-weekly and almost had the problems fixed. He has been receiving speech therapy the whole year, but he does not say many more words and he still cannot feel food in his mouth and chokes often when he eats.

Oh no!! IEPs are such a pain! Gosh, I hope all of that gets fixed. More hugs your way! :hug:

Then today my friend told me that her autistic son just started to receive compensation for her son, who just turned four. He receives free pull-ups, diapers and wipes. I emailed Tyler’s case manager to ask how I would get Tyler to qualify for this and she tells me that the form had to be turned in by September 22, 2008. She is just telling me now! She told me that I could apply this fall for 2010. If Tyler is still wearing diapers in 2010, I will pull my hair out. I am going to work really hard at potty training him this summer. I have been told that the delay is due to low muscle tone.


However, I just received some happy news for our trip for this September. I have diligently been watching airfare. The lowest one way it had gone has been $99 before taxes. It was $89 two days ago when I called AAA, but I procrastinated and did not book as I knew it was a 3 day sale. I have checked it several times today and then all of a sudden tonight it was $79 before taxes. This is only the return part. So, now we have a return flight from Orlando and I just need to find a sale on a flight to get there. Finally, some good news to share!

:banana: :banana: :banana: That is GREAT airfare!! :) Fabulous news!

I have had no such luck! I guess that is what I get for flying on Labor Day weekend and a return flight on a Sunday. :thumbsup2




I can't wait to meet you guys!! :)

[kdzbear]

Maroo,

We can't wait to meet you either. We are flying home on a Sunday. I just kept checking the flights every couple of hours. I thought yesterday was Wednesday. I guess I am off a day this week. In the morning the flights were still $89 coming back, which is the cheapest they have been in months. Then when I went to show my husband last night they dropped to $79. You might want to check again. Lots of the airlines reduced their prices yesterday for some reason. I have found a bunch of outgoing flights for $79 now too. We just need to decide if we want to fly on one airline out and another back. If you want to PM me your flight details I would be glad to search for you. I love planning travel.

I have contacted Tyler's geneticist and am waiting for a call back. I also contacted Prisca at Unique and she told me that there was just a new study published in the European Medical Journal about Tyler's condition so I may have more information soon. I did send her an update too so she can update the leaflet on Tyler's condition.

Ndloewen – Thank you for the kind words and support!

Thank you for everyone's support!

[kdzbear]

More good news! Tyler had an eye doctor’s visit today. Both of his astigmatisms have remained the same and have not worsened. His vision is still the same as before. The doctor explained as he grows and his eyes grow it will eventually get worse. I asked what his vision was such as 20/40 and the doctor explained that you can’t measure vision that way unless the person can communicate with the doctor such as reading the letter chart. He used other tests to determine his current vision. Then we went and picked out a new pair of glasses. They are the same as his old ones, but they have a new one year warranty, which is invaluable with Tyler and how he treats his glasses. We are also down to once a year appointments instead of every six months.

Then the genetics clinic at Children’s Mercy called me. The genetics counselor is getting some more information about new updates on Tyler’s condition and they will call me back on Monday afternoon. Maybe, we will get some useful information!

[kdzbear]

Several updates:

1) My husband wanted to see what I was spending all of my time doing on the internet and he saw in my inbox all of the disboards emails. I showed him Noah’s wish trip report. He thinks Noah is so cute! Then he asked if we had one of these crazy things. I said yes and he wanted to read it. First, he said that I wrote a book! Then he pointed out several other things. First, when Tyler came out of NCIU after 2 days, he spent 2 more days in special care before going home for one day and being readmitted for 3 more. I guess I shortened the time he was in the hospital. Second, he did not like that I listed his occupation, but I am leaving anyway.

2) We received the date that we will arrive in Orlando and it is November 21st. The Dream Factory has reserved a condo for us. I do not know anything else right now.

3) I probably should not have done what I did next, but I did it anyway. It has been a frustrating week and so I sent a very polite letter to GKTW and asked why Tyler did not qualify to stay there. I included some of the background of what he went through. I figure at this point it cannot hurt – at least I hope it won’t hurt anything. I hope that I do not upset the apple cart at the Dream Factory.

4) I talked to one of the geneticists staff members on Monday. They took down some more information on Tyler. They were not aware of the new European Journal of Medical Genetics study and they were going to try to look it up. It contains new information about Tyler’s missing chromosome parts. They also said that there was a new FISH test out to provide more details about what exactly Tyler is missing and how it will affect him, but I am not sure our insurance will cover it. I explained to her that we had had four tests done when he was born and they totaled over $4,000. They did one test through the amino, tested me, tested DH and then the doctor at the hospital without our authorization tested him again once he was born. It took my husband almost a year of fighting with the insurance company to finally get them paid and they were refusing to do so. So, I am not sure if we will have this test done. Now I am just waiting on the counselors to research more, talk to the geneticist and call me back. They also know about my problems I am having with his wish.

I am very grateful that he had been granted a wish. I hope it does not sound otherwise. Thank you again for everyone’s support.

[Synndy]

Just throwing my 2 cents in but I dont think you sound ungrateful at all.

Everyone is allowed to complain a little & considering everything you have been through youre allowed to complain a lot! ha ha


Really though, youre not complaining & what are friends for if you can't vent a bit.

It's good you wrote that letter... like you said, whats the worst that could happen?

Every summer here our one radio station throws a huge concert & the only way to get tickets was to win them. My friend & I have been trying to get some so we can go. The other day they had a thing they advertised on the radio that if you got down to a local car dealership from 12-1 you could win. My friend was there from 111 about 1:15 & didnt win. The guy who was running it was being a jerk & it wasnt like they advertised. You had to enter in a basket to win & winners were drawn every 5 mins. People were walking up & dropping their ticket in & winning since the bin with tickets wasnt being shuffled. She said there was like 20 people there before 12 & NONE of them won. Needless to say she was upset.

She called me & I told her to write an email to the station (my story has a point after all, ha ha). I told her to very nicely explain what happened. She wasnt so much upset over the fact she didnt win but the unfair way it was handled & advertised.

She got an email back about an hour later saying that not everyone could win but he understood why she was upset & told her he was sorry & gave her a 4 pack of tickets.

Moral of the story..... writing a letter cant hurt :lmao:

I hope things work out some more for you & I'm sending some good karma your way :goodvibes

[ndloewen]

Several updates:

1) My husband wanted to see what I was spending all of my time doing on the internet and he saw in my inbox all of the disboards emails. I showed him Noah’s wish trip report. He thinks Noah is so cute! Then he asked if we had one of these crazy things. I said yes and he wanted to read it. First, he said that I wrote a book! Then he pointed out several other things. First, when Tyler came out of NCIU after 2 days, he spent 2 more days in special care before going home for one day and being readmitted for 3 more. I guess I shortened the time he was in the hospital. Second, he did not like that I listed his occupation, but I am leaving anyway.

2) We received the date that we will arrive in Orlando and it is November 21st. The Dream Factory has reserved a condo for us. I do not know anything else right now.

3) I probably should not have done what I did next, but I did it anyway. It has been a frustrating week and so I sent a very polite letter to GKTW and asked why Tyler did not qualify to stay there. I included some of the background of what he went through. I figure at this point it cannot hurt – at least I hope it won’t hurt anything. I hope that I do not upset the apple cart at the Dream Factory.

4) I talked to one of the geneticists staff members on Monday. They took down some more information on Tyler. They were not aware of the new European Journal of Medical Genetics study and they were going to try to look it up. It contains new information about Tyler’s missing chromosome parts. They also said that there was a new FISH test out to provide more details about what exactly Tyler is missing and how it will affect him, but I am not sure our insurance will cover it. I explained to her that we had had four tests done when he was born and they totaled over $4,000. They did one test through the amino, tested me, tested DH and then the doctor at the hospital without our authorization tested him again once he was born. It took my husband almost a year of fighting with the insurance company to finally get them paid and they were refusing to do so. So, I am not sure if we will have this test done. Now I am just waiting on the counselors to research more, talk to the geneticist and call me back. They also know about my problems I am having with his wish.

I am very grateful that he had been granted a wish. I hope it does not sound otherwise. Thank you again for everyone’s support.

Awwww...thanks! Glad your hubby enjoyed our trip report too. I really need to get working on it again, while the details are still somewhat fresh.

I'm glad you wrote the letter. I don't think there is anything wrong with that. At least you will get a definate answer from GKTW and can go from there.

[maroo]

I am glad you wrote a letter! :)

And hopefully, between that and the geneticist appt, you guys can get some more information and hopefully it will help get the wish trip stuff straightened out!

And I don't think you are being ungrateful at all!!! :)

[sammie girl]

I agree. I think it is good to give them a phone call or a letter about not staying there. I already told you about our experience with this chapter. I don't think you are being ungrateful. I also felt bad for a bit after complaining about our experience but then realized that this is OUR SICK child's dream and it should be as perfect as we parent's can make it. Like many have said it is a once in a lifetime experience. Even though some cases are worse than others it doesn't mean our kid's aren't suffering, feeling left out and different.

You are doing a good job standing up for your son and getting questions answered.

I am glad you have your dates and hopefully will be better informed than we are.:lmao:

[kdzbear]

Well, the good news is we are going to Orlando on November 21st and it looks like we will be there for Thanksgiving. The bad news is that we will not be able to stay at Give Kids the World. Unfortunately, GKTW simply took the letter I sent them and gave it back to the Dream Factory. There must be a reason for this that I do not understand yet. I am sure that Tyler will not know the difference and we will make sure that he enjoys his Wish. Everything happens for a reason, right? :wizard:

I still have not heard back from the geneticist and I think I will call them back on Wednesday if I do not hear anything soon.

Right now I am trying to finish writing a curriculum for VBS, which is in 2 weeks. We had two old "scripts", but they both are missing lots of important pieces. I think I am down to games and prayer time! Wahoo! Then I am back to planning our fall Disney trip.

[sammie girl]

I am sad to hear about GKTW but I think you will have a magical time anyway. Are you going to the fishing day this Sat.? I heard they are alot of fun and am soooo sad we will miss it. My kids have their gymnastics recital so that takes priority. You will have to let me know if you go or not. My dd still wants to meet your son and I can't seem to get through to her that you don't just live over the bridge from us:rotfl: She doesn't understand that Kansas is big and not everyone lives just across the water.:rotfl2:

Oh planning VBS sounds like so much fun. Even though my hubbie is Catholic and my kids go to Catholic school(up until today that is:rolleyes:) I have remained a presbytarian. My kids go to mass and they also go to my church which has more activities and things kids can relate to. I thought it would confuse them but realize they are getting the best of both worlds through their experience with religion and will make their own decision when they are old enough.

Can't wait to read more about your planning.

[maroo]

Do you know where you will get to stay yet?

I am disappointed that you can not stay at GKTW. But...we did not stay there, either...we got to visit that very first day, and definitely thought it was a magical place...but the trip was still the best ever!

Do you know what type of tickets you guys get? Or how many days you are able to stay? How cool that you will be there over Thanksgiving! :thumbsup2

[kdzbear]

We don't have any more information yet. We just know that it is a condo in Orlando and we will arrive on Nov. 21st. I am a little sad that there are no Mickey's Christmas parties that week. I am hoping that when we go to the Dream Factory's Fishing for Dream Event this weekend we will meet our volunteer. The last I heard no one had selected Tyler yet. The head of the KC chapter called and made the reservations for our date so my husband could request the time off. I am not sure if we will ever get any more detailed information. I am just going to go with the flow. I will make our September trip super magical, just in case! ;)

[sammie girl]

We don't have any more information yet. We just know that it is a condo in Orlando and we will arrive on Nov. 21st. I am a little sad that there are no Mickey's Christmas parties that week. I am hoping that when we go to the Dream Factory's Fishing for Dream Event this weekend we will meet our volunteer. The last I heard no one had selected Tyler yet. The head of the KC chapter called and made the reservations for our date so my husband could request the time off. I am not sure if we will ever get any more detailed information. I am just going to go with the flow. I will make our September trip super magical, just in case! ;)

I have been told that it depends how the doctor fills out the paperwork. Maybe he didn't put that your ds condition is at times life threatening. Thought maybe you want to check into that.

[kdzbear]

Sammie Girl - thanks! I think we are at peace with the way things are. Everything happens for a reason. My husband took a day off of work in June and we were going to visit my parents, but I had an event the Saturday before so it would not work. He still has the day off and it just happens that that is the day the genetics counselor can meet with us in KC. We will see what they have to say. It is not for about 3 weeks.

Then this Saturday is the Dream Factory's Fishing for Dreams Event. Tyler should have fun at this. Hopefully there will be someone in charge of Tyler's Wish by this weekend and we will get to meet them! I will post pictures when we get back! :wizard:

[kdzbear]

On Saturday we were able to attend Dream Factory’s Fishing for Dreams Event. It was located in someone’s backyard at a shared lake. I do not have a picture of the house it was at, but one of the pictures shows the house on the other side of the lake. That gentleman came out and opened up his yard for the event too! They had Sponge Bob and other kids’ fishing poles for the kids to use. Then they had either hot dogs or worms in cups for the kids to use as bait. Some adults brought their own poles. The kids fished for about an hour and then it was time for lunch. They had burgers, hot dogs, chips, dessert and later ice cream bars. He fished for about another hour and a half after lunch. Tyler loved fishing and did not want to leave.

I also met a wonderful mom and her son. Her son had gone on a Dream to Universal which also included tickets to Disney. They also stayed at a condo that was not GKTW. She provided me with some great information. She had never heard of Disboards so I sent her a link to come on over! Oh, still no one has volunteered to take Tyler's Dream and be in charge yet!

Here are some photos from the event:

http://i208.photobucket.com/albums/bb1/kdzarchan/Fishing%20for%20Dreams%20June%206_2009/Firstcatch.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/Fishing%20for%20Dreams%20June%206_2009/Breannascatfish.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/Fishing%20for%20Dreams%20June%206_2009/Doublecatch.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/Fishing%20for%20Dreams%20June%206_2009/Tylerscatch.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/Fishing%20for%20Dreams%20June%206_2009/Babyfish.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/Fishing%20for%20Dreams%20June%206_2009/Groupshot.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/Fishing%20for%20Dreams%20June%206_2009/Hayley.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/Fishing%20for%20Dreams%20June%206_2009/Onelastcast.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/Fishing%20for%20Dreams%20June%206_2009/Endoffishing.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/Fishing%20for%20Dreams%20June%206_2009/Tylersdonefishing.jpg

[Matt1026]

Those are great pictures. That looks like so much fun. What a great ideal for the fishing.

[kdzbear]

Thank you. The Dream Factory is great in that they provide wish recipients with four activities a year to attend in addition to granting their wish. Once you are on their invite list, you stay on it.

Tyler had a blast fishing. He know holds up his hands about six inches apart and says, "Fish". He is trying to show how big his fish he caught was. He wants to go again!

[kdzbear]

Tyler saw his orthopedic doctor yesterday. He do not have to do the AFOs that go inside his shoes. However, we are going backwards again. As soon as his new AFOs are ready, he has to have the bar between them at night again to help his feet to turn back out. We thought we would be done with braces by age 3 and now he is turning 4 on Tuesday and we are back where we were at at nine months! Hopefully, this will help with his tripping problem and we will get his feet back on track!

Still no news from the Dream Factory.

[maroo]

Tyler saw his orthopedic doctor yesterday. He do not have to do the AFOs that go inside his shoes. However, we are going backwards again. As soon as his new AFOs are ready, he has to have the bar between them at night again to help his feet to turn back out. We thought we would be done with braces by age 3 and now he is turning 4 on Tuesday and we are back where we were at at nine months! Hopefully, this will help with his tripping problem and we will get his feet back on track!

Still no news from the Dream Factory.


Bless your heart! :hug: I am so sorry that you guys are struggling.

And I am sorry that you guys have yet to hear from the Dream Factory. :confused3

Hopefully they can get you guys back on track. Hugs to you guys! :grouphug:

[kdzbear]

We went to KC yesterday and saw the genetics counselor who also had the geneticist come in and look Tyler over. Tyler was too funny. The doctor wanted to feel his head to see how his plagiocephaly was doing and in return Tyler had to feel the doctor's head. I am not sure the doctor knew what to think. We now need to do a swallow test to determine if Tyler's feeding issues are speech related and in need of more speech therapy or if they are related to a recessed chin and small mouth and in need of seeing the cranial facial doctor again. We are also going to see a local specialist to determine a base line special needs assessment. The geneticist also feels that Tyler should be receiving OT in addition to Speech and PT. Then they are trying to get pre-approval through insurance to do another genetics test to determine the exact break points of Tyler's chromosome deletion. They are still having a hard time believing that it is so large even though he has been tested twice. The new technology is supposed to break it down even further. I just wanted a few answers and I opened a whole new can of worms. We go and see his pediatrician on Thursday.

Today we are celebrating his birthday. Tyler turns four today! :bday:party:pixiedust:

[Corrine 1973]

Happy Birthday, Tyler!!!!:bday::bday:

[MomTo4+more]

I just started reading your ptr. What a sweet, cheerful boy Tyler looks like! I saw you were working on curriculum for VBS. How did it all come together? Our VBS is in a week and I still need to finish typing out the preschool curriculum. I have it all on paper, but it's in my crazy shorthand, so no one else would understand it! This summer is going so fast! I hope your VBS was great.

[kdzbear]

I just started reading your ptr. What a sweet, cheerful boy Tyler looks like! I saw you were working on curriculum for VBS. How did it all come together? Our VBS is in a week and I still need to finish typing out the preschool curriculum. I have it all on paper, but it's in my crazy shorthand, so no one else would understand it! This summer is going so fast! I hope your VBS was great.

Our VBS went great. I would be glad to send you the curriculum I wrote. Just send me a PM if interested. We had 41 kids ages 3-5 attend. Summer is going fast. We took Tyler to KC to see the geneticist and now he has several more doctors and tests, but we are waiting for appointments and results before posting more news. None of it is too serious. We did see the urologist last week and although the pediatrician could not find certain male parts, the urologist was able to and explained that until puberty they tend to float up and down. I think that was more that I needed to know! Thank goodness my other two children are girls! :wizard:

[MomTo4+more]

Glad your VBS went well. That's a lot of little ones! That's about what we have for Cubbies with Awana during the year. We are limiting our preschool portion of VBS to 5 kids per adult, so right now we are capped at 20. If I were not nearly finished writing our curriculum, I would ask to see yours. Since we are in the city, ours is all about the Loop - downtown Chicago. Along with the story each day we have a Chicago destination as part of the theme. We are even building a dinosaur outside of the auditorium to be the Field Museum!

I hope all your medical appointments help to bring things together and give you answers. I hope all the tests go smoothly.

[kdzbear]

I received a call two nights ago and there is now a volunteer in charge of Tyler’s Dream. She is a grandmother in KC. She is familiar with Disney, but she does not know who Stitch is. I tried explaining, but I am not sure I helped. She said that she was renting us a sedan. I am a little worried about fitting five people, suitcases and a double stroller in a sedan, but we will see. Now the head of Dream Factory had told me that she had reserved a condo for us starting Nov. 21st, but our volunteer asked me for dates? I think there is a huge communication problem. I am just not going to plan anything for his Dream trip and what happens happens. I am going to focus on our family trip in September and make that trip amazing for the whole family.

Everything is finally confirmed for our September trip. I have airline tickets and MNSSHP party tickets. It will be here so quick.

Then we sold our house and purchased a new one. If there are no glitches we close on both on Aug. 10th. I am now trying to pack. Who knew you could accumulate so much stuff with three kids over nine years!

As for Tyler and his health, it is a can of worms. We drove to KC last weekend, which was a nice short 6 hour round trip drive, to have his blood drawn. I am not sure when I will hear back on that. His swallow and feeding tests are scheduled at the local hospital this coming Tuesday. He has an appointment with the developmental specialist on Dec. 1st, which is great since she normally has a one year wait for appointments. We are still struggling with the bar being back on his AFOs at night. Last night we finally turned them back straight instead of turned out and he made it through the night with them on. We are going to gradually turn the feet parts out until they are where they need to be and hope that this works. This development occurred after two weeks of screaming for two hours every night when he did not want to have them on since they hurt so badly. I think we have made a break through! Since we are moving, it also means that Tyler will go to a new school this fall. It is a core magnet school that our new house puts us in the area for it so this will be a good change!

I think that is all of the updates for right now. I guess I should go back to packing moving boxes. I will be on more after we move! :wizard:

[Corrine 1973]

I am so glad that everything is going so well for your September trip. Hopefully the communication for the wish trip falls into line soon.

I am so excited about MNSSHP. Your tickets are for the 15th, right?

MaW has ours, but we definatly have tickets for that night. We definatly need to plan a Dismeet. Maybe dinner? Or the kids can do some trick or treating together?

[StefaniLyn]

I received a call two nights ago and there is now a volunteer in charge of Tyler’s Dream. She is a grandmother in KC. She is familiar with Disney, but she does not know who Stitch is. I tried explaining, but I am not sure I helped. She said that she was renting us a sedan. I am a little worried about fitting five people, suitcases and a double stroller in a sedan, but we will see. Now the head of Dream Factory had told me that she had reserved a condo for us starting Nov. 21st, but our volunteer asked me for dates? I think there is a huge communication problem. I am just not going to plan anything for his Dream trip and what happens happens. I am going to focus on our family trip in September and make that trip amazing for the whole family.

Everything is finally confirmed for our September trip. I have airline tickets and MNSSHP party tickets. It will be here so quick.

Then we sold our house and purchased a new one. If there are no glitches we close on both on Aug. 10th. I am now trying to pack. Who knew you could accumulate so much stuff with three kids over nine years!

As for Tyler and his health, it is a can of worms. We drove to KC last weekend, which was a nice short 6 hour round trip drive, to have his blood drawn. I am not sure when I will hear back on that. His swallow and feeding tests are scheduled at the local hospital this coming Tuesday. He has an appointment with the developmental specialist on Dec. 1st, which is great since she normally has a one year wait for appointments. We are still struggling with the bar being back on his AFOs at night. Last night we finally turned them back straight instead of turned out and he made it through the night with them on. We are going to gradually turn the feet parts out until they are where they need to be and hope that this works. This development occurred after two weeks of screaming for two hours every night when he did not want to have them on since they hurt so badly. I think we have made a break through! Since we are moving, it also means that Tyler will go to a new school this fall. It is a core magnet school that our new house puts us in the area for it so this will be a good change!

I think that is all of the updates for right now. I guess I should go back to packing moving boxes. I will be on more after we move! :wizard:

She doesn't know who Stitch is?!?!? :scared1: Sorry you're struggling to find out details about your Wish Trip. I hope they get things straightened out soon. Did you let your Wish Granter know that you'd prefer a minivan to a sedan? Otherwise you could ask for an upgrade at the counter when you pick it up. You may get a sympathy upgrade if you mention you're on a Wish Trip - doesn't hurt to ask.

I hope Tyler continues to tolerate the bar in his AFO's. I understand your frustration with what seems like backwards progress in his medical treatment. We're going through much of the same right now. It's exceptionally frustrating to reach a milestone only to have it taken away. Stay strong and continue to do what you know is in Tyler's best interest.

Best wishes on your move! I hope it goes smoothly for you!

[kdzbear]

I am so glad that everything is going so well for your September trip. Hopefully the communication for the wish trip falls into line soon.

I am so excited about MNSSHP. Your tickets are for the 15th, right?

MaW has ours, but we definatly have tickets for that night. We definatly need to plan a Dismeet. Maybe dinner? Or the kids can do some trick or treating together?

Yes, we are going on the 15th. We have reservations at the Crystal Palace that night since Pooh and friends dress up in their Halloween costumes during dinner. I thought it would be fun for the kids to be dressed up and have the characters dressed up too! We definitely need to meet up that night. I will pm you after the move and we will arrange for details! :wizard:

[Corrine 1973]

Yes, we are going on the 15th. We have reservations at the Crystal Palace that night since Pooh and friends dress up in their Halloween costumes during dinner. I thought it would be fun for the kids to be dressed up and have the characters dressed up too! We definitely need to meet up that night. I will pm you after the move and we will arrange for details! :wizard:

Can't wait.

[kdzbear]

I am still in the middle of packing up our house to move next Sunday and my in-laws 40th Anniversary party was last night. While all of this is going on our wish coordinator calls me. She asks me if we would be willing to drive three hours to fly out of Kansas City. I told her that if that was the only option we would. She said that prices from where we live were too high. So when I got home I looked up flights and prices and they were around $200 round trip. They had never heard of Air Tran. So, then they agree that we can fly out of here. Then she tells me the exact dates of our trip. We are supposed to leave on Saturday, Nov. 21st and return on Thursday, Nov. 26th. This is Thanksgiving Day! I told her that I would rather not travel on Thanksgiving. She said that she would have to do some checking. No, the only option is to fly home on Thanksgiving Day. So, we would only have 4 days in Orlando since 2 days are travel days for the whole entire day. The other option is to return on Wednesday and only spend 3 days in Orlando. I am so torn right now. I don’t know if we should politely bow out of his wish or just go on the trip. Nothing has gone right so far and I am just so confused. I know that Tyler would have fun, but I am just not sure it is worth trying to take three kids and all of their stuff on airplanes for a four day trip. I am not trying to sound ungrateful. I just do not know what to do and my husband will not help with the decision. Please tell me what you would do. Thanks!

[5dwarves]

I am still in the middle of packing up our house to move next Sunday and my in-laws 40th Anniversary party was last night. While all of this is going on our wish coordinator calls me. She asks me if we would be willing to drive three hours to fly out of Kansas City. I told her that if that was the only option we would. She said that prices from where we live were too high. So when I got home I looked up flights and prices and they were around $200 round trip. They had never heard of Air Tran. So, then they agree that we can fly out of here. Then she tells me the exact dates of our trip. We are supposed to leave on Saturday, Nov. 21st and return on Thursday, Nov. 26th. This is Thanksgiving Day! I told her that I would rather not travel on Thanksgiving. She said that she would have to do some checking. No, the only option is to fly home on Thanksgiving Day. So, we would only have 4 days in Orlando since 2 days are travel days for the whole entire day. The other option is to return on Wednesday and only spend 3 days in Orlando. I am so torn right now. I don’t know if we should politely bow out of his wish or just go on the trip. Nothing has gone right so far and I am just so confused. I know that Tyler would have fun, but I am just not sure it is worth trying to take three kids and all of their stuff on airplanes for a four day trip. I am not trying to sound ungrateful. I just do not know what to do and my husband will not help with the decision. Please tell me what you would do. Thanks!

I'm sorry you are having such trouble. Why don't you see if your wish agency will delay a month or two. I think that there is always a lot available in Orlando in January. Maybe waiting a month or two would ease everyone's stress.

[kdzbear]

Dreams come true with Disney Magic! I received an unbelievable phone call tonight from my son’s WISH coordinator. I had proposed a few weeks back that they could use the pin code I was given and we could stay on Disney property and get free dining. I explained that I assumed that they provided us with some $$$ for food and that they rented us a car that they could save that money as we would not need either of those. I knew that they were trying to save money. Then I gave them the price to stay at an All Star Resort with the free dining and explained that they could save the food money and we would not need a car. I was told that the condo in Orlando was reserved and the dates were firm so we would return on Thanksgiving and that staying on Disney property was not an option. I was so stressed with the upcoming move that I replied that whatever they selected for Tyler would be fine. Then I have just spent the past two days moving to our new home.

Tonight on my way home from dinner at my in-laws after moving boxes all day Tyler’s coordinator called. I almost dropped the phone with what she said next. We will leave November 20th (a day earlier) and return November 25th (the day before Thanksgiving). We will fly out of our hometown. We will be staying at All Star Sports with FREE dining! I almost dropped the phone again! Tyler will get the perfect Wish/Dream. I guess Dreams really do come true! This will make Tyler have the best trip as he was only interested in Disney anyway since he is so little. I guess I will need to make dining reservations next week. I will definitely schedule breakfast with Lilo and Stitch since he loves Stitch and his whole wish is about Stitch. I just have no words. After going round and round and giving in, this amazing news came in! My son will spend a magical five days at Disney at All Star Sports resort. He loves Sports! I am just in awe and disbelief! :woohoo::yay::cheer2:

[StefaniLyn]

Dreams come true with Disney Magic! I received an unbelievable phone call tonight from my son’s WISH coordinator. I had proposed a few weeks back that they could use the pin code I was given and we could stay on Disney property and get free dining. I explained that I assumed that they provided us with some $$$ for food and that they rented us a car that they could save that money as we would not need either of those. I knew that they were trying to save money. Then I gave them the price to stay at an All Star Resort with the free dining and explained that they could save the food money and we would not need a car. I was told that the condo in Orlando was reserved and the dates were firm so we would return on Thanksgiving and that staying on Disney property was not an option. I was so stressed with the upcoming move that I replied that whatever they selected for Tyler would be fine. Then I have just spent the past two days moving to our new home.

Tonight on my way home from dinner at my in-laws after moving boxes all day Tyler’s coordinator called. I almost dropped the phone with what she said next. We will leave November 20th (a day earlier) and return November 25th (the day before Thanksgiving). We will fly out of our hometown. We will be staying at All Star Sports with FREE dining! I almost dropped the phone again! Tyler will get the perfect Wish/Dream. I guess Dreams really do come true! This will make Tyler have the best trip as he was only interested in Disney anyway since he is so little. I guess I will need to make dining reservations next week. I will definitely schedule breakfast with Lilo and Stitch since he loves Stitch and his whole wish is about Stitch. I just have no words. After going round and round and giving in, this amazing news came in! My son will spend a magical five days at Disney at All Star Sports resort. He loves Sports! I am just in awe and disbelief! :woohoo::yay::cheer2:

So happy to hear everything is turning around for all of you. :thumbsup2 Free dining AND staying on site - AWESOME! :woohoo: And WOW to getting tfly out of your local airport! So much better than a long car trip before a your flight - and now you have more MAGIC time! :banana::banana::banana:

[Corrine 1973]

Dreams come true with Disney Magic! I received an unbelievable phone call tonight from my son’s WISH coordinator. I had proposed a few weeks back that they could use the pin code I was given and we could stay on Disney property and get free dining. I explained that I assumed that they provided us with some $$$ for food and that they rented us a car that they could save that money as we would not need either of those. I knew that they were trying to save money. Then I gave them the price to stay at an All Star Resort with the free dining and explained that they could save the food money and we would not need a car. I was told that the condo in Orlando was reserved and the dates were firm so we would return on Thanksgiving and that staying on Disney property was not an option. I was so stressed with the upcoming move that I replied that whatever they selected for Tyler would be fine. Then I have just spent the past two days moving to our new home.

Tonight on my way home from dinner at my in-laws after moving boxes all day Tyler’s coordinator called. I almost dropped the phone with what she said next. We will leave November 20th (a day earlier) and return November 25th (the day before Thanksgiving). We will fly out of our hometown. We will be staying at All Star Sports with FREE dining! I almost dropped the phone again! Tyler will get the perfect Wish/Dream. I guess Dreams really do come true! This will make Tyler have the best trip as he was only interested in Disney anyway since he is so little. I guess I will need to make dining reservations next week. I will definitely schedule breakfast with Lilo and Stitch since he loves Stitch and his whole wish is about Stitch. I just have no words. After going round and round and giving in, this amazing news came in! My son will spend a magical five days at Disney at All Star Sports resort. He loves Sports! I am just in awe and disbelief! :woohoo::yay::cheer2:

Yeah!!!!!!! Disney Magic strikes again!!!!

Can't wait to meet you guys next month!!!

[5dwarves]

So glad to hear that Tyler's Wish trip is going to be exactly what you and he wanted! We are looking forward to hearing about all your plans.

E

[MomTo4+more]

That is excellent! I am very happy for you. My daughter is thinking your wish trip sounds like a dream - she is a huge Stitch fan! You got the info just in time to start making ADRs! Have fun planning!

[kdzbear]

I have more good news to share! It is about Tyler's new school. We had met the special ed teacher during registration. Then last night at meet the teacher's night we met his teacher. She has a special needs son that has issues very similar to Tyler's. I did not ask what his diagnosis was. However, I asked if he could wear Crocs to school since even though it is a public school, the students wear uniforms. Her reply made me want to hug her. She said that Crocs were fine and they dumped the sand out of everyone's shoes when they came in from recess. She said this without prompting! It will be so nice to have Tyler not tiptoeing off of the bus due to his feet hurting so bad due to all of the sand in his shoes. It will also be nice to have a teacher that knows exactly where Tyler is coming from since her son is only a year older than him. He is in the right place and it was just by a prayer being answered that he is in this school. We had tried to move him to Rainbows, our local special needs agency and last week they declared bankruptcy so we are glad now that he did not get placed there. Then we could not find a new house close to our other one. This house is about 6 miles from the old one, but it puts us in a different school for Tyler. It is a magnet school that is difficult to get into if you don't live in the right area, but we live in the right area so he is automatically in. I am so happy! Then he met the speech therapist and she sat down on the floor with him and blew bubbles with him and they hit it off right away. She already knew who Tyler was and had read his file! He is going to do so well here! I just had to share my excitement! :banana:

[Terry718]

Hi there!! I just read thru your PTR and I wanted to tell you I'm glad things are looking up for you guys! I'm so happy Tyler's wish trip is working out - I must admit I was a little frustrated by your earlier posts - your little boy deserves the very best and I'm thrilled he's going to get it!

I also know alot about special needs schools as my four year old daughter (not my wish child) has severe autism and we have been thru it all trying to find the right therapists and the right school for her. I can't describe the elation felt when it all starts to fit and you finally feel you are in the right place with the right people. It is such a relief.

I look forward to reading more good news!

[StefaniLyn]

I have more good news to share! It is about Tyler's new school. We had met the special ed teacher during registration. Then last night at meet the teacher's night we met his teacher. She has a special needs son that has issues very similar to Tyler's. I did not ask what his diagnosis was. However, I asked if he could wear Crocs to school since even though it is a public school, the students wear uniforms. Her reply made me want to hug her. She said that Crocs were fine and they dumped the sand out of everyone's shoes when they came in from recess. She said this without prompting! It will be so nice to have Tyler not tiptoeing off of the bus due to his feet hurting so bad due to all of the sand in his shoes. It will also be nice to have a teacher that knows exactly where Tyler is coming from since her son is only a year older than him. He is in the right place and it was just by a prayer being answered that he is in this school. We had tried to move him to Rainbows, our local special needs agency and last week they declared bankruptcy so we are glad now that he did not get placed there. Then we could not find a new house close to our other one. This house is about 6 miles from the old one, but it puts us in a different school for Tyler. It is a magnet school that is difficult to get into if you don't live in the right area, but we live in the right area so he is automatically in. I am so happy! Then he met the speech therapist and she sat down on the floor with him and blew bubbles with him and they hit it off right away. She already knew who Tyler was and had read his file! He is going to do so well here! I just had to share my excitement! :banana:

How wonderful that Tyler's school is so accommodating and compassionate. I'm glad everything has fallen into place for then next school year. He's going to have an awesome year!

[maroo]

I have more good news to share! It is about Tyler's new school. We had met the special ed teacher during registration. Then last night at meet the teacher's night we met his teacher. She has a special needs son that has issues very similar to Tyler's. I did not ask what his diagnosis was. However, I asked if he could wear Crocs to school since even though it is a public school, the students wear uniforms. Her reply made me want to hug her. She said that Crocs were fine and they dumped the sand out of everyone's shoes when they came in from recess. She said this without prompting! It will be so nice to have Tyler not tiptoeing off of the bus due to his feet hurting so bad due to all of the sand in his shoes. It will also be nice to have a teacher that knows exactly where Tyler is coming from since her son is only a year older than him. He is in the right place and it was just by a prayer being answered that he is in this school. We had tried to move him to Rainbows, our local special needs agency and last week they declared bankruptcy so we are glad now that he did not get placed there. Then we could not find a new house close to our other one. This house is about 6 miles from the old one, but it puts us in a different school for Tyler. It is a magnet school that is difficult to get into if you don't live in the right area, but we live in the right area so he is automatically in. I am so happy! Then he met the speech therapist and she sat down on the floor with him and blew bubbles with him and they hit it off right away. She already knew who Tyler was and had read his file! He is going to do so well here! I just had to share my excitement! :banana:

Aw. This made me cry! I am so, so excited for you guys. School being just right is a HUGE blessing! I am so thankful for you guys. I know he will have a great year!

I have finally updated your info on the Wish Trippers thread! And am finally getting caught up on all of my pre-trippies!!! :)

[kdzbear]

First Day of School
http://i208.photobucket.com/albums/bb1/kdzarchan/School%202009/FirstDayof4yearoldpreschool2009.jpg

Second Day of School
http://i208.photobucket.com/albums/bb1/kdzarchan/School%202009/SecondDayof4yearoldpreschool2009.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/School%202009/SecondDayof4yearoldpreschoolbus2009.jpg

After a minor mix up with where the bus was supposed to pick Tyler up, he went off to his first day of pre-K on Monday. On Monday and Tuesday the teacher said he used the potty! This is amazing. We have spent hours sitting on the potty, but he has never gone for me. He seems to really like his new school! I am so happy. Hayley just woke up so I will update our Disney plans in a little bit.

[kdzbear]

I will tell you where we are dining in November in just a minute. However, first you need to see where we are dining in September to understand Tyler’s November choices.

Sat. 9/12 - Whispering Canyon for dinner – My husband ate here on a business trip, but we have never tried it. I thought it would be fun for the kids.

Sun. 9/13 - Cinderella's Royal Table – lunch – We are doing lunch so they can see all of the princesses. At dinner only Fairy Godmother and Cinderella are present. This meal is a surprise for my kids so I need to keep Breanna away from this report for a little over 2 weeks!

Mon. 9/14 - Kona – Dinner - My husband also ate here on a business trip, but the rest of us have never tried it. I am looking forward to this one.

Tues. 9/15- Crystal Palace – Dinner – This meal is before MNSSHP so the characters should be in their Halloween costumes if they follow previous year’s precedents. I think it will be fun to have the kids and the characters dressed up for Halloween.

Wed. 9/16 – No meal plans. It is a late night for Animal Kingdom so we might have a late dinner at Rainforest after this park closes at 8 pm (7 pm back home). I have My Points gift cards for Rainforest.

Thurs. 9/17 - Boma – dinner – We have eaten here three times before and it is one of our favorite buffets! I cannot wait for the Zebra Domes!

Fri. 9/18 - Chef Mickey's – breakfast – Need I say anything? This place is awesome and by Friday the kids should not be scared of characters anymore!

Sat. 9/19 - Le Cellier – Dinner – This restaurant is now one of our favorites since my friend introduced me to it on a Moms Only trip in 2006.
Now for Tyler’s Wish Trip: Tyler sat down with me at the computer and looked at each restaurant on Disney’s site and picked where he wanted to eat.

Friday - Garden Grill – Tyler wants to eat with Chip and Dale. We have never eaten here. I also thought it would be easy to get from Epcot to the Magic Kingdom for MVMCP. I do not have tickets yet, but I hope to purchase some soon. I am afraid to ask our Wish volunteer for the plane times. I have an idea, but not concrete times. At one point in the planning I was asked to book the tickets and then they would reimburse us, but the messages got crossed with us moving to the new home and then their travel planner returned from her vacation and took care of it.

Sat - Yak and Yeti at 4:30 – Tyler did not pick this one. I did, but I thought it would be fun for him to see the Animal Kingdom with no one in it after dinner so I purposely booked this time with the park closing at 5 pm.

Sunday - Lilo and Stitch Breakfast at the Polynesian – Tyler’s whole Wish is based around Stitch so he wants to eat breakfast with him!

Monday - DS Sci-Fi – Tyler saw the cars that you dine in and wanted to try this restaurant. My husband and I ate here about 11 years ago and we were not impressed, but things can change so we will give it a try for Tyler.

Tues. - Coral Reef – Tyler wants to eat with the fish. Our family does not eat fish so we will see what the menu of non-fish is like. Everyone has told me that you have to take Wish kids to this restaurant. We have never eaten here either.

Wed. - Crystal Palace – Now either this meal or one of the other less expensive meals will be an out of pocket meal since we only have 5 dining credits and six meals booked. This meal is at a time before the Magic Kingdom opens so Tyler can see the empty park on his last day of his trip. He also loves Tigger and sleeps with a giant Tigger in his bed along with an even bigger Pooh Bear.

That is it for our meal selections. The Dream Factory only purchased single day tickets for us and it would be $200 to upgrade them to park hoppers so it was hard to try to figure out which day we would like to do which park this far in advance. I am sure it will all work out. Then we are also staying at All Star Sports and Tyler is an amazing athlete so he will love all of the giant sports icons here. The last time we were at Disney was in 2007. Tyler was two and we stayed at All Star Sports, but I don’t think he remembers it. Well that is as far as I have planned so far. I still need to make autograph books and Epcot passports for our September trip. I found the ones I like on the design section of this website, but I have not been brave enough to try to print and assemble them yet.
:cheer2:

[kdzbear]

We are back home from our family trip, but the three little ones are sick. I took Hayley to the minor emergency yesterday and she has bronchitis and an ear infection. I was originally going for a headache that I could not get rid of. It got so bad yesterday that I could not keep food in my stomach. I got a shot and some medication and feel much better today. Hayley's temperature is gone and the antibiotics are starting to work! Bre and Tyler are healing on their own.

I started our trip report from our family trip today. Here is the link:
http://www.disboards.com/showthread.php?p=33700264#post33700264

Enjoy!:wizard:

[kdzbear]

I have more exciting news. Our family has been chosen for the Big Give!

Positive Vibes for Tyler's Dream Trip:

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC02310.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC02311.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC02312.jpg

By the middle of our September trip, Tyler was back to loving Stitch! :stitch:

[HeatherSue]

I have more exciting news. Our family has been chosen for the Big Give!

http://i208.photobucket.com/albums/bb1/kdzarchan/th_DSC02312.jpg

By the middle of our September trip, Tyler was back to loving Stitch! :stitch:

Really? I had no idea! :thumbsup2

I love the Stitch pictures! Stitch always cracks me up in the parks!

[kdzbear]

Really? I had no idea! :thumbsup2

I love the Stitch pictures! Stitch always cracks me up in the parks!

You can't tell, but in the middle picture Stitch and Tyler were holding hands and just jumping up and down. They were having so much fun doing this. We found him near the entrance to Epcot and I guess no one saw him there. A little further up closer to Spaceship Earth there was a huge line for Daisy Duck. Tyler just got to play with Stitch for about 5 minutes uninterrupted.

Heather Sue, I hope you and your family have a wonderful upcoming trip! :wizard:

[Matt1026]

Oh the BIG GIVE!! How exciting!!! That was one of the highlights of our Wish Trip. It was an amazing time!! The gift were incredible!! I know that you will enjoy it!

[Wonders10]

Hi there,

I saw one of your responses on another thread I was reading and noticed we will be in WDW around the same time so I just had to take a peek at your trippie. And now I am hooked! I can't wait to see how Tyler's trip goes. And I am thrilled that you were able to stay on Disney property. That just makes any trip more magical, IMO. I am actually a speech pathologist which also drew me into your trip report. Last year I worked at a "separate day school" (basically a school for children with specials needs that are too severe to be in a typical school) and many of the children on my caseload were nonverbal, very little verbal expression, wheelchair bound or receiving PT and OT. This year I was placed in an elementary school with more typical students, but I am also working in the school's 3 autistic classrooms.

Friday - Garden Grill – Tyler wants to eat with Chip and Dale. We have never eaten here. I also thought it would be easy to get from Epcot to the Magic Kingdom for MVMCP. I do not have tickets yet, but I hope to purchase some soon. I am afraid to ask our Wish volunteer for the plane times. I have an idea, but not concrete times. At one point in the planning I was asked to book the tickets and then they would reimburse us, but the messages got crossed with us moving to the new home and then their travel planner returned from her vacation and took care of it.

Sat - Yak and Yeti at 4:30 – Tyler did not pick this one. I did, but I thought it would be fun for him to see the Animal Kingdom with no one in it after dinner so I purposely booked this time with the park closing at 5 pm.

Sunday - Lilo and Stitch Breakfast at the Polynesian – Tyler’s whole Wish is based around Stitch so he wants to eat breakfast with him!

Monday - DS Sci-Fi – Tyler saw the cars that you dine in and wanted to try this restaurant. My husband and I ate here about 11 years ago and we were not impressed, but things can change so we will give it a try for Tyler.

Tues. - Coral Reef – Tyler wants to eat with the fish. Our family does not eat fish so we will see what the menu of non-fish is like. Everyone has told me that you have to take Wish kids to this restaurant. We have never eaten here either.

Wed. - Crystal Palace – Now either this meal or one of the other less expensive meals will be an out of pocket meal since we only have 5 dining credits and six meals booked. This meal is at a time before the Magic Kingdom opens so Tyler can see the empty park on his last day of his trip. He also loves Tigger and sleeps with a giant Tigger in his bed along with an even bigger Pooh Bear.
:cheer2:

Just wanted to post some thoughts on your restaurant choices (the ones I've been to anyway).
Garden Grill - definitely liked it. The character interaction was great, food was good and it was really neat to "spin around" the Land
Coral Reef - Haven't eaten here in a few years, but when I did it was really good. I had the blackened catfish (yum!), but they definitely have non-seafood dishes.
Poly b-fast - another fun breakfast and the food is good too. Plus I just love the Poly

Looking forward to hearing about the rest of your planning adventures...plus how the actual trip turns out!

P.S. What is the "Big Give" (for those, like me, that aren't in the know)?

[kdzbear]

Hi there,

I saw one of your responses on another thread I was reading and noticed we will be in WDW around the same time so I just had to take a peek at your trippie. And now I am hooked! I can't wait to see how Tyler's trip goes. And I am thrilled that you were able to stay on Disney property. That just makes any trip more magical, IMO. I am actually a speech pathologist which also drew me into your trip report. Last year I worked at a "separate day school" (basically a school for children with specials needs that are too severe to be in a typical school) and many of the children on my caseload were nonverbal, very little verbal expression, wheelchair bound or receiving PT and OT. This year I was placed in an elementary school with more typical students, but I am also working in the school's 3 autistic classrooms.


Yeah! Welcome! What are your Disney dates? We are so excited to stay on Disney property. We just stayed at Pop Century in Sept. for a family trip that we planned last January before Tyler's Wish was approved and when his Wish was approved we decided to keep both trips. We thought that for his Wish Trip we would have 2 days at Universal, 1 day at Sea World and three days at Disney just based on other Wish Trippers reports, but it did not work out that way. Staying on property and only going to Disney fits Tyler's age and interests better since Tyler loves Disney! Tyler receives speech therapy right now and this fall he has started to talk a little more. He is probably up to a 2 year old level right now, but he can sign over 400 words. He also receives physical therapy. We just picked up his new braces today. The ones with the bar between them did not work at all and no one was sleeping due to his screaming while wearing them. His left foot now turns in at a 90 degree angle again. I hope that we can correct this quickly.

Just wanted to post some thoughts on your restaurant choices (the ones I've been to anyway).
Garden Grill - definitely liked it. The character interaction was great, food was good and it was really neat to "spin around" the Land
Coral Reef - Haven't eaten here in a few years, but when I did it was really good. I had the blackened catfish (yum!), but they definitely have non-seafood dishes.
Poly b-fast - another fun breakfast and the food is good too. Plus I just love the Poly

Thank you for the restaurant advice. Tyler and I sat at the computer one day and he picked all of this restaurants so I hope he likes what he picked.
Looking forward to hearing about the rest of your planning adventures...plus how the actual trip turns out!

P.S. What is the "Big Give" (for those, like me, that aren't in the know)?

As for the Big Give, there is a community within Disboards called Big Give. It is made up of mostly Disboutiquers. Theses wonderful men and women make custom clothing or provide small gifts for Wish families going on their Wish trips. There is a whole Wish Trips section to Disboards: http://www.disboards.com/showthread.php?t=2039777 I am sure I did not describe it well enough. If you go to another Wish Trippers pre-trip report for someone that has already gone on their trip you can see some of the amazing clothing items that have been given. These people just do this out of the goodness of their hearts. We are blessed to have been chosen.:wizard:

[kdzbear]

After being persistent and a pain, I have our flight information from our volunteer.

Leave home at 05:40 on Nov.20,2009 and get to Orlando at ll:00 AM Nov 20, 2009. You come back at 4:30PM to home at 08:00PM. Disney World is suppose to be mailing all pertinent information to you. - From his volunteer

Then I guess that we will not meet her either. She asked if it would be ok if she mailed us all of this paperwork so she would not have to make the 5 hour round trip to bring it to us. We would have met her half way. I guess we were not meant to meet her. I guess I am just a little disappointed. :confused3

However, once I come up with the money I now know that we will be able to make it to the MVMCP. Now I just need to save enough money to purchase the tickets. I have half of it so far! I can't wait to surprise the kids with the tickets!:banana:

[kdzbear]

I am back. I have been working on my September trip report for the past three weeks and it is done except for the Photopass photos. I just realized that we leave in 35 days! :cheer2:

Here is the plan so far:

Friday, Nov. 20th – Arrive at about 11 am at the airport. Arrive at the resort by 1 pm? Then rest or head to Epcot – Dinner at Garden Grill at 4:15 pm – Then after dinner head to MVMCP? Has anyone ever been to this? I am still going to wait a few more weeks before purchasing tickets. I hope it does not sell out. :santa:

Saturday, Nov. 21st – Spend the day at Animal Kingdom – Dinner at the Yak and Yeti at 4:45 pm – see AK after closing on the way out after dinner
Then I thought that from AK we would go to the Beach Club resort and check out the gingerbread carousel if it is up and finished – Then head to Downtown Disney for some shopping

Sunday, Nov. 22nd – 8:20 AM - Lilo and Stitch breakfast at the Polynesian. Then we will spend the day at the Magic Kingdom and probably go back to the resort for a nap in the middle of the day. Tonight the Magic Kingdom is open until 11 PM for resort guests.

Monday, Nov. 23rd – Spend the day at Disney’s Hollywood Studios. We have dinner reservations at 8:25 PM at the Sci-Fi and this park is open until 10 PM for resort guests. It closes at 7 PM for everyone else. I may try to get an earlier dinner reservation, but it will only be 7:25 PM in our time zone so the kids should be ok.

Tuesday, Nov. 24th – Spend the day at Epcot. It opens one hour early for resort guests. We have dinner reservations at 5:35 PM at the Coral Reef. This park closes at 9 PM.

Wednesday, Nov. 25th – Breakfast at the Crystal Palace at 8:10 AM. The park does not open until 9 AM today so the kids will get to see a nearly empty park. Then we will spend our last few hours here. I assume we will need to be back at the resort around 1:40 to take the ME back to the airport to catch our 4:30 PM flight.

I know that some of these days are probably days to avoid according to crowd calendars, but we only have single day tickets, which means we do not have park hoppers. We have never not had park hoppers so this will be a challenge to adapt to.

We have never been to Disney during a busy season or the holiday season so any advice is welcome. Also, we found out the Osborne Lights will go on on Nov. 11th this year so we will get to see them! I am very excited about this. Tyler sat on my lap and watched the 10 minute video of them on this site without moving. I think he will really like them too! :woohoo:

[p00h4me]

I've been following your trip report and Tyler's Wish Trip report.

We prefer to go to WDW during Christmas time. It's cooler and less crowded.

Since this is your family's first time going to WDW during Christmas, get the MVMCP tickets and enjoy all the special shows, parades and the park with all the Christmas lights and decorations.

Can't wait to see your pictures from Tyler's Wish Trip! It won't be long now.:woohoo:

[kdzbear]

I've been following your trip report and Tyler's Wish Trip report.

We prefer to go to WDW during Christmas time. It's cooler and less crowded.

Since this is your family's first time going to WDW during Christmas, get the MVMCP tickets and enjoy all the special shows, parades and the park with all the Christmas lights and decorations.

Can't wait to see your pictures from Tyler's Wish Trip! It won't be long now.:woohoo:

Welcome! I am glad you are following along. We finished our Countdown Mickeys! This time we glued two HD Mickey heads together so there was a front and back since last time we could not keep them all facing forward. Hayley wanted to be in the picture too!

http://i208.photobucket.com/albums/bb1/kdzarchan/Tyler%20Wish%20Trip%2011_2009/DSC03079.jpg

[Wonders10]

I could be wrong but I believe the carousel is at the boardwalk, not BC.

I've done mvmcp before and my friend and I are doing it again for this trip. Definitely do it if you can. Also the Osborne lights are awesome!

[misskate]

Your PRT has made my day! I know that might sound a little weird, but I am so thankful that you and your beautiful family get to have this wish granted. I'm praying that your wish coordinator turns her attitude around. I can already feel the magic in the air for Tyler! :) :hug:

[kdzbear]

I could be wrong but I believe the carousel is at the boardwalk, not BC.

I've done mvmcp before and my friend and I are doing it again for this trip. Definitely do it if you can. Also the Osborne lights are awesome!

Thank you for the advice! I read on these boards that it was at the Beach Club and that the Boardwalk's decorations weren't that amazing. I forgot to put that we plan to walk from the Beach Club to the Boardwalk to look around prior to going to DTD. We stayed with a cast member friend at the Boardwalk when Breanna was 2 1/2 and I fell in love with that resort, but it does not fit in our financial situation. The kids love the All Star Resorts so it works out anyway!

Your PRT has made my day! I know that might sound a little weird, but I am so thankful that you and your beautiful family get to have this wish granted. I'm praying that your wish coordinator turns her attitude around. I can already feel the magic in the air for Tyler! :) :hug: Welcome! I understand. I love to read about these amazing and special kids on this site. In college I volunteered at the blind preschool here in town and those kids were amazing and inspiring. They all had many additional medical challenges in addition to being blind, but they were the happiest kids you would ever meet. They did not see their disability as a challenge and they just loved life! As for our Wish coordinator, she has never met Tyler. I have sent her a picture of him. She does not know who Stitch is so I have not figured out how I am going to explain to Tyler that Stitch won't be able to ride the Dumbos with him. I guess maybe I could tell him that Stitch is sick? I will worry about that later. He is very excited right now. He looks at the pictures from our September trip and says, "I wanna go" and points to the pictures. I am hoping that since he went recently we won't have all of the screaming tantrums we had in September and he will just have fun!

[pipersmom]

Welcome! I understand. I love to read about these amazing and special kids on this site. In college I volunteered at the blind preschool here in town and those kids were amazing and inspiring. They all had many additional medical challenges in addition to being blind, but they were the happiest kids you would ever meet. They did not see their disability as a challenge and they just loved life! As for our Wish coordinator, she has never met Tyler. I have sent her a picture of him. She does not know who Stitch is so I have not figured out how I am going to explain to Tyler that Stitch won't be able to ride the Dumbos with him. I guess maybe I could tell him that Stitch is sick? I will worry about that later. He is very excited right now. He looks at the pictures from our September trip and says, "I wanna go" and points to the pictures. I am hoping that since he went recently we won't have all of the screaming tantrums we had in September and he will just have fun![/QUOTE]

Hey :)
Sorry to hear that your wish granter is ermm..less than knowledgeable. Maybe the first morning you go to the park you could go to guest services and explain the situation? From reading some of the trip reports, stranger things have been made to happen :goodvibes

[chrissid7]

OMG you are so close now. I have loved reading your PTR and I also eally enjoyed the last one. Great Halloween pics! Your kids a re beautiful and I cant wait to hear the rest! :banana:

Im actually trying to get it together too so that i can get Alyssa to MVMCP, she desperatly wants to do it (we all do) but its not in the budget right now. I asked our coordinator if she had a connection that could maybe get them at a discounted rate but she had never even heard of MVMCP so no avail.
We are looking forward to the Osbourne family lights too! The video was incredible so I can only imagine!

Enjoy the rest of your planning. It looks great! :dance3:

[kdzbear]

Hey :)
Sorry to hear that your wish granter is ermm..less than knowledgeable. Maybe the first morning you go to the park you could go to guest services and explain the situation? From reading some of the trip reports, stranger things have been made to happen :goodvibes

I will figure something out. I have reservations at the Polynesian for the Lilo and Stitch breakfast one morning. I also had them put that it was my son's Wish trip on all of our dining reservations. When we went in Sept. it printed my daughter's birthday and our anniversary on every reservation slip and not just the actual day that we were celebrating! Maybe some magic will happen at breakfast and at least this way it ensures he will see Stitch! :stitch:

OMG you are so close now. I have loved reading your PTR and I also eally enjoyed the last one. Great Halloween pics! Your kids a re beautiful and I cant wait to hear the rest! :banana:

Im actually trying to get it together too so that i can get Alyssa to MVMCP, she desperatly wants to do it (we all do) but its not in the budget right now. I asked our coordinator if she had a connection that could maybe get them at a discounted rate but she had never even heard of MVMCP so no avail.
We are looking forward to the Osbourne family lights too! The video was incredible so I can only imagine!

Enjoy the rest of your planning. It looks great! :dance3:

Thank you for all of the compliments. I showed all three kids the Osbourne light video and I am so happy it is starting on Nov. 10th this year! :banana: I am a stay at home mom and I do some mystery shopping on the side, but lately most of my shops have been paying in reimbursements rather than cash. I am up to about $115 saved so I only need $85 more. Hopefully, in the next two weeks I can make that up. I think the kids would love it! I did mention it to our Wish granted and that is how I got our airline times and she said that I could purchase the tickets now that I know the times. I am just happy that we are staying on property with free dining. If they do anything else, it will just be icing on the cake! :santa:

[kdzbear]

More exciting news! I guess my husband thought we had park hoppers and I explained to him yesterday that they were single day tickets. Then he also wanted to know what I was saving for so I ended up telling him I really wanted to go to MVMCP and he said, "Ok. Order the tickets!" :banana: That was too easy! I am going to order them tomorrow! He has been to MNSSHP three times while the rest of us have only been twice. He went once on a business trip so he knows how special the parties are. He asked lots of questions about what you do and then agreed to it!!!!:woohoo:

Then I picked up the mail yesterday and our Magic Express tickets and bag tags were in the mail. It said that Disney did not have our flight information yet. I spent several hours on the phone last week trying to get a confirmation number so I could look up our flights online. Our Dream Volunteer had given me the airline name and the flight times only. Today when I called Delta the agent was so nice. When I looked online it appears that one of our flights had changed by one minute and it meant that most likely we would miss our connection. So she booked us on a flight that has about an hour between flights rather than 25 minutes. She also put a note on the changes that they were done due to Delta schedule changes so no one could try to charge us additional fees later. We will get to Orlando at 11:35 AM. She also gave me confirmation numbers for all of us! Also, both the baby and I were booked as infants on the original booking even though my birth date showed I was not so that was corrected in the system so we would not encounter any additional problems! After I hung up I realized that I probably just did the job of Dream Factory's travel coordinator, but I did not want any surprises when it came time to leave on our trip and all of the flights were full and we could not change. The problem has been averted and I have confirmation numbers for both the airlines and Disney now! Once I purchase our MVMCP tickets tomorrow it will feel even more real! I am so excited now! :yay:

[pipersmom]

More exciting news! I guess my husband thought we had park hoppers and I explained to him yesterday that they were single day tickets. Then he also wanted to know what I was saving for so I ended up telling him I really wanted to go to MVMCP and he said, "Ok. Order the tickets!" :banana: That was too easy! I am going to order them tomorrow! He has been to MNSSHP three times while the rest of us have only been twice. He went once on a business trip so he knows how special the parties are. He asked lots of questions about what you do and then agreed to it!!!!:woohoo:

Then I picked up the mail yesterday and our Magic Express tickets and bag tags were in the mail. It said that Disney did not have our flight information yet. I spent several hours on the phone last week trying to get a confirmation number so I could look up our flights online. Our Dream Volunteer had given me the airline name and the flight times only. Today when I called Delta the agent was so nice. When I looked online it appears that one of our flights had changed by one minute and it meant that most likely we would miss our connection. So she booked us on a flight that has about an hour between flights rather than 25 minutes. She also put a note on the changes that they were done due to Delta schedule changes so no one could try to charge us additional fees later. We will get to Orlando at 11:35 AM. She also gave me confirmation numbers for all of us! Also, both the baby and I were booked as infants on the original booking even though my birth date showed I was not so that was corrected in the system so we would not encounter any additional problems! After I hung up I realized that I probably just did the job of Dream Factory's travel coordinator, but I did not want any surprises when it came time to leave on our trip and all of the flights were full and we could not change. The problem has been averted and I have confirmation numbers for both the airlines and Disney now! Once I purchase our MVMCP tickets tomorrow it will feel even more real! I am so excited now! :yay:

That is exciting! I bet you feel a lot better having the confirm. numbers, I know I would. Woohoo :banana::banana::banana: for MVMCP!

[misskate]

Hey, sometimes it's best to take matters into your own hands! Now at least you have peace of mind knowing that the flight situation is entirely taken care of and everything is correct and ready to go. Good stuff! :)

Yay for MVMCP!! That's going to be a blast! Can't wait to hear the rest of the details along the way.

[maroo]

Don't feel bad (not that you are, but still) about taking things in your own hands.

It was me calling the actual airlines that alerted them all of the issues we were going to have trying to get Lauren to fly two legs of the Wish Flight. While the fanfare would have been great for her, they just could not accomodate her wheelchair and all of our plans were changed.

Sometimes they just don't know what questions to ask for your particular family situation. :) They assume that 25 min is plenty of time and don't consider what it takes to move a special needs child and an infant from one place to another.

So way to go!! :)

[kdzbear]

I can't stop shaking and crying happy tears. Hayley is sleeping and Tyler just keeps hugging me. His new case manager is amazing! The funding for diapers changed. You can now apply as soon as your child is 4 and you do not have to wait for January. We applied about a month ago. The case manager called back and had many new questions for me. I gave her my husband's work number. I was not sure of exact expense amounts for some things. He has been approved for diapers and wipes through June 2010! I just have to send in my receipts and they will reimburse me! I just can't believe that he was actually approved for this! This funding will help our budget so much with having two in diapers! We just spent $80 for two huge boxes of diapers the other night at Sam's Club. Now that knowing half of that is reimbursed is wonderful! I know I am rambling, but I had to share this with a group that would understand! :yay:

[chrissid7]

I can't stop shaking and crying happy tears. Hayley is sleeping and Tyler just keeps hugging me. His new case manager is amazing! The funding for diapers changed. You can now apply as soon as your child is 4 and you do not have to wait for January. We applied about a month ago. The case manager called back and had many new questions for me. I gave her my husband's work number. I was not sure of exact expense amounts for some things. He has been approved for diapers and wipes through June 2010! I just have to send in my receipts and they will reimburse me! I just can't believe that he was actually approved for this! This funding will help our budget so much with having two in diapers! We just spent $80 for two huge boxes of diapers the other night at Sam's Club. Now that knowing half of that is reimbursed is wonderful! I know I am rambling, but I had to share this with a group that would understand! :yay:

OMG thats amazing!!! I am soooo happy for you! I know how much every dime means when you have so many expenses. WTG and you deserve it! :woohoo:

[maroo]

I can't stop shaking and crying happy tears. Hayley is sleeping and Tyler just keeps hugging me. His new case manager is amazing! The funding for diapers changed. You can now apply as soon as your child is 4 and you do not have to wait for January. We applied about a month ago. The case manager called back and had many new questions for me. I gave her my husband's work number. I was not sure of exact expense amounts for some things. He has been approved for diapers and wipes through June 2010! I just have to send in my receipts and they will reimburse me! I just can't believe that he was actually approved for this! This funding will help our budget so much with having two in diapers! We just spent $80 for two huge boxes of diapers the other night at Sam's Club. Now that knowing half of that is reimbursed is wonderful! I know I am rambling, but I had to share this with a group that would understand! :yay:

Oh, that is GREAT news!!!! :thumbsup2

[kdzbear]

OMG thats amazing!!! I am soooo happy for you! I know how much every dime means when you have so many expenses. WTG and you deserve it! :woohoo:

Oh, that is GREAT news!!!! :thumbsup2

Thank you both! It is amazing news! :woohoo:


We are down to 30 days! :yay:

[kdzbear]

I have some more happy updates.

First we received our Disney Welcome packet today. There were 4 luggage tags. They are nice and thick with a picture of the castle and Mickey balloons! Then it came with paperwork for our stay. It has lots of the extras that I thought were exclusive to AAA. It has our ME transfers, 30 minute arcade voucher, miniature golf voucher, Planet Hollywood Merch. Voucher, Sea Raycer voucher, all of the meals included in our dining plan listed out and a pre-order card for Photopass. My husband and I are starting to discuss this now. It was so exciting! :banana:

Then I had Junior Girl Scouts from 3:20 pm – 5:00 pm today. We made ghost milk jug decorations for our upcoming Spooktacular. Then we did cooking experiments. We made cinnamon and sugar pita chips that we dipped in strawberry yogurt. We also made 3 minute chocolate microwave cakes. They fulfilled some of their badge requirements. They are so cute when they cook. Tyler and Hayley run around the meetings and “help” too. The only way I can be a leader is to bring them with me! :stitch: :tink:

Then I was looking over Breanna’s homework tonight and she brought home a lunch calendar for November. Her school is out the entire week of Thanksgiving. There is a conference for the teachers on the first two days of the week and then everyone is off the last three days. It also says that there is no school on the 20th! I emailed her principal to verify this, but if this change is true, then she will not have to miss any school for Tyler’s trip! :woohoo: :woohoo: :woohoo:

[NiniMorris]

I LOVE hearing happy updates!

I have to tell you...since we put our Brianna back in public school Oct 1, I can tell you every second she will be out of school for the next 2 years...how else can I plan our return trip to Disney? Their new schedule is the only thing I like about our public school. They get lots of breaks through out the year and only 6 weeks of summer break. (I've even given hubby some back up dates...like when they have a long weekend...I've almost got him convinced to get APs! LOL)

I'm really glad you get to take the other two to Brownies. When we first started we were told I could, but just before the cookie sale they told me we couldn't have any extra people there...for insurance purposes. Funny thing, we were meeting at my church building. With my DS handicaps it is IMPOSSIBLE to find a sitter for him on a regular basis.

Don't you just LOVE getting that Disney mail!!??!! It makes it all seem so real! I won't tell you how excited I got when I printed out our online check in confirmation! (the little things really make my heart go pitter patter when they are Disney related!!!)

Have a great time! Can't wait to hear your trip report!

Nini

[maroo]

I wanna buy some cookies!

popcorn:: (just pretend these are cookies)

YUM!



I was in the Cookie Brigade for years. I remember my Mom having TONS of boxes of cookies all over the floor in our playroom and sorting those things for a month!

[kdzbear]

I LOVE hearing happy updates!

I have to tell you...since we put our Brianna back in public school Oct 1, I can tell you every second she will be out of school for the next 2 years...how else can I plan our return trip to Disney? Their new schedule is the only thing I like about our public school. They get lots of breaks through out the year and only 6 weeks of summer break. (I've even given hubby some back up dates...like when they have a long weekend...I've almost got him convinced to get APs! LOL) I have her school calendar and her brother's since they are at different schools. However, it turns out it was a typo and she has school on the 20th. I guess she will need to miss another day!

I'm really glad you get to take the other two to Brownies. When we first started we were told I could, but just before the cookie sale they told me we couldn't have any extra people there...for insurance purposes. Funny thing, we were meeting at my church building. With my DS handicaps it is IMPOSSIBLE to find a sitter for him on a regular basis. I cannot find anyone to watch Tyler that is why the two little ones go with me. It is at our church/school and no one has ever said anything to me. I have all of the 4th and 5th graders this year and since it is just me and my "craft helper" I don't think anyone will complain as they don't want to take over or take the girls camping. My "craft helper" is really my assistant leader, but if you ask her, she says that she only does crafts. She does so much more!

Don't you just LOVE getting that Disney mail!!??!! It makes it all seem so real! I won't tell you how excited I got when I printed out our online check in confirmation! (the little things really make my heart go pitter patter when they are Disney related!!!) Disney Mail is the best. It was even in my husband's name and he gave it to me and let me open it since he knew how excited I was! :woohoo:

Have a great time! Can't wait to hear your trip report! Thanks for joining us!

Nini

I wanna buy some cookies!

popcorn:: (just pretend these are cookies)

YUM!

I was in the Cookie Brigade for years. I remember my Mom having TONS of boxes of cookies all over the floor in our playroom and sorting those things for a month!

Bre normally sells about 300-350 boxes of cookies each year. She and I go door to door to sell the things. My husband can take the list to work, but he is in small office so Bre really does most of the work. It seems like we have boxes and boxes until she gets them delivered. However, she knows that selling cookies sends her on summer activities and pays for her new uniform pieces. I don't think you can start teaching them to young how to earn things on their own. It will help her later in life! I do love eating them too!

[maroo]

Bre normally sells about 300-350 boxes of cookies each year. She and I go door to door to sell the things. My husband can take the list to work, but he is in small office so Bre really does most of the work. It seems like we have boxes and boxes until she gets them delivered. However, she knows that selling cookies sends her on summer activities and pays for her new uniform pieces. I don't think you can start teaching them to young how to earn things on their own. It will help her later in life! I do love eating them too!

I wanna buy a case of cookies! :goodvibes Will she ship them to me? (I would pay for shipping)...

[NiniMorris]

Bre normally sells about 300-350 boxes of cookies each year. She and I go door to door to sell the things. My husband can take the list to work, but he is in small office so Bre really does most of the work. It seems like we have boxes and boxes until she gets them delivered. However, she knows that selling cookies sends her on summer activities and pays for her new uniform pieces. I don't think you can start teaching them to young how to earn things on their own. It will help her later in life! I do love eating them too!

That just reminded me of our last cookie sale! DS (my special needs child) decided all the cookies were lonely...so he ate everyone he could! I ended up having to pay almost 200 out of pocket for the cookies he got before we noticed! (I think that was also about the time we found out he could not process sugar!!!)

Have fun!

Nini

[kdzbear]

I wanna buy a case of cookies! :goodvibes Will she ship them to me? (I would pay for shipping)...

Yes, she would love too! The sale starts at the end of January!

That just reminded me of our last cookie sale! DS (my special needs child) decided all the cookies were lonely...so he ate everyone he could! I ended up having to pay almost 200 out of pocket for the cookies he got before we noticed! (I think that was also about the time we found out he could not process sugar!!!) As for Tyler and the cookies, I had to keep them up on top of kitchen cabinets where I had to have a ladder to reach them. He could not open the sealed cases, but any cases that were open had to be kept up high. He only opened one box before they were moved and luckily it was one we had ordered! :laughing:

Have fun!

Nini

[kdzbear]

Tyler's Dream Volunteer just called. She wanted to know if we were getting excited about our trip. I told her tonight Tyler saw a Disney World pirate's commercial on TV and said, "Wanna Go!" pirate: Since Tyler only says so few words, she was very excited about this. She asked if we got our travel papers from Disney and I told her I got them yesterday. I also told her that I fixed the problem with their airline. She told me that she was going to mail down our itinerary for our trip, a Disney book and a small backpack for Tyler around the second week of November. She apologized for not driving down, but since it could be winter weather since did not want to risk it by herself. She also said that her husband is ill and she needs to be home with him. They are both older and I completely understand that! We talked about meeting up at one of the other Dream Factory events. I guess the Christmas movie is on a Friday night so we will probably miss that since it takes almost 3 hours to drive to KC. I guess we may meet her at the Royals game next spring. She also asked if I would send her a picture from the trip. I told her I would print a bunch of pictures and mail them to her. It is the least I can do after they granted him his Dream Trip! :wizard: Now we are just counting down to the trip! 29 Days! :yay:

[kdzbear]

Well Hayley came down with some sort of stomach bug and I managed to get it. I thought I was going to never leave the bathroom yesterday. It did not help that the dye they injected for my MRI yesterday could cause stomach upset too. I took some Imodium and I am starting to feel human again, but I am not ready to eat anything yet. It never affected Hayley too bad, except for the nasty diapers.

This morning I am supposed to be coaching my two soccer teams. Bre played at 10 and Tyler at 10:45 and they were their last two games. Tyler’s team is made up of four year olds and they only play four kids at a time on a little tiny field. They are so cute. I had to send my husband to coach in my place. I hope he can learn the kids’ names quickly!

So, while I am at home sick with Hayley I have come up with some more Christmas decoration touring plans that will not affect our park time.

Here we go!

Saturday, Nov. 21st is 4:30 Yak and Yeti reservations. Then we will take a bus to the Beach Club to see the Gingerbread Carousel: http://www.wdwinfo.com/Photos/Holidays-BeachClubResort-08/index.htm Then we will walk over to the Boardwalk and look at their decorations. I could not find ant pictures of them. Next, we will catch a bus to DTD and look who was there starting on the 15th of November last year: :santa: http://www.wdwinfo.com/holidays/christmas_downtown_disney.htm We will look at decorations and go shopping before calling it an early evening.

Sunday, Nov. 22nd is our 8:20 breakfast with Lilo and Stitch at the Polynesian. The decorations here do not seem to be as elaborate: http://www.wdwinfo.com/Photos/Holidays-Polynesian_Grand_Contemporary-08/index.htm Before we take the monorail to a park for the day we will head to the Grand Floridian via monorail to check out their gingerbread house. It is in the link above with the Contemporary’s pictures too! I guess we will stop by the Contemporary on our tour too to see the Pinocchio decorations. I just realized that we don’t have Chef Mickey reservations. Tyler must have eliminated that one when he was picking. We have never gone and not eaten there so this will be a first.

What do you think of my tour? Do you think we should take a break on our MK day and take the boat to Wilderness Lodge to look at their decorations?

[kdzbear]

I decided to add a few more photos. I went to upload some pictures to my Facebook page today for my brother. He purchased this giant monkey for Hayley last time he came to visit and then grandma gave her some monkey PJs. The monkey now goes everywhere with her.

http://i208.photobucket.com/albums/bb1/kdzarchan/Fall%202009/Hayleyandhermonkey.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/Fall%202009/MonkeyandHayley.jpg

While I was doing this I was thinking about how I wish I had taken some photos of Tyler’s first time playing soccer. Most of the games it was so cold or I was focused on coaching so I could not take photos. I opened up the memory card and there were about 10 pictures from his game on Saturday when I was sick. My husband is in the pictures, so my daughter must have taken them for me. She is so thoughtful! I just had to share two of them!

http://i208.photobucket.com/albums/bb1/kdzarchan/Fall%202009/Tylerathissoccergame.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/Fall%202009/Tyleratsoccer.jpg

[maroo]

What precious pictures! :love:

And very sweet of your daughter to take some for you. :thumbsup2

Well Hayley came down with some sort of stomach bug and I managed to get it. I thought I was going to never leave the bathroom yesterday. It did not help that the dye they injected for my MRI yesterday could cause stomach upset too. I took some Imodium and I am starting to feel human again, but I am not ready to eat anything yet. It never affected Hayley too bad, except for the nasty diapers.

Oh no! So sorry you got a bug. MRI?? Is that something new? I hope you are ok!

This morning I am supposed to be coaching my two soccer teams. Bre played at 10 and Tyler at 10:45 and they were their last two games. Tyler’s team is made up of four year olds and they only play four kids at a time on a little tiny field. They are so cute. I had to send my husband to coach in my place. I hope he can learn the kids’ names quickly!

Oh gosh. How sweet of him to coach! :love:

So, while I am at home sick with Hayley I have come up with some more Christmas decoration touring plans that will not affect our park time.

Here we go!

Saturday, Nov. 21st is 4:30 Yak and Yeti reservations. Then we will take a bus to the Beach Club to see the Gingerbread Carousel: http://www.wdwinfo.com/Photos/Holidays-BeachClubResort-08/index.htm Then we will walk over to the Boardwalk and look at their decorations. I could not find ant pictures of them. Next, we will catch a bus to DTD and look who was there starting on the 15th of November last year: :santa: http://www.wdwinfo.com/holidays/christmas_downtown_disney.htm We will look at decorations and go shopping before calling it an early evening.

Sunday, Nov. 22nd is our 8:20 breakfast with Lilo and Stitch at the Polynesian. The decorations here do not seem to be as elaborate: http://www.wdwinfo.com/Photos/Holidays-Polynesian_Grand_Contemporary-08/index.htm Before we take the monorail to a park for the day we will head to the Grand Floridian via monorail to check out their gingerbread house. It is in the link above with the Contemporary’s pictures too! I guess we will stop by the Contemporary on our tour too to see the Pinocchio decorations. I just realized that we don’t have Chef Mickey reservations. Tyler must have eliminated that one when he was picking. We have never gone and not eaten there so this will be a first.

What do you think of my tour? Do you think we should take a break on our MK day and take the boat to Wilderness Lodge to look at their decorations?


I missed this the first time you posted it. Glad you posted again so it would come to the top of my threads and I could read it. :)

Your plans look great! :) I think you will like seeing all of the decorations. I am so hoping that we are able to see some on our December trip!

[kdzbear]

I really wanted to keep this thread about Tyler, but I started getting headaches about three weeks before we moved. We moved Aug. 10th. I thought it was just from the stress of the move. However, they will not go away. I went to the minor emergency center right before our trip and they gave me a shot that they said should break the cycle and make them stop. However, I got one at Disney. It was the day I had to miss riding EE. Then about a week after I got home I went back to the doctor got another shot and a prescription. Another week later and I went to my regular doctor. She said to stop taking the first medicine and all Tylenol. I went a week with no medication and lots of pain. :sick: I had an MRI last Friday and I won't have the results for a week. I had another headache on Saturday and another one today. I just hope they figure out what is causing them soon so they go away for good. They start on either the left or the right side and then move to the whole head and feel as if someone is pressing a crown of thorns into your skull. It just feels as if I could release the pressure, I would feel so much better. I have never had headaches before and I will be glad to see these go. I do have Lortab now, but I can only take that when my husband is home since it knocks me out! I will get better soon! :cutie:

[Minniekins]

I really wanted to keep this thread about Tyler, but I started getting headaches about three weeks before we moved. We moved Aug. 10th. I thought it was just from the stress of the move. However, they will not go away. I went to the minor emergency center right before our trip and they gave me a shot that they said should break the cycle and make them stop. However, I got one at Disney. It was the day I had to miss riding EE. Then about a week after I got home I went back to the doctor got another shot and a prescription. Another week later and I went to my regular doctor. She said to stop taking the first medicine and all Tylenol. I went a week with no medication and lots of pain. :sick: I had an MRI last Friday and I won't have the results for a week. I had another headache on Saturday and another one today. I just hope they figure out what is causing them soon so they go away for good. They start on either the left or the right side and then move to the whole head and feel as if someone is pressing a crown of thorns into your skull. It just feels as if I could release the pressure, I would feel so much better. I have never had headaches before and I will be glad to see these go. I do have Lortab now, but I can only take that when my husband is home since it knocks me out! I will get better soon! :cutie:

I've just very recently began reading this ptr and obviously been totally lurking! But, just wanted to send some good thoughts and prayers your way, along with hugs! :hug: Headaches, and what you are describing sound like doozies, and the stress, can be so tiring and draining. Know you want to be 100% for your son's wish trip, too, so I hope you get some answers pretty quick here and that they can help you to be pain free soon! Anyway, just wanted to send some good vibes your way! Take care and feel better soon! :hug:

[maroo]

I really wanted to keep this thread about Tyler, but I started getting headaches about three weeks before we moved. We moved Aug. 10th. I thought it was just from the stress of the move. However, they will not go away. I went to the minor emergency center right before our trip and they gave me a shot that they said should break the cycle and make them stop. However, I got one at Disney. It was the day I had to miss riding EE. Then about a week after I got home I went back to the doctor got another shot and a prescription. Another week later and I went to my regular doctor. She said to stop taking the first medicine and all Tylenol. I went a week with no medication and lots of pain. :sick: I had an MRI last Friday and I won't have the results for a week. I had another headache on Saturday and another one today. I just hope they figure out what is causing them soon so they go away for good. They start on either the left or the right side and then move to the whole head and feel as if someone is pressing a crown of thorns into your skull. It just feels as if I could release the pressure, I would feel so much better. I have never had headaches before and I will be glad to see these go. I do have Lortab now, but I can only take that when my husband is home since it knocks me out! I will get better soon! :cutie:

I understand wanting to keep the thread about Tyler - but his Mom being healthy is very important for Tyler, too. :hug:

I am so sorry that you are in pain. I really hate that. Hopefully the MRI will give the medical team an idea of what is going on so they can get you feeling much better soon! :grouphug:

[kdzbear]

Thank you for all of the well wishes. The MRI came back normal today so I am waiting to hear from the doctor as to what the next step is. :confused3

[kdzbear]

A Big Give package came today. The mail person had to deliver it to my door since it had some problems making it to us. The exterior shipping paper was mostly shredded and there was a hole in the middle of the box. The contents were fine with the exception of the beautiful Mickey Mouse picture. He is missing the middle of his face and I am sure a little one spent lots of time making it for Tyler. :sad2:

I must warn you that I love to take pictures. I tried to make Tyler and Hayley wait until Breanna got home to open the box, but it was not going to happen today. So I made them sit on the couch and open it together. Then after it was all open, we wrapped up about three of the items in the undamaged tissue paper and set them aside so Breanna can be surprised when she gets home from choir practice tonight.

Here are Tyler and Hayley with the package:

http://i208.photobucket.com/albums/bb1/kdzarchan/Big%20Give/DSC03134.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/Big%20Give/DSC03135.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/Big%20Give/DSC03136.jpg

A princess wand: princess:

http://i208.photobucket.com/albums/bb1/kdzarchan/Big%20Give/DSC03137.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/Big%20Give/DSC03138.jpg

Tyler was so excited to get a Car’s lanyard for his pins! He loves to trade pins!

http://i208.photobucket.com/albums/bb1/kdzarchan/Big%20Give/DSC03139.jpg

Then they check out more goodies:

http://i208.photobucket.com/albums/bb1/kdzarchan/Big%20Give/DSC03140.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/Big%20Give/DSC03141.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/Big%20Give/DSC03144.jpg

The Journal is simply amazing. I can’t say thank you enough for it. Each page is customized to what we are doing that day. There are special pages for each of our dining reservations. It is gorgeous! I took several pictures so everyone else could see the talent and time that went into this journal.

http://i208.photobucket.com/albums/bb1/kdzarchan/Big%20Give/DSC03142.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/Big%20Give/DSC03143.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/Big%20Give/DSC03145.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/Big%20Give/DSC03146.jpg

Tyler decided to read the Coloring Book. He loves to look at pictures in books over and over.

http://i208.photobucket.com/albums/bb1/kdzarchan/Big%20Give/DSC03147.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/Big%20Give/DSC03148.jpg

The package came in the middle of lunch. After the package and lunch, Tyler was tired. He fell asleep in front of the front door. His blanket looks funny since this is his 5 lb. weighted blanket. My husband swears it feels like a 20 lb. blanket when you try to lift it, but I only sewed 5 lbs. of pellets in it. He uses it to go to sleep. Sometimes he still uses his baby 1 ½ lb. blanket. That is the only thing I know how to do with my serger is to sew weighted therapy blankets. I am sure that someday I will discover another use for it.

http://i208.photobucket.com/albums/bb1/kdzarchan/Big%20Give/DSC03149.jpg

My husband had to work late tonight and Tyler had gymnastics. Aaron and Breanna checked out the box together. I am not sure who was more excited! Here are some more pictures:

http://i208.photobucket.com/albums/bb1/kdzarchan/Big%20Give/DSC03150.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/Big%20Give/DSC03151.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/Big%20Give/DSC03152.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/Big%20Give/DSC03153.jpg

Aaron turned on the glow fingers for Tyler. He thinks they are so much fun. The flash from the camera made the lights not show up so much.

http://i208.photobucket.com/albums/bb1/kdzarchan/Big%20Give/DSC03154.jpg

Thank you Jodi from Ontario, Canada! I do not know your Dis username and I will replace your real name with it if you would like.

[Minniekins]

I'm glad you got some good news! :) Hopefully they'll figure out what the deal is soon.
Great pics, the kids sure look like they are having fun opening the box of goodies! :goodvibes

[2 princess 3 princes]

You are so very welcome! My daughter is upset that the damage to the box put a hole into her picture, but that's the mail I guess!

I hope that you guys have a great time. My family and I will be there in November also but will leave just before you arrive, it would have been so nice to be able to meet you!

Glad that you like the journal, I'm hoping to find the time to make one for myself, but time before we leave is getting tight!

Take good care of your precious family!

[kdzbear]

I'm glad you got some good news! :) Hopefully they'll figure out what the deal is soon.
Great pics, the kids sure look like they are having fun opening the box of goodies! :goodvibes

Thank You! :flower3:

You are so very welcome! My daughter is upset that the damage to the box put a hole into her picture, but that's the mail I guess!

I hope that you guys have a great time. My family and I will be there in November also but will leave just before you arrive, it would have been so nice to be able to meet you!

Glad that you like the journal, I'm hoping to find the time to make one for myself, but time before we leave is getting tight!

Take good care of your precious family!

It looks like something wet got set on the top of the box. Tell your daughter the picture is still beautiful and Tyler said, "Mickey" when he saw it. The picture is going in a scrapbook from the trip. We love the thought and time that went into it and do not mind the hole. It is too bad we will miss you by a few days! Good luck getting your journal done! princess:

[HeatherSue]

WOW! You post such wonderful pictures! Thank you so much!! I loved seeing the kids open their package! That journal is amazing!! The picture of Tyler sleeping by the door is so precious!

[kdzbear]

WOW! You post such wonderful pictures! Thank you so much!! I loved seeing the kids open their package! That journal is amazing!! The picture of Tyler sleeping by the door is so precious!

Thank you!

I have a new dilemma! All of the hours for the parks have changed for the week we are going. For example, the Magic Kingdom is open until 3 on the 22nd! I know that the kids won't make it that long, but I might go back after they are in bed and explore on my own. My husband would stay with the kids. Bre might want to come along too. I scheduled us to go to AK on the 21st and it is the only day that week that that park closes at 5 pm. Should I leave AK on this day and hope that everyone else will want to go on a day that this park is open later? Also, I have a reservation for breakfast at 8:10 am on the 25, the day we go home, at the Crystal Palace since the plan was to arrive before the park opens, but now the park opens at 8 am. Should I try for an earlier reservation? How early does the baggage check at the hotel open so I can check our bags. We are staying at All Star Sports. Help!!!!! :confused3

[kdzbear]

I walked down to get the mail today and there was a box in the mailbox. Bre and Tyler wanted to open it so bad, but I made them wait until Hayley woke up from her nap. My husband is now sick with a fever and he refuses to go get tested to see if he has the flu, which means he can’t take Tamiflu if he won’t get tested. I just hope he doesn’t get everyone else sick. I have to take 13 girls camping next weekend and I need to be well.

Here are the pictures of Tyler opening the box and then distributing the t-shirts to everyone. Mine was thrown at me, but I did not get a picture of that.

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03200.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03201.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03202.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03203.jpg

Maroo, they are so cute! :cutie: We love them! I really like the Tinkerbell and her pixie dust! :tink: Thank you Maroo! :grouphug:

[kdzbear]

Here are two pictures of Tyler and Hayley on Halloween. We met up with Breanna later in the night. She made cookies at Grandma's house. The only pictures I have of her are with Grandma and another cousin so I can't post them!

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03204.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03206.jpg

[princess&her4princes]

Hi!!
I finally got the chance to read your PTR for Tyler's wish trip, I'm so happy to hear that you got approved and you're taking this special trip! I hope that you and DH are feeling better soon! Thanks for sharing all of your pics, your family is just beautiful! And you are such a STRONG Mommy for all that you've gone through!!:hug:

I'm subbing to keep up to date! Your trip is SO CLOSE now!!!!:dance3:

[StefaniLyn]

The Big Give pictures are awesome. Thanks for sharing! And the Halloween pictures - priceless! Tyler makes a great pirate! Your trip is getting so close!!

[maroo]

Tyler is so cute!

I am so glad you like the shirts! :thumbsup2

[kdzbear]

Hi!!
I finally got the chance to read your PTR for Tyler's wish trip, I'm so happy to hear that you got approved and you're taking this special trip! I hope that you and DH are feeling better soon! Thanks for sharing all of your pics, your family is just beautiful! And you are such a STRONG Mommy for all that you've gone through!!:hug:

I'm subbing to keep up to date! Your trip is SO CLOSE now!!!!:dance3:
Thanks for coming over and joining in on our fun! Thank you for the compliments!

The Big Give pictures are awesome. Thanks for sharing! And the Halloween pictures - priceless! Tyler makes a great pirate! Your trip is getting so close!!

Thank you! Tyler loves pirates and dressing up like one. He was one last year too, but he outgrew that outfit so I had to make a new one!

Tyler is so cute!

I am so glad you like the shirts! :thumbsup2

Thank you so much! We do love them!

[kdzbear]

The mailbox was overflowing today! The girls had to wait for Tyler to wake up from his nap to open the boxes. Tyler was so exited!

First he opened an envelope from Ms. Creon in TX. I am sorry, I do not have disnames and will be happy to edit this to replace real names with disnames.

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03212.jpg

He was so excited. Tyler is a textures person. He kept feeling the suede body of Stitch.

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03213.jpg

Then he wanted to wear it!

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03214.jpg

He loves it! He does not want to take it off!

I will continue with the next package in the next post!

[kdzbear]

The next package was from Dreamer + Wisher and her family. Each kid’s presents were in their own bag with their names on them. Tyler had a Safari Mickey head shirt that he will wear when we go to the Animal Kingdom. Hayley had a Belle shirt and Breanna had a safari Minnie Mouse shirt. They are all so cute! Thank you so much!

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03215.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03216.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03217.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03218.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03219.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03221.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03222.jpg

[kdzbear]

Today was “N” day. Each of the three packages came from someone whose name started with “N”! The next package was for Hayley and Breanna, but Tyler opened it. It is from Nini, Brianna, Damien and Alyssa! He then would not let go of Breanna’s dress since he thought it was for him. He even tried it on, but I chose not to post that picture. Aaron took the picture despite my protests. Finally, Breanna was allowed to try on her new dress.

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03226.jpg

However, at this point we discovered that Tyler has a 101 fever. :sick: We think he has the swine flu and that is what we think my husband has, but since my husband would not get tested I can’t get Tamiflu for Tyler without getting him tested and the doctor’s office won’t open until the morning!

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03229.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03230.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03226.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03227.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03228.jpg

Thank you! The dresses are beautiful!

They came back to pose for more pictures as I was finishing this post so here are some more:

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03232.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03234.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03235.jpg

You can see that Tyler is not feeling well. My husband is now taking him to the minor emergency center after I gave him a hard time about not being tested so I could not now just have the doctor call in Tamiflu for Tyler.

[StefaniLyn]

OMGosh the Big Give people are just amazing! I don't blame Tyler for wanting to keep the dress - it's so incredibly adoarable! I'm a little biased though, having girls myself, :rotfl: Thanks for sharing!

[billwendy]

Hi!

Wow, your kids are soooo CUTE!!!

I hope Tyler and your DH are feeling better and the rest of you dont get sick!!

Could you tell me how you make your weighted blankets? Im an OT and would love to be able to do this - do you know how to make a bodysox???

Wendy

[chrissid7]

OMg how cute!!! Your kids are so adorable. I hope your whole house is well soon, and that it doesnt spread to the rest of you. Its not much longer now! :banana::banana:

[pipersmom]

Keeping Tyler and the rest of your family in my thoughts..it seems like a few wish families are dealing with flu right before their trips, maybe it's not such a bad thing, at least it will be one less worry while you're gone! :hugs So many cute things from the Big Give..those folks are so incredible...

[kdzbear]

OMGosh the Big Give people are just amazing! I don't blame Tyler for wanting to keep the dress - it's so incredibly adorable! I'm a little biased though, having girls myself, :rotfl: Thanks for sharing!

He did look cute in the dress. The Big Give people do have amazing talent!

Hi!

Wow, your kids are soooo CUTE!!!

I hope Tyler and your DH are feeling better and the rest of you don't get sick!!

Could you tell me how you make your weighted blankets? I'm an OT and would love to be able to do this - do you know how to make a bodysox???

Wendy

I do not know how to make a body sock. Weighted blankets are pretty simple. You need to make them weigh 10% of the kid's body weight plus one pound. For kids under age one, you only need one yard of fleece fabric. For older kids you will need more. You will fold the fleece in half so there is one less seam to sew. Use a serger for the two vertical sides to seal them. Then you use sewing chalk to evenly divide the blanket into squares. For Tyler's last blanket it weighed 5 pounds so it took about 1/4 cup of beads per pocket. You sew the vertical pockets all of the way to the top. For heavier blankets I would double stitch the pockets (I did not and have had to do repairs) and back stitch at each pocket point. Then you add the beads. They are plastic pellets that you buy at Hobby Lobby or a similar store. They come in 2 lb. packages. I used 40% off coupons until I had enough beads/ pellets. Then you put in the beads into the tall pockets. Then you sew across the bottom of your first row and once it is done, add more beads and keep going up the rows until the blanket it done. It will get very heavy and hard to sew, but it is worth it in the end. Then when you are finished you serger the top seam. Maker sure after you add the beads that you use lots of pins to keep the beads in their pockets and away from the sewing needle prior to sewing. Renegade beads will break needles! I hope this makes sense. His blankets help him sleep so much better. Lots of parents also use lap weighted blankets to help their kids concentrate on homework.

OMg how cute!!! Your kids are so adorable. I hope your whole house is well soon, and that it doesn't spread to the rest of you. Its not much longer now! :banana::banana:

Thank you! Aaron took Tyler to the doctor last night. It is not H1N1! He has an ear infection and a head cold. Both of his tubes are now out of place and one is completely gone. We will have to see if we can clear up this infection easily or we will be going back in for another set of tubes. I have lost count on what number we are on now! I have a slight cold, but I will get it better so I can take my Girl Scouts camping this weekend and the weather is now supposed to be in the 70's all weekend! It could snow here in November so this is exciting news!

Keeping Tyler and the rest of your family in my thoughts..it seems like a few wish families are dealing with flu right before their trips, maybe it's not such a bad thing, at least it will be one less worry while you're gone! :hugs So many cute things from the Big Give..those folks are so incredible...
Thank you! Since it is not the flu, we will try to get flu shots if they ever become available here. The Big Give items are super cute and those ladies and men do have incredible talent!

[NiniMorris]

Soooo happy to know the girls (and Tyler) liked their dresses! It is the first time I made anything for outside my family and I was so nervous!

Bri was so glad to see a picture of Bre wearing the dress! It was actually Bri's favorite dress I made for our last trip. (and she is a bit jealous that I was able to find a nice green to go with it. Her favorite color...I guess I'll have to remake hers! LOL)

Hope everyone gets to feeling better soon. Have a great trip!

Nini

[kdzbear]

Soooo happy to know the girls (and Tyler) liked their dresses! It is the first time I made anything for outside my family and I was so nervous!

Bri was so glad to see a picture of Bre wearing the dress! It was actually Bri's favorite dress I made for our last trip. (and she is a bit jealous that I was able to find a nice green to go with it. Her favorite color...I guess I'll have to remake hers! LOL)

Hope everyone gets to feeling better soon. Have a great trip!

Nini

The dresses are beautiful. My Bre likes to dress like little sis, but it is so hard to find matching clothes since one wears toddler sizes and the other pre-teen sizes. Thank you so much! I feel honored that we were your first family that you made dresses for. They are gorgeous! I need to figure out how to make some. I need to make 13 pouches this afternoon for my Girl Scout troop to take to camp this weekend to hold their swaps! :cheer2:

[princess&her4princes]

Aww, the shirts and dresses you got are adorable!!! What talented people!!! I'm so sorry to hear that DH and Tyler are sick...praying the rest of you stay healthy!!! :goodvibes

[kdzbear]

Aww, the shirts and dresses you got are adorable!!! What talented people!!! I'm so sorry to hear that DH and Tyler are sick...praying the rest of you stay healthy!!! :goodvibes

Thank you for the compliments. Well, Hayley and I are now sick too, but it is not the flu! :sick: We just have sinus and ear infections. The doctor is a little worried about Hayley and if she starts wheezing at all we have to give her breathing treatments twice a day. Hopefully, we should all be well soon and I will be able to take my Junior Girl Scouts camping this weekend!

[chrissid7]

ohhhhh nooooo! Im sorry you guys arent feeling well! I will be crossing fingers and toes that you get to go camping too.

I just found out that 2 of the kids who were at our Halloween party have the flu :scared1: so im a lil freaked out.

I hope Hayleys stays minimal and she doesnt start wheezing. Isnt it a mess? Im sooo ready for summer to come back

[maroo]

Gosh - I am sorry you guys are sick!

I hope you feel better very soon!

[kdzbear]

ohhhhh nooooo! Im sorry you guys arent feeling well! I will be crossing fingers and toes that you get to go camping too.

I just found out that 2 of the kids who were at our Halloween party have the flu :scared1: so im a lil freaked out.

I hope Hayleys stays minimal and she doesnt start wheezing. Isnt it a mess? Im sooo ready for summer to come back

Gosh - I am sorry you guys are sick!

I hope you feel better very soon!

I feel much better this morning after two doses of antibiotics. Hayley is back to her bouncy and happy self. Tyler is still running a high fever that does not want to come down. My husband has finally made an appointment to go and see the doctor this afternoon. He has been sick since Friday and probably got the rest of us sick.

Breanna, my little trooper, is still healthy and she needs to stay healthy so she can go on the camping trip this weekend. I started making 15 cute little swap bags and one of the serger threads came unthreaded. I tried my best to rethread it, but I can't. My husband said he would look at it again this morning. I will post pictures of them when I am done. Swaps are little knick-knack like items on pins that the girls trade at camp. We are making cute Indian corn ones. I will post pictures of those too. At meeting today we need to make 140 of them! At least there are 13 girls making them. I feel sorry for the troops with only four girls that need to make that many.

[Dreamer & Wisher]

We are back from our trip. We had a wonderful time, but it sure was warm.

I am so glad to see the kids liked their shirts and they fit them!

I hope you are all feeling better soon.

[inkedupmomma]

uhm..ok.. I swore that I subbed to your PTR!! I am smoking something?? Didn't I make a post on here??

Ugh.. I am losing t, or am entirely so busy that I don't know what I am doing anymore!

Just wanted to say, I hope Tyler is feeling better!! Was it swine?? Sick kids are the worse!! BUT, let them get it all out right now! then you can all be a-ok for your upcoming trip!

Also, how fortunate for you to get such AWESOME big gifts gives! or big give gifts..LOL! der.. I obviously can not type either lol! I am truly so happy for you guys! Your son reminds me of my nephew so much! Although, and I know this is going to sound terrible, your boy "looks" more normal than my nephew. Please do not take offense to that! I just mean, if I saw him, I would never think, oh there is something wrong. My nephew however, clearly looks like something is off. But e is the cutest thing, god love him!

I wish my sister would be smart and try to participate in something like you have done for Tyler! she could surely use some goodness in her life!

Can you please explain this weighted blanket? what are they for?

and SUBBING fer real fer real now lol!

[kdzbear]

We are back from our trip. We had a wonderful time, but it sure was warm.

I am so glad to see the kids liked their shirts and they fit them!

I hope you are all feeling better soon.

Thank you! We love the shirts! They are so cute and you are so talented!

uhm..ok.. I swore that I subbed to your PTR!! I am smoking something?? Didn't I make a post on here??

Ugh.. I am losing t, or am entirely so busy that I don't know what I am doing anymore!

Just wanted to say, I hope Tyler is feeling better!! Was it swine?? Sick kids are the worse!! BUT, let them get it all out right now! then you can all be a-ok for your upcoming trip!

Also, how fortunate for you to get such AWESOME big gifts gives! or big give gifts..LOL! der.. I obviously can not type either lol! I am truly so happy for you guys! Your son reminds me of my nephew so much! Although, and I know this is going to sound terrible, your boy "looks" more normal than my nephew. Please do not take offense to that! I just mean, if I saw him, I would never think, oh there is something wrong. My nephew however, clearly looks like something is off. But e is the cutest thing, god love him!

I wish my sister would be smart and try to participate in something like you have done for Tyler! she could surely use some goodness in her life!

Can you please explain this weighted blanket? what are they for?

and SUBBING fer real fer real now lol!

It was not swine flu. I am glad you are here now! Weighted blankets are used to calm down children when they have sensory overload. They are often used at night time to help children feel more secure and the weight helps them to fall asleep. They are used as lap blankets in classrooms for kids with special needs since just the little bit of extra weight on their laps helps them to concentrate! They are fairly easy to make and Tyler's blankets have been lifesavers. He would be up all night before he had his. A friend's church was making them for a local charity and she helped me make the first one and then I purchased a serger to make his heavier one. Hayley also has one that she sleeps with, but hers is not a necessity. They are also great for babies when made with the proper weight since the babies can't pull them up over their faces or get stuck in them like they can with traditional blankets. There are blessings and detriments to Tyler "looking normal". He can tend to blend in, but when he has a meltdown, which is frequent people just, stare at you like why aren't you doing anything. I just have to wait for the melt down to stop. He also can't talk well and people just assume he is shy. Diapers are a whole other issue. I get more rude comments from strangers wondering why he is so big and still in diapers. Your sister should check out Unique's website. They specialize in chromosome disorders and can give her a good starting point. We were lucky that the hospital sent us Rainbows, who provided Tyler with physical and speech therapy from the day he came home from the hospital. I have also learned that you have to be proactive or a special needs child will get lost in the bureaucracy. I have learned to fight for his needs and to never take no for an answer when he needs something.

Everyone with the exception of Breanna is still sick. I am finally starting to feel a little better, but I spent all last night coughing. Aaron is still spiking fevers and he has been sick since last Friday. Tyler and Hayley are still running fevers and their antibiotics are giving them the runs so we had to call the doctor and get additional medication for them to help alleviate the new problem that the antibiotics were causing. We hope that everyone will be well again soon. I do not remember the last time my husband missed a day of work so the fact that he has missed a whole week in unheard of. Everyone tested negative for both flu viruses and the doctor is not sure what we have other than then initial virus caused ear infections and sinus infections. I can finally breathe, but I am weak and tire easily. I am still trying to figure out how to go camping this weekend. I know lots of people are praying for our family and we thank you for this! :grouphug:

[kdzbear]

A new Big Give package came tonight. The return address says that it is from Stephen in NC. The box was filled with amazing goodies!

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03236.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03237.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03238.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03239.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03240.jpg

There were little photo albums for each child. There was a Disney ball for each child and Tyler and Hayley were having fun with the balls. The box contained Disney activity books. There were beautiful customized autograph books for each child.

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03245.jpg

The box continued to hold more treasures. There is a Disney bag that had each family member on it with special Disney Ear hats. Tyler’s had Stitch ears and Breanna’s had High School Musical ears. My husband loves that it has the Dream Factory logo on it. It is too cute!

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03241.jpg

Then the final three pieces made Tyler’s eyes light up! They were custom made Stitch clothes. When we began the Wish process Tyler could sign Stitch, but he could not say, “Stitch”, but now he can. He loves the clothes and did not want to take them off. He is not smiling since he is still sick. You can see in the pictures that Tyler and Hayley are still under the weather. I am hoping that Breanna stays healthy through the campout this weekend.

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03242.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03243.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03244.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03246.jpg

My husband commented that the autograph books look professionally done. He also wants to participate in the Big Give from the giving side after Tyler’s trip. You all have made a huge impression on him! Thank you again for all of the gifts. It means a lot to see Tyler, Hayley and Breanna smile so much! :thanks:

[pipersmom]

Such cool big give stuff! Keeping my fingers crossed that all will go well for the camping trip this weekend, I was a GS until I graduated from high school and have many wonderful memories of swaps and camping trips and visiting places I otherwise would never have been able to. Only two more weeks for you!!

[StefaniLyn]

Great pictures! The autograph books DO look professionally made. And the Stitch pirate outfit - ADORABLE!

Whenever I tell my my DD8, Kennedy, that something she made, cooked, or created is exceptionally good, she tells me it's because she added a secret special ingredient . . . . LOVE.

I can see that all of the BIG GIVE items are made with that same special ingredient as well. A lot of LOVE :love:

[inkedupmomma]

It was not swine flu. I am glad you are here now! Weighted blankets are used to calm down children when they have sensory overload. They are often used at night time to help children feel more secure and the weight helps them to fall asleep. They are used as lap blankets in classrooms for kids with special needs since just the little bit of extra weight on their laps helps them to concentrate! They are fairly easy to make and Tyler's blankets have been lifesavers. He would be up all night before he had his. A friend's church was making them for a local charity and she helped me make the first one and then I purchased a serger to make his heavier one. Hayley also has one that she sleeps with, but hers is not a necessity. They are also great for babies when made with the proper weight since the babies can't pull them up over their faces or get stuck in them like they can with traditional blankets. There are blessings and detriments to Tyler "looking normal". He can tend to blend in, but when he has a meltdown, which is frequent people just, stare at you like why aren't you doing anything. I just have to wait for the melt down to stop. He also can't talk well and people just assume he is shy. Diapers are a whole other issue. I get more rude comments from strangers wondering why he is so big and still in diapers. Your sister should check out Unique's website. They specialize in chromosome disorders and can give her a good starting point. We were lucky that the hospital sent us Rainbows, who provided Tyler with physical and speech therapy from the day he came home from the hospital. I have also learned that you have to be proactive or a special needs child will get lost in the bureaucracy. I have learned to fight for his needs and to never take no for an answer when he needs something.

Everyone with the exception of Breanna is still sick. I am finally starting to feel a little better, but I spent all last night coughing. Aaron is still spiking fevers and he has been sick since last Friday. Tyler and Hayley are still running fevers and their antibiotics are giving them the runs so we had to call the doctor and get additional medication for them to help alleviate the new problem that the antibiotics were causing. We hope that everyone will be well again soon. I do not remember the last time my husband missed a day of work so the fact that he has missed a whole week in unheard of. Everyone tested negative for both flu viruses and the doctor is not sure what we have other than then initial virus caused ear infections and sinus infections. I can finally breathe, but I am weak and tire easily. I am still trying to figure out how to go camping this weekend. I know lots of people are praying for our family and we thank you for this! :grouphug:

WOW! Being sick sucks! I am so sorry! I am glad it is not the swine flu though! I'm not scared like everyone else is about it, but still, any flu stinks! Will continue to keep you guys in our prayers!!

As for the looking normal thing, my nephew is tallish, but kind of hunched over. But looks his age some what, and honesty like I said, you can tell something is up, and people STILL do the same things they do to you! I guess fine or having an issue isn't the case? You are just supposed to kep your kid in check no matter what! I hate society most times! I guess God graced me with two very healthy kids for the protection of others..cause I would open up a can of whoop..well you know what, if someone even looked at me slightly funny about my kid! :lmao: I'm quick to say something if someone says something about my nephew too!

I am super interested in these weighted blankets now! Idk, if you know, but my Jack was "tested" for autism:rolleyes: If you met him, you could clearly see he is not. BUT, man is he a handful! Doesn't sleep through the night, aggressive, but can be sweetest kid ever! and smart as a whip! But he DOES NOT sleep through the night! He still gets up mid way through and hops into our bed! I wonder if a weighted blanket would keep him satisfied and sleep through the night!! We also have an appointment set up for a sleep specialist at CHOP (Children hospital of Philadelphia) , so maybe they have some ideas!

Anywho, happy Friday, and please keep us updated about your sickies!

[inkedupmomma]

oh wow! the big give is so wonderful! congrats!!!

[NiniMorris]

You know...I've never thought about weighted blankets.... my DS8 does not sleep through the night. The most I can hope for is 4 hours of uninterrupted sleep. Since he sleepwalks too, and hubby works nights...well sometimes it is MUCH less than 4 hours.

Since he has many 'symptoms' of autism,I don't know why I didn't think about this! I mean they do use weighted blankets in his therapies...DUH!!!


Thanks for the idea!

Nini

[Momofwishkid]

Hi, I finally got all caught up on your PTR and got some wonderful ideas for our DFN's. I hope you are all doing better soon. All this stuff going around is horrible. Congrats on all your Big Gift goodies their all so wonderful.

[kdzbear]

Thank you for all of the wonderful compliments. The weighted blankets are really a life saver! I want to reply to each of you, but I am still under the weather. I took 13 girls camping this weekend. The weather was in the mid 70's! It can and often does snow this time of year here so it was a great surprise. Today it is 59 and raining! Breanna came down with this crud at about 2 am on Saturday morning. As soon as everyone was up I called my husband and had him come to camp to pick her up. I had to stay with the other girls. I think maybe staying in bed would have been a better plan. The girls loved the trip and on Sunday morning a second girl in my troop came down with a fever! : scared1: I guess they will now all be sick soon. I took Bre to the doctor today and her symptoms are a lot less severe than what the rest of the family had, but maybe that is why she resisted it so long. She seems to be doing much better today while mine has settled into my lungs. The doctor said that her husband had the same thing and his lasted three weeks. I cannot survive another week and a half of this stuff. I need to be better now!

[kdzbear]

Tyler went back to school today after missing all of last week. He received a package on Saturday and my husband made him wait until I got back from the camping trip to open it. It is from Wendy! Thank you so much!

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03281.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03282.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03283.jpg

He loves it! It is so cute. I have tried to get him to try it on, but he was tired yesterday. Then today when he came home from school, he had some lunch and then fell asleep while I was changing his diaper. I guess he is still pretty worn out!

Hopefully, we will all be feeling better soon!

Here is an extra bonus photo:

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03284.jpg

Hayley took Tyler’s Baa-Baa and his blanket and fell asleep on the couch with them. Tyler found her about a half an hour later and instead of being mad, he just kissed her on the head and laid another blanket of his on her. It was too cute!

[billwendy]

Tyler went back to school today after missing all of last week. He received a package on Saturday and my husband made him wait until I got back from the camping trip to open it. It is from Wendy! Thank you so much!

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03281.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03282.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03283.jpg

He loves it! It is so cute. I have tried to get him to try it on, but he was tired yesterday. Then today when he came home from school, he had some lunch and then fell asleep while I was changing his diaper. I guess he is still pretty worn out!

Hopefully, we will all be feeling better soon!

Here is an extra bonus photo:

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03284.jpg

Hayley took Tyler’s Baa-Baa and his blanket and fell asleep on the couch with them. Tyler found her about a half an hour later and instead of being mad, he just kissed her on the head and laid another blanket of his on her. It was too cute!


Awww - poor little guy is getting back on track - I can certainly wait for a picture of that cute little boy!! Sounds like he loves his little sis too!!!:love:

[StefaniLyn]

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03282.jpg


Here is an extra bonus photo:

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03284.jpg



Love the photo of Tyler riiiiippppppping it out of the package! He looks so excited, and for good reason! Wendy did an amazing job on the overalls!

Awww. . . a little sleeping beauty!

[inkedupmomma]

he is sooo sweet! :lovestruc

[kdzbear]

Wendy, I tried my best and here is how the photos came out. He is being cheesy today!

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03286.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03287.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03289.jpg

Then there are a couple new trip planning developments. I received an email from the Dream Factory’s travel planner to let me know that Tyler’s, Aaron’s and Breanna’s flight had been changed. Apparently this did not set off a red flag with her as it did with me. They moved three of my family members to another flight! I contacted Delta and after 32 minutes on the phone with them we are all on the same flight again. However, we are now seated in 3A, 4A, 5A and 6A. Does anyone else see a problem with this? I am not worried about it. I know that the flight attendants will put us all back together once we are on the plane. The part that had me worried was that the first flight that they moved them off of only had 7 open seats when I pulled it up. Now, according to this new Delta representative all of our parties travel arrangements on Delta area all tied together and they cannot move one of us without moving all of us. I did not need that extra little scare right now.

I also came across some good news. I am trying to wait to make a final decision to see if we are given any expense money from our Wish organization or not. Disney is offering a discount on its pirate packages for resort guests. The package is half of list price so the most basic Pirate’s league package would be $25. I would need to let at least both Tyler and Breanna become pirates. Here is what it includes:

There are 3 packages available - each includes a sword and sheath, earring and eye patch, tattoo, pirate coin necklace, map case folder, and a personalized pirate oath!
The First Mate Package at $49.95 plus tax also includes:
• Bandana (reversible)
• Choice of Facial Effect look: Cursed Pirate, Captain Hook or Captain Jack
• Fake Teeth
• One (1) 5x7 picture

What do you think? Should I try to get appointments?

[billwendy]

[COLOR="Purple"]Wendy, I tried my best and here is how the photos came out. He is being cheesy today!

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03289.jpg

He looks ADORABLE!! Im so glad that they fit!!

And for the other person that mentioned it - Im ashamed to say that they are store bought!!!:confused3

[kdzbear]

Thank you to each and every member of the Big Give Family! :flower3:

I am simply overwhelmed with your talent and generosity. Just when I thought that the mail would go back to being normal mail another package arrived! The return address just says, “Engler” so I do not know your first name or Disname. Hayley is in heaven! She loves Tinkerbell. I cannot get the outfit off of her!

Tyler started to open the package and immediately turned to Hayley and said, “Baby” as he handed it to her. He now either calls her baby or by her middle name. He can’t seem to pronounce Hayley yet.

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03290.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03291.jpg

Hayley discovers it is Tinkerbell!


http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03292.jpg

Then she wants to show off her new outfit!

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03294.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03296.jpg

Then Tyler wanted more pictures taken of him too, but he keeps closing his eyes!

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03297.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03298.jpg

[pipersmom]

Okay, I don't know how I got so behind on your TR! Stop posting so much..lol. Seriously though, the outfits are too cute. Eek! At the flight arrangements, so glad you got it worked out. The pirate league packages sound like fun..if you think the kids would enjoy it, I would say go for it, esp with the price cut. Your trip is sooooo close, hooray!

[StefaniLyn]

:scared1: how in the world did you not freak out with that phone call? I would have flipped! I'm so happy to hear you got it all straightened out. Although, if you think about it . . . would being on a separate flight from your DH and kids really be that bad :confused3:lmao:

The newest Big Give package is just as adorable as the rest of them. "Baby" looks adorable in Tink couture!

[kdzbear]

Thank you again for all of the compliments! As for staying calm over the flight problem, I guess after dealing with everything I have with Tyler for the past four years I have learned to take one small step at a time. I have faith that things will work out the way they are meant to work out. I can't believe our trip is 10 days away! :woohoo:

Now for a little update:

I talked over the Pirate's League last night with my husband and he wanted to know everything that it included so I showed him the site. He told me that if I did it for Tyler then Bre would want to go to the BBB, but I explained that she could be a pirate too and that would make her just as happy.

So, this morning I opened up Dis and there was a special email. A wonderful Dismember wants to pay for their First Mate packages as part of the Big Give! :cloud9: I could not believe what I had read. Due to the great promotion, I pay one price and get two kids made up instead of one! pirate: We are going on Sunday the 22nd!

First we will have breakfast with Stitch :stitch2: at 8:20 am and then they will become pirates pirate: at 10:40 am. Then sometime that day we will include naps in the picture. The Magic Kingdom is open until 3 am that night! :scared1: We will not be staying that long, but if they take naps and swim in the afternoon, then we might stay a little later in the evening!

[princess&her4princes]

Hi!
Just getting a chance to catch up now, I've missed so much, but we're all sick here, too. Hope you and your crew are feeling better?:confused3

Love all the new outfits and things for the kids! How cute are all these outfits?!! Adorable!!!!:cutie:

Can't wait to hear all about the pirate adventure and BBB, how fun!!!!!! Looks like things are coming together!!! Are you starting to pack?!!

Hope you're well!!!!:goodvibes

[pipersmom]

So awesome about the pirate league for the kids! Breakfast with Stitch sounds fun, can't wait to see how it goes. You all are sooooo close..

[kdzbear]

Hi!
Just getting a chance to catch up now, I've missed so much, but we're all sick here, too. Hope you and your crew are feeling better?:confused3

Love all the new outfits and things for the kids! How cute are all these outfits?!! Adorable!!!!:cutie:

Can't wait to hear all about the pirate adventure and BBB, how fun!!!!!! Looks like things are coming together!!! Are you starting to pack?!!

Hope you're well!!!!:goodvibes

Aaron is doing much better, but still has a cough. Tyler and Hayley are great! Breanna has been home sick from school the past two days. I wish I could say I am better, but I am getting worse. I think it is now in my lungs. If I do not feel a lot better by Friday I will go back to the doctor again. I think it is hard being a mom and trying to get better since you have to take care of everyone else and never get to rest. I still would not trade my mom job for any other job!

So awesome about the pirate league for the kids! Breakfast with Stitch sounds fun, can't wait to see how it goes. You all are sooooo close..

I think Tyler will love having breakfast with Stitch! Then Tyler and Breanna will be transformed into scary pirates. I will have to try to get a picture of Tyler doing his sign language sign for pirate. The real sign was too hard for him to do, so he made up his own! pirate:

[disneymommieof2]

[COLOR="Purple"][SIZE="5"]
Then she wants to show off her new outfit!

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03294.jpg

Hi :wave2: I'm the one who made Hayleys tink outfit. I thought I put my DIS name on the package. Sorry about that!
I'm So happy that she likes it and that it fits!! She looks so cute!!
I hope you all have a great time on your trip. Thanks for sharing your family with us!!

[maroo]

The pictures are awesome!

You guys are going to have a BLAST on your trip!!! :goodvibes


(See...I am still here... been lurking...:rolleyes1)

[StefaniLyn]

So, this morning I opened up Dis and there was a special email. A wonderful Dismember wants to pay for their First Mate packages as part of the Big Give! :cloud9: I could not believe what I had read. Due to the great promotion, I pay one price and get two kids made up instead of one! pirate: We are going on Sunday the 22nd!


Amazing and incredible! I'm so happy the kids will be able to do the Pirate Experience and that you won't have to worry about the cost of it. What an amazing gift from the Big Give!

[kdzbear]

We are 8 days away from leaving! I just did our resort's on-line check-in! It is so close! :banana::woohoo::yay::cheer2:

[maroo]

We are 8 days away from leaving! I just did our resort's on-line check-in! It is so close! :banana::woohoo::yay::cheer2:

The 8 more days dance!!!!!

:woohoo: :yay: :cool1: :dance3: :yay: :cheer2: :woohoo: :yay:

[chrissid7]

Amazing and incredible! I'm so happy the kids will be able to do the Pirate Experience and that you won't have to worry about the cost of it. What an amazing gift from the Big Give!



woohoooo!~ Thats so awesome!! :banana:

That is so sweet of some incredible Dis'er :hug: :hug: :hug: who ever you are!!!

[StefaniLyn]

more happy 8 days dancing! :yay::woohoo::dance3::banana::banana::cheer2:We are 8 days away from leaving! I just did our resort's on-line check-in! It is so close! :banana::woohoo::yay::cheer2:

[pipersmom]

Woohoo for 8 days!! :cool1::banana::woohoo::yay::dance3::cheer2:

[p00h4me]

Only 1 more week!:cool1: How exciting!

[chrissid7]

:banana::banana: 1 week!!!:banana::banana:

I am so excited!!!! :dance3:
:yay: Lets pack some stuff today woohoo!!:yay:

Oh wait, im not going with you...:sad2:

:woohoo: 1 week :woohoo:

[NiniMorris]

We are 8 days away from leaving! I just did our resort's on-line check-in! It is so close! :banana::woohoo::yay::cheer2:


When I did the online check in...hubby just couldn't understand why I was so happy!!!
:banana::banana::banana::banana::banana::banana::b anana::banana::banana:

Congratulations!

Nini

[kdzbear]

Help! I need advice and help! When we went on our previous trip, we did not purchase souvenirs since we thought we would get them this trip. Tyler received his box from his Wish volunteer today. It had an adult S Dream Factory shirt, a Disney Lends a Hand Genie hat, a book about Disney cruises?, a disposable camera, a Dream Factory draw string bag and an itinerary. I guess I assumed, which I should not have done that there would be some sort of expense check to cover tips at restaurants and checked baggage. However, it is not in the box. :confused3:confused3:confused3 I just don't understand. We will find a way to make this work, but I am just so disappointed. I know I should not be. I really am grateful for everything the Dream Factory has done to make Tyler's Wish. There is also nothing in the package about meeting Stitch, which is Tyler's whole wish so I am glad I booked the breakfast I did. I am sorry, I know I am upset over nothing, but I am just so let down! :confused: I did email his Wish volunteer to ask her if I should call the airline to find out how much checked baggage was or if her travel coordinator had the rate list. I will see how she replies back.

[maroo]

UH.....

There was no expense check?

I would call them and make sure it wasn't misplaced? I have never heard of that?

I guess you are on the Dining plan...right? Did you get Free Dining? That covers most meals? But still...

ETA: Nevermind...I think the question you asked her is PERFECT. ;)

[kdzbear]

UH.....

There was no expense check?

I would call them and make sure it wasn't misplaced? I have never heard of that?

I guess you are on the Dining plan...right? Did you get Free Dining? That covers most meals? But still...

ETA: Nevermind...I think the question you asked her is PERFECT. ;)

There is no expense check! I guess they figured since we were on the dining plan that we did not need it. My response that I received about the checked bags was: "My husband and I just flew to Salt Lake last week on Delta and it cost us $40 for two checked bags. So be prepared.
Have a great time and please call me when you get back and let me know how Tyler got along." I guess we are on our own for tips that the dining plan does not cover. I should not have expected a check, but I did. Now, I need to re-think some plans and try to make Tyler's trip perfect for him!

[pacrosby]

hmmmmmmmm. Did they ever talk about an expense check during your previous conversations? I only say that because our MAW rep mentioned it right away.................that they wouldn't be getting us tickets to the MVMCP or character breakfasts or ANYTHING but that the check we would get would cover any of those little extras plus baggage check, tips lunch in the park etc. Even if she hadn't actually said it though I'd heard others talk about them so much I would've 'expected' it too.

Sorry for the disappointment. I get it. Your appreciative of all they've done but disappointed because you really thought it was coming....and probably already had it spent.

Regroup and refocus. You'll make it work:)

Enjoy the final days of planning!!!!!!!!!!!!

[kdzbear]

I will try to briefly recap the Wish situation with Tyler. First, he could not stay at GKTW and I will not go into the reasons for why. So, his Wish organization was going to put him up in a condo in Orlando that was donated. Then they were going to rent us a mid-size sedan. A family of 5 and a double stroller will not fit in a mid-size sedan. Then I assumed that they would provide us with about $50 a person per day for food. The total for those two items alone was about $1,600. I received a special email offer from Disney for Free Basic Dining plan in November during our dates. I sent the info. to the Dream Factory and I was told that they were still putting us up in the condo even though the offer I sent them was all inclusive and much cheaper. I knew that they were trying to save money to be able to grant more wishes. Then about a week later I received a phone call telling me that we were staying at All Star Sports with free dining. Our trip is still one day shorter than most trips. I guess I assumed since I knew other people that went on trips through the Dream Factory that we would still have an expense check to cover checked luggage, tips and meals to and from Disney while traveling. However, they had other ideas. It will be fine. We will make it work.

The important thing is that I made reservations for Tyler to have breakfast with Stitch and he can ride the Dumbos on his own without Stitch. We will make sure that he has the trip of a lifetime that he will never forget! The members of Disboards have already made our trip planning so much more magical than we could have imagined! We will enjoy the time we have together as a family! :grouphug:

[teresajoy]

I'm sorry things didn't happen the way you had thought they would. That must be pretty shocking so close to your trip! Did they tell you they would be paying for your tips and baggage too?

No matter what, you are going to have a WONDERFUL time!!! If you are like us, you will have so many snack credits left over, you will fill a carryon with snacks!!! We had a lot of fun at the Goofy Candy store at DTD using up credits the day before we came home. At Pop, they let us convert some of our counter service credits to three snack credits each. That was so fun!! We missed our bus back to the airport because we were trying to spend all the credits! :scared1:

[kdzbear]

There is hope yet........

The Dream Factory scheduled Tyler for a pirate make-over, but they are so confused. They made it for the 23rd at the castle? Pirates do not get made-over at the castle. So, I canceled that appointment. I still have both appointments on the 22nd that a wonderful disboards member is paying for for us. Anyway, I asked if it was pre-paid since I canceled it, but I did not tell her I canceled it. I knew from talking to the person at BBB that it was not pre-paid. The reply from the Dream Factory was that the money to pay for it comes out of our expense check???? I sent a new email asking if that was something we were supposed to have already. Now we will wait and see! popcorn:: popcorn:: popcorn::

[p00h4me]

Wow! Such excitment so close to your going on your trip! I hope they realized that they forgot to include the expense check and that you'll be getting one. Remember that God answers prayers! I have faith that things will work out just fine. Your family will have a wonderful time of great memories either way.

[pipersmom]

:hug: Sorry you've had such stress going on! It seems like a lot of the wish organizations don't send out expense checks until the very last minute. At first I kind of wondered why, but it occured to me. 1. There are some families that would prob spend a lot of the money not on the trip if they got it far ahead. 2. There has been at least one family that I know of that got the check, then ditched the trip. I know that doesn't seem like something people would do, but apparently it happens. Wait and see how they reply, but I would bet you'll get it 24-48 hrs before you leave.

[pacrosby]

Wow! Does the left hand know what the right hand is doing over there:confused3 How frustrating this process has been for you:sad2:


When I talked to our MAW rep today she said they generally don't give or even reveal the amount of the check until right before the trip (when they give you everything else) but she made it sound like it was because they wanted to 'surprise' the family. I get her point but from personal experience now I know how hard it is to plan the extras if you don't know how much you're working with.

I'm glad it looks like perhaps you will be getting something after all. Keep us posted please:):)

Pamela :santa:

Matty's Wish Trip http://www.disboards.com/showthread.php?t=2325607

[maroo]

yeah...this is a whole different trip...

Most of our trips were sponsored by MAW.

But judging by the reply you got...it sounds like she DID think you have a check... does that make sense? Like...yeah...that should be in your budget??

[2specialkids]

Hopefully they'll get this confusion cleared up quickly. MAW did our trip and they didn't pay for our lunch with JoJo (which was DS's actual wish) but I just allowed for it out of my pocket (ouch!). They didn't pay for baggage either but there was enough in the "gas & parking" to cover it. GKTW gets you free parking with your button so I used that to pay for baggage. We flew AirTran and round trip was $105 for baggage so check the airline website if you have to pay any of it.
Lots of prayers that this will ease up early in the week and you can plan more stress free! :hug:

[StefaniLyn]

I'm sorry that you are having a difficult time with your wish organization. As Maroo said, many of us here are MAW beneficiaries and therefore do not know much about how Dream Factory works.

Although it may be an akward conversation, I think your best bet would be to call either your wish granter or the Dream Factory and directly ask them if you will be receiving an expense check. Explain to them that while you are extremely grateful for giving Tyler his Wish to go to Disneyworld, that you do have concerns about the extra expenses that are not included with your lodging and free dining plan.

Tactfully remind them that there are many costs including, but not limited to baggage fees, tips (inform them that these are not included with the Disney dining plan and can add up quickly), souveniers (not necessary, but seriously who would expect to grant a child's wish and not allow them to buy a souvenier or two?), and other odds and ends. If possible, give them an estimate of what you expect to spend.

After explaining what you would need an expense check for, then stress to them why you need it. Monthly medications, tons and tons of copays and deductibles, etc, etc add up quickly. Additionally (and I don't know if this is the case with you), many parents of special needs children cannot work or are very limited to how much they can work because of the child's appointments and illnesses. I know that our budget is tight because I am unable to work and Bella's medical expenses (even though most is covered by insurance) add up quickly. If this trip were to cost us anything, we would not be able to go. Tell the Dream Factory the same applies to your family for Tyler's trip. Simply say something like - If I had known that we would be responsible for the extra expenses, I would have scheduled the trip at a different time so we would have time to save up for it. Even a couple hundred dollars makes a big difference in our household and with Christmas coming up, I had not budgeted extra expenses from the trip.

It does sound like there is some confusion within the organization as to whether or not you should receive an expense check. It seems as if some people think you are getting one while at the same time others don't. I do hope you get some clarificaiton soon. You certainly don't need that type of stress on top of everything else!:hug:

[kdzbear]

Wow! Such excitment so close to your going on your trip! I hope they realized that they forgot to include the expense check and that you'll be getting one. Remember that God answers prayers! I have faith that things will work out just fine. Your family will have a wonderful time of great memories either way.

Thank you for the support!

:hug: Sorry you've had such stress going on! It seems like a lot of the wish organizations don't send out expense checks until the very last minute. At first I kind of wondered why, but it occured to me. 1. There are some families that would prob spend a lot of the money not on the trip if they got it far ahead. 2. There has been at least one family that I know of that got the check, then ditched the trip. I know that doesn't seem like something people would do, but apparently it happens. Wait and see how they reply, but I would bet you'll get it 24-48 hrs before you leave.

Unfortunately, no check is coming.

Wow! Does the left hand know what the right hand is doing over there:confused3 How frustrating this process has been for you:sad2:


When I talked to our MAW rep today she said they generally don't give or even reveal the amount of the check until right before the trip (when they give you everything else) but she made it sound like it was because they wanted to 'surprise' the family. I get her point but from personal experience now I know how hard it is to plan the extras if you don't know how much you're working with.

I'm glad it looks like perhaps you will be getting something after all. Keep us posted please:):)

Pamela :santa:

Matty's Wish Trip http://www.disboards.com/showthread.php?t=2325607

This organization is very confused and it is difficult when my Wish volunteer keeps having to go to higher-ups to ask questions.

yeah...this is a whole different trip...

Most of our trips were sponsored by MAW.

But judging by the reply you got...it sounds like she DID think you have a check... does that make sense? Like...yeah...that should be in your budget??

No expense check is in the budget.

Hopefully they'll get this confusion cleared up quickly. MAW did our trip and they didn't pay for our lunch with JoJo (which was DS's actual wish) but I just allowed for it out of my pocket (ouch!). They didn't pay for baggage either but there was enough in the "gas & parking" to cover it. GKTW gets you free parking with your button so I used that to pay for baggage. We flew AirTran and round trip was $105 for baggage so check the airline website if you have to pay any of it.
Lots of prayers that this will ease up early in the week and you can plan more stress free! :hug:

I'm sorry that you are having a difficult time with your wish organization. As Maroo said, many of us here are MAW beneficiaries and therefore do not know much about how Dream Factory works.

Although it may be an akward conversation, I think your best bet would be to call either your wish granter or the Dream Factory and directly ask them if you will be receiving an expense check. Explain to them that while you are extremely grateful for giving Tyler his Wish to go to Disneyworld, that you do have concerns about the extra expenses that are not included with your lodging and free dining plan.

Tactfully remind them that there are many costs including, but not limited to baggage fees, tips (inform them that these are not included with the Disney dining plan and can add up quickly), souveniers (not necessary, but seriously who would expect to grant a child's wish and not allow them to buy a souvenier or two?), and other odds and ends. If possible, give them an estimate of what you expect to spend.

After explaining what you would need an expense check for, then stress to them why you need it. Monthly medications, tons and tons of copays and deductibles, etc, etc add up quickly. Additionally (and I don't know if this is the case with you), many parents of special needs children cannot work or are very limited to how much they can work because of the child's appointments and illnesses. I know that our budget is tight because I am unable to work and Bella's medical expenses (even though most is covered by insurance) add up quickly. If this trip were to cost us anything, we would not be able to go. Tell the Dream Factory the same applies to your family for Tyler's trip. Simply say something like - If I had known that we would be responsible for the extra expenses, I would have scheduled the trip at a different time so we would have time to save up for it. Even a couple hundred dollars makes a big difference in our household and with Christmas coming up, I had not budgeted extra expenses from the trip.

It does sound like there is some confusion within the organization as to whether or not you should receive an expense check. It seems as if some people think you are getting one while at the same time others don't. I do hope you get some clarificaiton soon. You certainly don't need that type of stress on top of everything else!:hug:

Here is the response I received today: Okay ........... In the paperwork that I sent you is the time of day and day of the pirate party.
The Dream Factory did not give you folks any expense money because everything was already paid for.

Have a great trip and I hope the weather is good for you.


I think at this point I am done trying to explain that the pirate makeover, the tips and the airport baggage fees are not covered. We will find a way to cover it. I do stay at home with my 3 kids. However, I also do mystery shopping as a side job. It does not pay much, but I can pick up a few extra jobs over the holidays to cover the extra expenses and we will make it work! Tyler will never know the difference! :grouphug:

[maroo]

4 days left!!!!!!

:woohoo: :yay: :cheer2::cool1:

[kdzbear]

I was inspired by the Big Give. I went to the fabric store yesterday since I wanted matching outfits for MVMCP. However, I took Breanna and Tyler with me. The two of them could not agree on any fabric, but we finally found some. Then last night at 7:30 PM my husband discovered a $10 coupon off of a $10 purchase at Kohl’s. Bre and I went and found shirts to wear with the shorts and skirts. None of the shirts match each other, but they are all Christmas related and the bottom halves will all match. Then I purchased material to go with their safari Mickey and Minnie shirts from the Big Give. Tyler picked a giraffe pattern for his shorts and Bre picked a leopard pattern. Then I really wanted to find some Belle material so we went to a second fabric store. I did not find what I was looking for, but Tyler found a bolt of Handy Manny material, took it off the shelf and carried it around the store. Bre found High School musical material. I have finished all of Tyler’s shorts. I have made Hayley one skirt. I had a basic skirt pattern that I shortened the length of and it is still long on her and then I made a little ruffle. I attached the ruffle with my serger. I guess it can make things other than weighted blankets. It is so cute. Here are some pictures so far. Now, I need to get back to sewing while Hayley takes her nap and the other two are back at school!

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03300.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03299.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03301.jpg


:cloud9: :woohoo: :cheer2:

[pipersmom]

Too cute! I'm hoping after Christmas I can start doing a few small things for Piper. I can sew, but I'm still learning to do clothes, so it takes me a while. I have done some AG clothes for her & my nieces dolls, so I'm thinking if I can do clothing that small, her should be easy! I love the shorts and skirts :)

[princess&her4princes]

Just a few more days now!! WOW!!!!!!!!:dance3: You must be SO excited. Love the new outfits you made, how cute!! You are so talented, I wouldn't even know how to use the machine!!!!:laughing: Hope your packing is going well!!!!

[StefaniLyn]

The shorts and skirt are so cute! You did a wonderful job!

I'm sorry to hear of the disapointing outcome with your expense check.

[inkedupmomma]

hey sorry i have been mia! so sorry to hear of your troubles with this company! while it's awesome they are doing this, what a pita and needless worry! don't they know you are already stressed!

Just 4 more days now, here's hoping for excellent news!

[kdzbear]

Thank you! I must admit that I am not good at sewing. I had to rip the seams out of the first pair of shorts since I made the waist into the legs. However, as long as the waist is elastic I can make them. I don't do zippers. The skirts are the easiest. It is just two pieces of fabric that you sew together at the seams. Then you add elastic as for the waist and sew a seam at the bottom. I just made a long stitch for the ruffle and pulled the bottom thread to gather the material and I cheated by folding the fabric for the bottom seam of the ruffle. Then I just serged the bottom of the skirt and the ruffle together. It took less than 30 minutes to make a skirt with a ruffle and I have never made one before. I also only had the pattern for the straight skirt. I examined the ruffle on Hayley's Big Give Tinkerbell skirt to figure out the best way to add a ruffle.

Here is the last one for Hayley:
http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03302.jpg

Just a few more days now!! WOW!!!!!!!!:dance3: You must be SO excited. Love the new outfits you made, how cute!! You are so talented, I wouldn't even know how to use the machine!!!!:laughing: Hope your packing is going well!!!!

Thank you! I just purchased a sewing machine when Bre was little and a sewing manual. I have no training. I am making progress on packing. I am done sewing for Tyler and Hayley. I just need to make a few skirts for Bre. I will sew a little more today and then after I pick Bre up from school, I will gather everyone's outfits for the week! It is so close! :banana:

[billwendy]

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03300.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03299.jpg

http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03301.jpg


:cloud9: :woohoo: :cheer2:

they are all adorable! where did you find the Handy Manny fabric!! I need some of that for sure!!!

Have a WONDERFUL TRIP!! Did you pack yet?

[kdzbear]

The shorts and skirt are so cute! You did a wonderful job!

I'm sorry to hear of the disapointing outcome with your expense check.

Thank you for the compliments on my sewing!

hey sorry i have been mia! so sorry to hear of your troubles with this company! while it's awesome they are doing this, what a pita and needless worry! don't they know you are already stressed!

Just 4 more days now, here's hoping for excellent news!

We will have a fantastic trip just being able to spend time together as a family! :wizard:

they are all adorable! where did you find the Handy Manny fabric!! I need some of that for sure!!!

Have a WONDERFUL TRIP!! Did you pack yet?
I have not packed yet, but outfits are laid out all over my bed. I needed Bre to come home to finish her last 3 skirts. My pattern only went to a 6x so I have had to extend it to a size 12 and before I cut the fabric, I wanted to hold the pattern up to her. The Handy Manny fabric is at Hancock Fabrics. They actually had two different Handy Manny fabrics and a Princess and the Frog fabric. All of the licensed character fabric is also 50% off this week! :woohoo: However, there were no princesses to be found anywhere! I have some Cinderella fabric and some purple princess fabric from when Bre was little, but they don't match with the shirt. Let me know if you can't find the Manny fabric and I will pick some up and send it to you!


Now, I am really off to finish packing before Aaron gets home! I have an hour! :rolleyes1

[pacrosby]

Hey.....what a great job!! They look terrific. I can sew home goods (window treatments, tablecloths etc.) but not clothes. I was thinking of trying to do a fleece blanket or two (Disney themed of course) for whoever's riding in the stroller on those chilly mid-December nights at the park. You've inspired me to get movin':thumbsup2

I'm glad to hear you are no longer stressing about all the shenanigans with your Wish organization. It's getting close :yay: I'm excited for you.

Pamela :santa:

Matty's Wish Trip http://disboards.com/showthread.php?t=2325607

[p00h4me]

A great job of sewing! The big day is getting closer and closer! All of you must be getting very excited. Only 3 more days! :cheer2: Hope the packing is going well and everyone is getting healthy for the trip. Lots of pixiedust: and :tink:!

[kdzbear]

Hey.....what a great job!! They look terrific. I can sew home goods (window treatments, tablecloths etc.) but not clothes. I was thinking of trying to do a fleece blanket or two (Disney themed of course) for whoever's riding in the stroller on those chilly mid-December nights at the park. You've inspired me to get movin':thumbsup2

I'm glad to hear you are no longer stressing about all the shenanigans with your Wish organization. It's getting close :yay: I'm excited for you.

Pamela :santa:

Matty's Wish Trip http://disboards.com/showthread.php?t=2325607

You would be amazed at how easy shorts are to make. I started with PJ shorts and now any elastic shorts are simple. Now, I have discovered that skirts are even easier!

A great job of sewing! The big day is getting closer and closer! All of you must be getting very excited. Only 3 more days! :cheer2: Hope the packing is going well and everyone is getting healthy for the trip. Lots of pixiedust: and :tink:!

Thank you! Everyone is mostly well. We still have a few lingering runny noses and coughs. I am hoping that the Florida sunshine is the cure for this! I have finished pakcing everyone's clothes. I burned the pictures from my memory stick to a DVD. I just need to erase the memory stick now. Why is it so hard to hit the erase button? I know the pictures are on the DVD and online at Shutterfly so they are safe. It is just that tiny bit of doubt that is there right before I hit erase!

Here are Bre's 3 skirts: http://i208.photobucket.com/albums/bb1/kdzarchan/DSC03303.jpg

Right now I am anxiously waiting for Tyler to come home. I called the school about 30 minutes ago. He is normally home at 12:10, but there was a problem with the bus and it broke down in the school lot. I was told that he his back in the classroom and being entertained. They better feed him lunch if they keep him much longer. The school said they did not call since they thought that all the kids that rode the bus go to daycare. I informed them that Tyler always comes home and since he can't talk someone needs to look out for him. Sorry for my rambling. I just want him home with me!

[kdzbear]

New update: Instead of packing I am now dealing with my son's well being! He arrived home at 1:10 pm and school let out at 11:50 am. The bus company told me he was in the school and he was not. He was strapped to his bus seat on the bus for an hour and 20 minutes while they waited on a new bus. I have been on the phone with the principal on and off all afternoon. The teachers are claiming they had no idea that the kids were on the bus that long and the bus company is saying that the teachers would not let the kids back in the school. I guarantee that when this is over, it will never happen again. Airlines can't keep you on a plane that long. Imagine a 4 year old that can't communicate and there were 5 of them on the bus. Then they told me that they did not call since they thought all of the kids on the bus went to daycare. Tyler has never gone to daycare. Now I am waiting for the principal to interview the bus driver and get back to me. She assures me that this will never happen again. I am just so mad right now. They are supposed to take care of my little guy when he is at school! :headache:

[p00h4me]

Yikes! Poor Tyler and the other children left on the bus. Isn't there some record at the school office that tells them which children goes home and which goes to day care? I don't blame you for being upset over this incident especially having you worry when Tyler didn't show up at the normal drop off time. Hope the fire you put under the Principal will straighten out the office and bus company that if this happens again, the outcome will be different. This is not a time for you to have this added stress!

I forgot to mentioned that you also did a great job on Breanna's skirts.

[princess&her4princes]

OMG!!! I can't even imagine how stressed you must be!!!:hug: That is horrible that they did that to Tyler (and all the other children!!), was he okay when he got home? So glad he made it home safely but I'm with you, it's their responsibility to make sure that that child is safe when not at home with you!! Thinking of you!!!!:goodvibes

[pipersmom]

First, hooray! For having the packing all done. Now..ugg! What were they thinking??? (Or what kind of people are being hired to be bus drivers?) That they would think it's okay to keep any kids, much less kids with special needs on a school bus for that long ?? I am mad for you right now, not that you need any help! That Principal better be doing some serious grovelling when she calls you back.

[misskate]

UGH! What a day for Tyler and you! Disney is just what you'll need. :) I am frustrated for you that they would handle the situation like that. I understand miscommunication, but that is ridiculous. Guaranteed some of those kids had to go the bathroom at least! Rough day, for sure.

GREAT job on those skirts!! I am going to try sewing some for my little one. (She's only 6 months though, thankfully. Lots of time to practice up!)

Hope the rest of your day went better! :hug:

[StefaniLyn]

Unbelieveable! I hope the principal gets to the bottom of this, quickly! It is so rediculous and unacceptable for a non verbal child to be restrained for that period of time. I believe a student can only beIf the principal doesn't give you a satisfactory answer, contact whichever administrator is in charge of students with special needs. And then the superintendent.

I'm glad that you have finished packing but very sorry you have to deal with this mess 3 days before your trip. I hope it is resolved soon.

Great job on the skirts by the way!

[maroo]

New update: Instead of packing I am now dealing with my son's well being! He arrived home at 1:10 pm and school let out at 11:50 am. The bus company told me he was in the school and he was not. He was strapped to his bus seat on the bus for an hour and 20 minutes while they waited on a new bus. I have been on the phone with the principal on and off all afternoon. The teachers are claiming they had no idea that the kids were on the bus that long and the bus company is saying that the teachers would not let the kids back in the school. I guarantee that when this is over, it will never happen again. Airlines can't keep you on a plane that long. Imagine a 4 year old that can't communicate and there were 5 of them on the bus. Then they told me that they did not call since they thought all of the kids on the bus went to daycare. Tyler has never gone to daycare. Now I am waiting for the principal to interview the bus driver and get back to me. She assures me that this will never happen again. I am just so mad right now. They are supposed to take care of my little guy when he is at school! :headache:


Oh. My. Gosh.

I am so, so, so sorry.

Is he ok?!? Are YOU ok???

Keep us posted.

Huge hugs to you!

[chrissid7]

OMG!!! I know you must be furious!! I am so sorry that happened to him well actually all of you, I hope you are all feeling better and safe and now ready to GO TO DISNEY!!!!!!!!!!!!!!! :dance3::dance3:

I just wanted to tell you that I hope yall have the best week of your life!!!!

Im not sure what the next few days will bring and if I will be able to post much with Alyssa being admitted, but I will be thinking of ya and praying for your safe journey!! I soooo wish I were going but im not too far behind lol!

I cant wait for your posts popcorn::

[princess&her4princes]

One more day!! One more day!!!:dance3: Hope you're hanging in there and ready!! Thinking of you!!:goodvibes

[p00h4me]

Just wanted to wish Tyler and your family a wonderful and fun wish trip! Can't wait to hear all about it when you get back! Sending lots of good thoughts and prayers your way during your trip. :yay::cheer2::cheer2::cool1::mickeyjum:donald:

[inkedupmomma]

tomorrow, tomorrow!:cool1:

[pipersmom]

Woohoo!! One more day for you guys! We're so excited for you :)

[Momofwishkid]

Just stopping by to say Yay one more day!!! Hope you have an amazing trip. I'll be here waiting to hear all about it when you get back.