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Old 04-23-2009, 03:23 PM   #16
kdzbear
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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.
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Tyler's Wish Trip (Nov. 20-25, 2009): http://www.disboards.com/showthread.php?t=2154359 Sept. 12-20, 2009 Trip report: http://www.disboards.com/showthread.php?t=2292505
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Old 04-23-2009, 04:58 PM   #17
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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
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Old 04-23-2009, 08:24 PM   #18
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Quote:
Originally Posted by tinytreasures View Post
so glad I found you
what a miracle you have there

I can relate to you dh as a foster parent of special needs children we know each and every one finds their way into our house for a reason
we cry when we have to let go but the ones that have needed us the most are the ones that end up staying forever
He is a miracle and the great part is that I get to hug my little miracle everyday! You are a special person to be a foster parent. I think it would be so hard to love a child and care for them knowing that you will only have them for a short time period.
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Old 04-23-2009, 08:25 PM   #19
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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
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Old 04-27-2009, 12:19 PM   #20
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Here is a blastball update from Thursday night. I will try to explain the game and then I will add the photos. First the fielding team stands in the field on rubber bases spread out from first to third bases. There are five kids on each team. Then one team bats through its entire order and then they switch spots. Once the player hits the ball, they run and jump on first base which honks when jumped on. Then they go back to the bench. They let each team bat through the order three times and then the game is over. It is played with a heavy rag type ball so the kids don't need gloves to field the ball. I hope this is making sense. It is too cute to watch!


Hayley before the game


Tyler is ready for the ball


Tyler hitting the ball


Tyler running to first


Tyler reaching first base


His team fielding a ball


Getting ready to hit


Contact!


Fielding again!


Waiting for the ball

Sorry for posting so many pictures. I took a ton of photos that night since it was his first time playing a team sport. He did so great. The whole crowd was cheering for him. It was amazing!
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Tyler's Wish Trip (Nov. 20-25, 2009): http://www.disboards.com/showthread.php?t=2154359 Sept. 12-20, 2009 Trip report: http://www.disboards.com/showthread.php?t=2292505
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Old 04-27-2009, 01:00 PM   #21
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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!!


Go Tyler, Go!
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Old 04-27-2009, 02:53 PM   #22
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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.
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Old 04-27-2009, 05:40 PM   #23
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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

and dessert


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.

Here we are entering from the tunnel


Walking the warning track






Tyler, Bre and my husband are about half way up in this picture

Hayley wants to practice pitching in the bullpen

Before the game from the outfield fence

Scoreboard from the field

View from the outfield on the warning track of the field

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.













Actual photo of the game
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Tyler's Wish Trip (Nov. 20-25, 2009): http://www.disboards.com/showthread.php?t=2154359 Sept. 12-20, 2009 Trip report: http://www.disboards.com/showthread.php?t=2292505
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Old 04-27-2009, 05:50 PM   #24
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Very cool pics. Makes me wish we were having hotdogs and garlic fries for dinner tonight!
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Old 04-29-2009, 07:33 PM   #25
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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.
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Old 04-29-2009, 09:22 PM   #26
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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!!

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

Hugs to the kiddos!!
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Old 05-10-2009, 01:43 PM   #27
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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!

Anyway...I am glad I am caught up and can't wait to see more pics!
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Old 05-11-2009, 10:15 PM   #28
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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
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Tyler's Wish Trip (Nov. 20-25, 2009): http://www.disboards.com/showthread.php?t=2154359 Sept. 12-20, 2009 Trip report: http://www.disboards.com/showthread.php?t=2292505
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Old 05-12-2009, 08:37 AM   #29
maroo
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Quote:
Originally Posted by kdzbear View Post
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!!!!
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Old 05-14-2009, 01:57 PM   #30
kdzbear
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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.
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Tyler's Wish Trip (Nov. 20-25, 2009): http://www.disboards.com/showthread.php?t=2154359 Sept. 12-20, 2009 Trip report: http://www.disboards.com/showthread.php?t=2292505
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