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

[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!!


Go Tyler, Go!

 

[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

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

 

[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!!

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

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!

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!!!!

 

[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. 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.

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 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!

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!

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.

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

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

 

[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.