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

[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?

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 She doesn't understand that Kansas is big and not everyone lives just across the water.

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) 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!

 

[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!

 

[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:

 

[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! I am so sorry that you guys are struggling.

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

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

 

[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!

 

[Corrine 1973]

Happy Birthday, Tyler!!!!

 

[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!

 

[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!

 

[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!

She doesn't know who Stitch is?!?!? 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!