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Old 10-30-2008, 07:47 PM   #1
tinytreasures
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Jason's Wish trip we are off

I am so excited to be a part of this forum, you have all made me feel so welcome

Cast members
Kathleen-me mom to 41 so far waiting for the phone to ring with more (ok we are up to 44 now since we have expended a few times since starting this report )
Loren-best husband and daddy everyone that comes in our door
Jason- 10 yrs old wish child
Avyella- 8 yrs (22 week preemie with CP and blind in one eye)
Christian 7yrs (FAS)
Hayden 4 yrs (arthritis)
Isabella-(Ella/Bella/Mella sometime Smella) 2 yrs (hearing impaired)

We are a foster home that adopts special needs children

We didn't plan on doing special needs foster care till the call for Jason came in out of the blue saying we have a "3 month old baby boy with deformed hand and a really bad cold" could you take him. We couldn't get there fast enough
Turns out he was one sick little baby. We found this out years later when a nurse came up to me and said does your son have a deformed hand? I said yes she said "I can't believe he is still alive we did the death watch on him the night he was taken from his bio-mom"
Jason has Primary immune deficiency, Holt Oram syndrome (his deformed hand) a minor heart condition and bad bad lungs (he turns blue a lot)
He has had 9 surgeries so far including 2 huge ones to give him a thumb. His left thumb had no bones or muscles in it so at 12 months they took his index finger and made him a thumb with it. Then at 6 yrs old he needed a muscle transplant to give it more strength. He still gets mad it doesn't do what he wants it to do and his arm is shorter then the other one. We call it his "Mickey Mouse hand" since he only has 4 fingers too
He has spent more time then I want to think about hooked up to a IV pole.
He had 3 PICC lines in before he was 3 yrs old.
On his Adoption day the Judge was freaked out because in comes this little boy, a month shy of his 3rd birthday hooked up to a IV pack that he wore in a little clear backpack. We were scared he wasn't going to grant our adoption since he kept asking us if we knew what we were getting into.
Jason got his port in right before he turned 5 and has been doing IGG treatments every 21 days ever since.
He has been doing really well the last 12 months so we decided to put in for his wish trip and we got notice 3 weeks later we was approved (plus we were waiting for our sibling group of 4 to go home they were here for almost a year and left the week I sent in the paperwork)
I have been living on this site ever since.

We hope to hear in the next 2 weeks if Grandma can come as his PCA and our dates to travel.
Grandma and grandpa plus my husbands sister are all planning on coming
Does anyone know how that work? Can they come to the GKTW to hang out with us and help us?

Last edited by tinytreasures; 02-21-2009 at 05:26 PM.
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Old 10-30-2008, 07:47 PM   #2
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here is the crew at Ella's adoption
sorry I had to mess with Christian's face since his adoption is not done yet

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Old 10-30-2008, 08:36 PM   #3
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hi

what a beautiful family, i cant wait to hear more as your plans progress
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Old 10-30-2008, 09:15 PM   #4
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Your story is so amazing Kathleen!! I look forward to hearing all about it and your trip.
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A link to my TR: http://www.disboards.com/showthread....0#post27875290
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Old 10-30-2008, 09:44 PM   #5
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Quote:
Originally Posted by tinytreasures View Post
I am so excited to be a part of this forum, you have all made me feel so welcome

Cast members
Kathleen-me mom to 41 so far waiting for the phone to ring with more
Loren-best husband and daddy everyone that comes in our door
Jason- 10 yrs old wish child
Avyella- 8 yrs (22 week preemie with CP and blind in one eye)
Christian 7yrs (FAS)
Hayden 4 yrs (arthritis)
Isabella-(Ella/Bella/Mella sometime Smella) 2 yrs (hearing impaired)

We are a foster home that adopts special needs children

We didn't plan on doing special needs foster care till the call for Jason came in out of the blue saying we have a "3 month old baby boy with deformed hand and a really bad cold" could you take him. We couldn't get there fast enough
Turns out he was one sick little baby. We found this out years later when a nurse came up to me and said does your son have a deformed hand? I said yes she said "I can't believe he is still alive we did the death watch on him the night he was taken from his bio-mom"
Jason has Primary immune deficiency, Holt Oram syndrome (his deformed hand) a minor heart condition and bad bad lungs (he turns blue a lot)
He has had 9 surgeries so far including 2 huge ones to give him a thumb. His left thumb had no bones or muscles in it so at 12 months they took his index finger and made him a thumb with it. Then at 6 yrs old he needed a muscle transplant to give it more strength. He still gets mad it doesn't do what he wants it to do and his arm is shorter then the other one. We call it his "Mickey Mouse hand" since he only has 4 fingers too
He has spent more time then I want to think about hooked up to a IV pole.
He had 3 PICC lines in before he was 3 yrs old.
On his Adoption day the Judge was freaked out because in comes this little boy, a month shy of his 3rd birthday hooked up to a IV pack that he wore in a little clear backpack. We were scared he wasn't going to grant our adoption since he kept asking us if we knew what we were getting into.
Jason got his port in right before he turned 5 and has been doing IGG treatments every 21 days ever since.
He has been doing really well the last 12 months so we decided to put in for his wish trip and we got notice 3 weeks later we was approved (plus we were waiting for our sibling group of 4 to go home they were here for almost a year and left the week I sent in the paperwork)
I have been living on this site ever since.

We hope to hear in the next 2 weeks if Grandma can come as his PCA and our dates to travel.
Grandma and grandpa plus my husbands sister are all planning on coming
Does anyone know how that work? Can they come to the GKTW to hang out with us and help us?
Yeah!!! I found your pre-trippie!! This is so exciting! You guys are going to have a blast.

GKTW will only house the actual wish participants. But your family is allowed to come visit, play, even eat! I think they may charge each family member that is not part of the Wish family $1.00 per meal to eat. Pretty good deal, huh!
Here is a link to a TR that a grandmother of one of the wish kids put together. They had half of them staying at GKTW and the other half staying at a Disney resort...
Link to Karlyn's Trip Report

Hope that helps some!

Did you see the answer to the stroller as a wheelchair question on the Wish Trippers thread?
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Old 10-30-2008, 09:48 PM   #6
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What a wonderful family!!! I can't wait to read more about you guys and your trip!
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Old 10-30-2008, 10:14 PM   #7
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Beautiful family!!! Jason is such a trooper! Nick has "only" had 5 surgeries but 4 of them were before he was 9 months old, the last being at 18 months old and numerous, endoscopies, bronchoscopies and colonoscopies. What a wonderful family, I can't wait to get to know you all better.
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Nick's pre-trip report - http://www.disboards.com/showthread....8#post28150528
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Old 10-31-2008, 06:22 AM   #8
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I found it too.....on board for the duration

You obviously all have a very busy life and must need the trip just as much as Jason

When will you know whether your adoption of Christian has gone through?

Mandy
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Old 10-31-2008, 07:41 AM   #9
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What a beautiful family you have!!! I can't wait to hear more about your plans!
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Old 10-31-2008, 08:47 AM   #10
tinytreasures
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Quote:
Originally Posted by llurgy View Post
I found it too.....on board for the duration

You obviously all have a very busy life and must need the trip just as much as Jason

When will you know whether your adoption of Christian has gone through?

Mandy
we have no idea
we got him at birth and he will 7 on monday the hang up is we are white and he tribal.
We are allowed to travel for the first time ever so that is a huge thing here
I emailed our lawyer asking to get this over with before our trip we will see

Maroo thanks for the link and info that made my day
so grandma/ grandpa and auntie can hang with us they just need their own place to sleep that perfect for us
We can handle the kids on our own overnight it is the getting them out in public thing that is a little hard

Amy I lost count of how many times he was under for the little things
if I had to guess it would be over 20 times
his first surgery was at 9 months old for a "cyst" on the roof of his mouth
they had never seen anything like it and the doctor that did the surgery came out with the biggest smile on his face the first thing he said was I was so sure it was cancer but it was just a cyst. I should have known then that it was going to be a LONG ride with him
Every time he got a new tooth we had to go in and have it lanced because it got infected, they would lance it and a whole tooth would be there
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Old 11-03-2008, 08:56 AM   #11
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There are twins on Noah's baseball team who are tribal.. the were adopted along with their two sisters and I know that it took a very long time for the adoption to be finalized. I hope that Christian's come thru soon.
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Kayla, Noah and my wish child Nicholas .

Nick's pre-trip report - http://www.disboards.com/showthread....8#post28150528
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Old 11-05-2008, 01:28 PM   #12
tinytreasures
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talked with our wisher granter today
they are still waiting to hear back from the doctor
we decided to go a day early so we can get the kids settled a little before everything starts
we will pay for a night in a hotel

what is your favorites around GKTW?
we want something with pool so the kids can swim
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Old 11-05-2008, 06:07 PM   #13
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I know exciting waiting to hear for the pieces to come together.
You have such a wonderful family.

Most likely you would need 2 rooms. I think most hotels have a limit of 4 people to room from what I experinced. If you need help I'm pretty good at using different travel methods to get rooms in that area for 50-60 staying at
a nice resort probaly a radission on 192.


http://www.disboards.com/showthread.php?t=1958228
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Old 11-07-2008, 07:26 PM   #14
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Wow! What a wonderful family! Can't wait to hear more! Sounds luke all of you need a fun time!

Quote:
Originally Posted by tinytreasures View Post
I am so excited to be a part of this forum, you have all made me feel so welcome

Cast members
Kathleen-me mom to 41 so far waiting for the phone to ring with more
Loren-best husband and daddy everyone that comes in our door
Jason- 10 yrs old wish child
Avyella- 8 yrs (22 week preemie with CP and blind in one eye)
Christian 7yrs (FAS)
Hayden 4 yrs (arthritis)
Isabella-(Ella/Bella/Mella sometime Smella) 2 yrs (hearing impaired)

We are a foster home that adopts special needs children

We didn't plan on doing special needs foster care till the call for Jason came in out of the blue saying we have a "3 month old baby boy with deformed hand and a really bad cold" could you take him. We couldn't get there fast enough
Turns out he was one sick little baby. We found this out years later when a nurse came up to me and said does your son have a deformed hand? I said yes she said "I can't believe he is still alive we did the death watch on him the night he was taken from his bio-mom"
Jason has Primary immune deficiency, Holt Oram syndrome (his deformed hand) a minor heart condition and bad bad lungs (he turns blue a lot)
He has had 9 surgeries so far including 2 huge ones to give him a thumb. His left thumb had no bones or muscles in it so at 12 months they took his index finger and made him a thumb with it. Then at 6 yrs old he needed a muscle transplant to give it more strength. He still gets mad it doesn't do what he wants it to do and his arm is shorter then the other one. We call it his "Mickey Mouse hand" since he only has 4 fingers too
He has spent more time then I want to think about hooked up to a IV pole.
He had 3 PICC lines in before he was 3 yrs old.
On his Adoption day the Judge was freaked out because in comes this little boy, a month shy of his 3rd birthday hooked up to a IV pack that he wore in a little clear backpack. We were scared he wasn't going to grant our adoption since he kept asking us if we knew what we were getting into.
Jason got his port in right before he turned 5 and has been doing IGG treatments every 21 days ever since.
He has been doing really well the last 12 months so we decided to put in for his wish trip and we got notice 3 weeks later we was approved (plus we were waiting for our sibling group of 4 to go home they were here for almost a year and left the week I sent in the paperwork)
I have been living on this site ever since.

We hope to hear in the next 2 weeks if Grandma can come as his PCA and our dates to travel.
Grandma and grandpa plus my husbands sister are all planning on coming
Does anyone know how that work? Can they come to the GKTW to hang out with us and help us?
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Old 11-07-2008, 08:09 PM   #15
maroo
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Quote:
Originally Posted by tinytreasures View Post
talked with our wisher granter today
they are still waiting to hear back from the doctor
we decided to go a day early so we can get the kids settled a little before everything starts
we will pay for a night in a hotel

what is your favorites around GKTW?
we want something with pool so the kids can swim
I have no idea...but DON'T stay at the Best Western on 192...!!!!!!
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