Jonah's wish trip *pictures added*

[bex271]

I have been reading a lot of tr and gotten addicted to them so there for i'm going to try and do a ptr so please bare with me. We are leaving in a little over 4 months and hopefully this will help pass the time too.
We are getting to to disney world through a wonderful foundation Make A Wish (MAW). We are going for our one and only child, Jonah, who is 4 1/2 years old. We are going Nov 20-26 and can't wait. We are getting to to stay at Give Kids The World.

Our cast of characters:
DH:Kristian
Me:Becca
Ds:Jonah

Next post I'll give more info about Jonah (our miracle child) and how he got the wish.

becca

 

[Bill_Lin]

Yeah!

I am the first one to post on your thread. You have done a great job Becca. Excellent in fact.

We look forward to reading more about Jonah. What are the main things he wants to do?

Bill

 

[bigdisgrandma]

Welcome, we are glad to have you join us and can't wait to hear about your wonderful Jonah and his wish.

Denise

 

[Iluvmickeymouse!]

Yay another TR!!!! I am so thrilled to have another one to read!!!! My DH on the other hand...not so much!

 

[bex271]

Yeah!
I am the first one to post on your thread. You have done a great job Becca. Excellent in fact.
We look forward to reading more about Jonah. What are the main things he wants to do?
Bill

since you asked me about it, it's only fair your the first

Welcome, we are glad to have you join us and can't wait to hear about your wonderful Jonah and his wish.
Denise

Thanks for the warm welcome and i can't wait to tell his story

Yay another TR!!!! I am so thrilled to have another one to read!!!! My DH on the other hand...not so much!

I'm hoping i can do my own and keep up with the TR i'm reading. I'll be on forever.

 

[bex271]

Now that the little guy is snug in bed. I actually have more then 5 mins to talk about him.

Jonah is 4 1/2 years old. He was born with treacher collins syndrome which is a cranial facial disorder. We knew he was going to have surgeries but we didn't know what that road was to lead us down. He was doing fine until he was a month old, at that time he suffered from a full respiratory arrest and was down for 45 mins. We weren't sure what his future at that time was going to be, it was meek to say the least we didn't get the reports. He was in a coma like state for 2-3 weeks, but obviously he pulled through or i would be here sharing his story and to make a long story a little shorter he ended up pulling himself off the vent 3 times, after being told that he would be able to live with out one. Well he showed them. He spent 5-6 weeks in the hospital all together. He came home with a trach (just a way to keep his airway open) and g-tube to get his food so he could grow.
He is very delayed but is making progress every day with therapy. He knows a lot more though then he can tell us.

becca

 

[bex271]

A while back another mother had told me about MAW and told me i needed to contact them, at the time Jonah was way to young to qualify for a wish.
Well, last year as he had hit a quite few goals in therapy, his therapist suggested again that we contact MAW. He is nonverbal and at the time was just learning to use a simple device to choice colors so we talked to our volunteers (granters) for a while and of course he fell asleep during the interview. He loves to be stimulated, he likes lights and sounds and we are able to get his equipment and special things he needs through a local charities. So we decided what could be more stimulating and fun for him and get us away from therapy and doctors appt and let him be a kid more then going to Disney World and all his therapist wanted him to go too. It took a lot longer to get his wish granted then we had expected. We got the approval in march, which was a welcomed surprise because he had just gotten out of the hospital from and awful infection he had gotten post baha surgery. We had to pick our dates again and we are going for his 5th birthday. After he had healed from his infection and surgery we finally got to come home.
His speech therapist had just gotten back for DW and showed him picture of her kids and donald, he just grabbed for the picture (huge hurdle for him) and just about snatched it out of her hands so he could see it better, at that time i knew we had made the right choice.
I'm giong to leave off right there and get some shut eye. There is a lot i haven't told y'all about him but in due time, and i'll post pictures next time maybe.
Oh I almost forgot, the reason he got the wish is because of his airway issue is the main reason but he has other medical issues too.

Becca

 

[Bill_Lin]

Be honest now, Becca, I did not ask you about doing a TR, I nagged you ruthlessly

Thanks so much for sharing. Each of us adds a little light here, like a single candle. When we all shine together by sharing our stories and thoughts and dreams, a BRIGHT light appears for all of us.

Your story is so touching. WOW! The part about the picture speaks so clearly. I am deeply moved and excited for Jonah. He is going to have a BALL!!!!
Bill

 

[bex271]

Be honest now, Becca, I did not ask you about doing a TR, I nagged you ruthlessly
Thanks so much for sharing. Each of us adds a little light here, like a single candle. When we all shine together by sharing our stories and thoughts and dreams, a BRIGHT light appears for all of us.
Your story is so touching. WOW! The part about the picture speaks so clearly. I am deeply moved and excited for Jonah. He is going to have a BALL!!!!
Bill

I wouldn't say ruthlessly. I love sharing his story because he is my only and he's been through so much. When he took the picture we started laughing and crying because at that we knew he understood what was happening.

He is considered legally blind, but does so much even without his glasses that i have a hard time believing it sometime like with the pictures.
We know he sees colors, lights, shapes, and movement we just don't know what kind of detail he sees.

We think he's going to have a ball, he has the only child syndrome he thinks he should always be center of attention so from what i've read on here of how the wish kids are treated it's going to be right up his ally.

becca

 

[bex271]

Since we were lucky enough to have our dates over 6 months in advance we were able to do decide somethings but it's hard not knowing what time your flight leaves or returns, but we do have our adr and our mvmcp tickets.
Here is what we have so far.

Nov 20- We're flying down (don't know what time and it's killing me)
Nov 21- Magic Kingdom, lunch at crystal palace and MVMCP
Nov 22- Sea World
Nov 23- Universal Studios
Nov 24- Epot
Nov 25- Animal Kingdom/ DHS also his 5th birthday
Nov 26- Coming home
More planning details coming up but gotta go get the day started. This thing is addictive.
Becca

 

[GoofyDoo]

Awesome--another PTR!! I hope to get to go near the holidays some day! Won't he have tons to see--y'all will have a ball! Waiting for more...

 

[Native NYer]

I'm joining in! What a touching story. I'm so glad Jonah got his wish and will be visiting Disney in a few months. Your plans look great so far. Jonah's going to have a very memorable trip! I hope you'll do a trip report when you return.

 

[bex271]

Awesome--another PTR!! I hope to get to go near the holidays some day! Won't he have tons to see--y'all will have a ball! Waiting for more...

Thank you for joining us I'll get more later but had a second while he's watching tarzan and before have to go to therapy.

I'm joining in! What a touching story. I'm so glad Jonah got his wish and will be visiting Disney in a few months. Your plans look great so far. Jonah's going to have a very memorable trip! I hope you'll do a trip report when you return.

Thanks for joining us. I'll do a tr when we get back. I wish there was a way to speed time up.

becca

Here is a quick picture of him after we asked about him seeing goofy or donald i can't remember.

the date is wrong the picture, this was taken about 2 or 3 weeks ago

 

[bex271]

Magic Kingdom:
Crystal Palace 2:10 adr
jungle cruise
Many adventures of winnie the pooh
Buzz Light year ranger spin
meeting characters
Mickey's Very Merry Christmas Party
anything else we can do while we're there


Epcot
Figment into you imagination
The seas with Nemo and friends
Turtle talk
Imagination Pavilion
World Show Case for some shopping

DHS
Toy Story Mania
Playhouse Disney Live
Lights, Motor, Action Stunt Show
Al's Toy Barn
Maybe Fantasmic

Animal Kingdom
Kilimanjaro Safari
Festival of the Lion King
Finding Nemo- The Musical

That's what we have right now and with our trip being a few months away i'm sure it can and will change.

We want to leave a lot of time open for him to meet the characters and take in everything around him and be able to relax.

We are splitting DHS and Animal Kingdom into one day and that is also his 5th birthday.

I haven't gotten sea world and Universal/IOA figured out yet so any suggestions on these would be great. We aren't big thrill ride seekers but Kristian has never been to Universal/IOA and i haven't been in since i was in high school ( not giving that one away). Neither one of us have been to sea world but really looking forward to going.

Well, that's all i have for right now and it's time for Jonah to get his feeds and wake up from his nap.

becca

 

[bex271]

I didn't realize how schedule orientated i am until yesterday. I totally forgot that jonah's therapist and her staff had taken the week off. So we drive the hour it takes to get there to an empty place no cars or vans or trucks nothing. I look over and the horses are running free. Strange eerie feelings and then it dawns on me oh yeah they aren't here this week I have never felt sooo stupid as i did yesterday.

becca

 

[bigdisgrandma]

I didn't realize how schedule orientated i am until yesterday. I totally forgot that jonah's therapist and her staff had taken the week off. So we drive the hour it takes to get there to an empty place no cars or vans or trucks nothing. I look over and the horses are running free. Strange eerie feelings and then it dawns on me oh yeah they aren't hear this week I have never felt sooo stupid as i did yesterday.

becca

Oh My Goodness, I have done that myself. I just thought it was because I am a grandma and old (56). I guess it is because like you I am a true creature of habit. Hope it was a nice drive for you though.

Have a great weekend.

Denise

 

[Bill_Lin]

Magic Kingdom:
Crystal Palace 2:10 adr
jungle cruise
Many adventures of winnie the pooh
Buzz Light year ranger spin
meeting characters
Mickey's Very Merry Christmas Party
anything else we can do while we're there

Pirates, Peter Pan, Snow White, Monstery's Inc, are pretty cool, but I am not up on accessibility issues.

Epcot
Figment into you imagination
The seas with Nemo and friends
Turtle talk
Imagination Pavilion
World Show Case for some shopping

I like Ellen's energy adventure. If you like Chinese Food, the Lotus Blossum Cafe is great, quick and economical. How about Space Ship Earth?


DHS
Toy Story Mania
Playhouse Disney Live
Lights, Motor, Action Stunt Show
Al's Toy Barn
Maybe Fantasmic


Beauty and the Beast and Voyage of the Little Mermaid are cool shows. Do they still have Muppet 3-D?

Animal Kingdom
Kilimanjaro Safari
Festival of the Lion King
Finding Nemo- The Musical

How about the Train Ride to the exploration station?

That's what we have right now and with our trip being a few months away i'm sure it can and will change.

We want to leave a lot of time open for him to meet the characters and take in everything around him and be able to relax.

We are splitting DHS and Animal Kingdom into one day and that is also his 5th birthday.

I haven't gotten sea world and Universal/IOA figured out yet so any suggestions on these would be great. We aren't big thrill ride seekers but Kristian has never been to Universal/IOA and i haven't been in since i was in high school ( not giving that one away). Neither one of us have been to sea world but really looking forward to going.

Sea World will be great for you. There is so much to see there. Don't miss the penguins, manatees, arctic area, Seal Show, Whale Show, Dolphin Show. At Universal- Shrek 3-D is so cool. The following rides, if accessible would be great, ET (awesome for kids), Men in Black. At IOA- Cat in the Hat (like Winnie the Pooh), Seuss Trolley, One Fish Two Fish, Caroseussal, Poseidon, Cartoon area.

Well, that's all i have for right now and it's time for Jonah to get his feeds and wake up from his nap.

Sorry about the long trip you made for nothing. Thanks for making all of us with memory issues feel better.

becca

Bill

 

[bex271]

Denise,
Creature of habit yes. old-no and i'm glad to know that i'm not the only one that has done this either.

becca

 

[bex271]

These are on our to do after our "MUST DO LIST"
Pirates, Peter Pan, Snow White, Monstery's Inc,

Ellen's energy adventure. If you like Chinese Food, the Lotus Blossum Cafe is great, quick and economical. How about Space Ship Earth?

Beauty and the Beast and Voyage of the Little Mermaid are cool shows. Do they still have Muppet 3-D?

How about the Train Ride to the exploration station?


Thank you for this list I'm going to start working on these list soon and this is a great start.

Sea World will be great for you. There is so much to see there. Don't miss the penguins, manatees, arctic area, Seal Show, Whale Show, Dolphin Show. At Universal- Shrek 3-D is so cool. The following rides, if accessible would be great, ET (awesome for kids), Men in Black. At IOA- Cat in the Hat (like Winnie the Pooh), Seuss Trolley, One Fish Two Fish, Caroseussal, Poseidon, Cartoon area.


My only problem is going to be timing every thing since we will have to stop every 3 hours to feed jonah and that takes a good 20-30 min. Which will be good any way so we can take a break.

becca

 

[bex271]

I know this has been asked a lot and know about the first aid center and the wish lounge but instead of having to walk back to the front of the parks for diaper changes, what has everyone else done. I've heard not every companion restroom has a changing area. That's something else i'm concerned about.

becca