Caleb's Wish trip!

[maroo]

I remember reading you called that morning and got in! We might just keep trying!

I actually asked Caleb if he wanted to eat with the characters and he no, not really....but the girls really wanted to....so either way will be OK!

I hate to spend over $100 for a meal...but this is once in a lifetime...right???

That is true!

But the buffet is pretty "normal" food...not fabulous (especially for that kind of money!)...and they will have seen the characters several times.

We would have skipped Chef Mickeys (and didn't plan to eat there, honestly)...but we missed the character pics at GKTW because that is the day she was sick. So we caved.

I think you are right...once in a lifetime! but you will be ok either way!

I remember asking the kids SO many questions before we went and we missed half of what I told them we would do/see...and they did not honestly know the difference!! They had a ball. And they didn't set foot in either AK or Epcot.

 

[DisneyMom5]

Just wanted to let you know I'm reading your report!

My son (now 7.5) had to have several emg's due to a brachial plexus injury. Not fun!

Hope you get some answers soon, so you can focus on your trip planning!

 

[rosedolph]

Tiffany,
I have really enjoyed getting to know your family a little better - and I am so excited that you guys get to go to Disney World! In fact we will be there the same time (May 9 - 16)! I have a 4 yr old daughter and a 2 yr old daughter. And this trip is all we can talk about.
Anyway just wanted to let you know that you and your family are in our prayers - Melissa

 

[WishMom09]

Just wanted to let you know I'm reading your report!

My son (now 7.5) had to have several emg's due to a brachial plexus injury. Not fun!

Hope you get some answers soon, so you can focus on your trip planning!

Thank you! We are ready for some answers! And we are SOOO excited about our trip! 2 more months!!

 

[WishMom09]

Tiffany,
I have really enjoyed getting to know your family a little better - and I am so excited that you guys get to go to Disney World! In fact we will be there the same time (May 9 - 16)! I have a 4 yr old daughter and a 2 yr old daughter. And this trip is all we can talk about.
Anyway just wanted to let you know that you and your family are in our prayers - Melissa

Thank you Melissa! We appreciate the prayers!! How neat we will be there at the same time! Maybe we will run into each other!
Do you have a PTR going?

 

[LeeLee2U]

Hi everyone!

I decided I would give this a shot!

Let me introduce my family!

My name is Tiffany(37)! I am the lucky wife (of almost 15 years) to Tom(39).
And the loving mom to Emilee (12), Caleb (8-wish kid), and Aubree (3...almost 4).

A little about Caleb....Caleb was born 10/5/2000 with bilateral hip dysplasia. He was 22 1/2 " long. And we were told that was probably the reason for the hip dislocation....just not enough room in the womb. He was immediately put in a brace to hold his hips in place. He wore different braces for 11 months....so he was flat on his back for 11 months~ so his head was flat on the back. Then we got a DOC band to correct that.

After finally getting out of the braces and becoming a little mobile. He learned to sit up and tried to crawl. He never really learned to crawl the normal way...he was more like a bull dozer with his head scooting across the floor. So he always had a carpet burn on his forehead!

It wasn't long before he tried out walking and that was much faster for him!
He was just always slow to meet physical milestones. He was very floppy and weak. But mentally he was fine!
I would ask the Dr every visit...WHY??? And his answer was always "that is just the way Caleb is". He has no syndrome or disease. We also saw a neurologist..same answers there. Just the way Caleb is!
But that just didn't seem right to me! He was always falling and so weak!
He couldn't climb stairs...and had a hard time getting up off the floor!

So fast forward to age 7......we live in a small town and were always going to Dallas to the Dr. Well we got a new ped in town. So I thought I would try her out. She wasn't satisfies at the "just the way Caleb is" answer.
She referred us to a new neurologist at Children's hospital.

We spend 5 hours there the 1st time. She wanted to run several tests..including a terrible test(can't remember the name) to determine if it was a nerve problem or a muscle problem. The put needles in his muscles to watch their reaction! It was so painful for him. But were narrowed it down to a muscle problem. So now we know it is a form of Muscular dystrophy. There are 43 types of MD. SO next he had a muscle biopsy to determine the type he had. We were hoping for a slow progressive form...or non progressive form. Well they didn't get enough muscle to for sure determine.
I was so ready to know which type he had to prepare myself for what was ahead!
So now we have to have another muscle biopsy ...this time in his arm.

He has been such a brave boy through all of this. He never even cried after the biopsy~ If they had cut a 2 1/2 " gash 2" deep in my leg I would have cried!!
He wears braces on his legs to help strengthen his ankles to help prevent falls. He was even excited to wear these...until some kids made fun of him!
But he has such a sweet spirit and an awesome attitude....very positive!
He even said the other day "If I have to get a wheelchair I want those light up wheels on them".

He seems to have gotten worse over the last year or so....he can hardly get up out of the tub and has trouble getting into my van. Buy we just take it a day at a time and thank God for each day we are given! Some forms of MD would mean that he would not make it to 18. Or would be in a wheelchair by 18. So we are very thankful that he is not there yet.

Sorry this was so long winded!! I got carried away!

But on to the wish....I got a call on 2/6 telling us that Caleb was chosen to have a wish granted from Make a wish! I was beyond excited!
Caleb has been wanting to go to Disney World for a long time!

We really want to go May 9th (that is what the ticker shows) .....hoping that is when they will let us go! We are waiting to meet with our wish granter!

I love reading everyone's trip reports! I have learned so much from you all!!

O.k I'm trying tp slim down my sub list on these TRs but getting back on the wish thread is not helping any!!!!
I've just read the first page but i wanted to reply to this before I read any more.

We are also from Texas. In fact my son got his wish from the Texas Wishing Well. Braeton is 6 and cerebral Palsy, an unknown metabolic issue, Migraines, Leukamalaysia and the list goes on.... Anyway Braeton also had a muscle biopsy and the other day was trying to blame his scar on the cat!!! He's a little toot! Neurology can not really figure Braeton out. We know he has CP but the way his muscles flop back and forth is not a CP thing yet none of the Gajillion test have given us a complete answer. But that is o.k. We'll just keep on doing the best we can while spending a lot of time in prayer!!!

Anyway Braeton has a wheelchair with Light up wheels. It's really cool. it got him a lot of attention at Disney. All the kids wanted a chair with light up wheels!!! He only uses it for long distances or on those really tough days. He never uses it in the house and very rarely at school these days. i was scared of getting him a chair at first. Scared that he would rely on that and not be as mobile. But in his case it actually helps him be more mobile. Because when he will use the chair when he's tiring it saves his strength and then he can get up and around more.

Are Calebs Braces plain or was he able to get a design on them?? Braeton doesn't want to wear his very much anymore but that's only because he outgrew his for a while and he like the nonconstrictive feel!!! most of the kids at school always like to see what his braces look like when he gets new ones!! I always let him get designs on them.

he did have some trouble last year with some kids and then this year with one child in his classroom. Last year he was in kindergarten and a 2nd grader decided to bully him. This child was in my oldersons classroom and started whispering in T's ear Your brothers a cripple. Handicapp Handicapp HAN DI CAPPED and then woulld mimic Braetons walk as Braetons class would pass them everyday at Lunch time. It was getting really bad. T was getting so upset he would come home with blood on his hands where he had cut grooves in his hands from clenching his fist so tight. One day Braeton looked up at him and said. God made ME special and He loves me very much!! And I can do ANYTHING I want to as long as I have the Want to and I Never Give Up and just went on down the Hall! The other kids finally spoke up and between nobody laughing at the bullya nd the teacher realizing what was going on it finally stopped.

Braeton know that people don't always understand but he explains to his class each year at the beginning of the year and then just goes on with life. He may not be able to do everyting the same way as everyone else but I've always told him he can do anything he wants with some modification of course. Of course this has led me doing several things that we probably won't ever do again including ice skating in Galveston!!!! But hey he did it once!!!

Can't wait to keep reading!!!!

 

[WishMom09]

Thanks so much for your response!

Caleb's braces are plain...we were not offered the design kind!
He hasn't been wearing them lately because they seem to be "holding him back"...especially in PE. He would have to sit out because he couldn't do the activities because of the braces. So we decided (with the Dr's approval) that we needed to only wear them at night for now.

I am sorry to hear you are still waiting on answers as well...that is so hard!
But we just take it a day at a time and thank God for that day we are given!

So cool that your son has the light up wheels! Hope he can continue to only use the chair as needed!

Sounds like your son also has a great attitude about his situation! Isn't that awesome? They seem so understanding about their limitations.
I just wish kids weren't so mean!

Thanks again for responding!

 

[LeeLee2U]

I think one thing that helps Braeton is that he has been wearing Braces since he was 2. Also Braeton was completly chair bound until he was 3 and then he could use a walker but had no standing alone much less walking alone skills. He stood up in Childrens church one morning completly unassisted (I was there!!) and then took 6 steps turned around and started testifying about stuffed animals and imaginary friends!!
Since then God has touched his mind, his eyes, and he can even jump about 2 inches off the floor without falling with or without his braces!!! So for Braeton what he's doing now is a miracle and he tells everyone about it.
I'm going to be praying for Caleb. I also have a 9 year old son and the grades they are in are difficult enough without mean kids.
One thing that is really great about our school district is we have excellent Lifeskills and multihandicapped classes and they mainstream them as much as possible. This means that all of our kids have been exposed and around all types of needs and learning levels. Also most of these kids were there when Braeton came to school one day in a wheel chair and then the next he came in and walked down the hall alone!!! The majority of the kids are helpfull but there are always a few bullys. I'll be praying God gives Caleb the right way to handle this that can turn into a good thing for Caleb!!

 

[WishMom09]

I think one thing that helps Braeton is that he has been wearing Braces since he was 2. Also Braeton was completly chair bound until he was 3 and then he could use a walker but had no standing alone much less walking alone skills. He stood up in Childrens church one morning completly unassisted (I was there!!) and then took 6 steps turned around and started testifying about stuffed animals and imaginary friends!!
Since then God has touched his mind, his eyes, and he can even jump about 2 inches off the floor without falling with or without his braces!!! So for Braeton what he's doing now is a miracle and he tells everyone about it.
I'm going to be praying for Caleb. I also have a 9 year old son and the grades they are in are difficult enough without mean kids.
One thing that is really great about our school district is we have excellent Lifeskills and multihandicapped classes and they mainstream them as much as possible. This means that all of our kids have been exposed and around all types of needs and learning levels. Also most of these kids were there when Braeton came to school one day in a wheel chair and then the next he came in and walked down the hall alone!!! The majority of the kids are helpfull but there are always a few bullys. I'll be praying God gives Caleb the right way to handle this that can turn into a good thing for Caleb!!

WOW! What a miracle! How AWESOME that Braeton is improving!
Praise God!
We are very thankful that Caleb is doing so well.

 

[WishMom09]

Well I decided to do something special for my girls...I made reservations for breakfast at Akershus with the princesses. It is for 8:10 Hope we can get our hiney's out of bed!!!
I sure hope We do get to see Goofy @ GKTW!

 

[LeeLee2U]

Just for your info. If there is a certain character that ya'll want to see. tell them in Guest relations when you first enter the park that it is Calebs wish trip and he REALLY" want s to see ..... 9 x out of 10 they will be able to point you to a certain place.
A CM told us at DHS that if you want to see a character out of the Beuty and the Beast show that it is possible but you have to let them know at Guest Relations right when you enter the park. Only certain characters are allowed to meet because of their costumes etc.... Some of them have to immediatly change depending on how long they've been in them. Also it is their choice. But Gaston and Belle are usually accomadating. We didn't know we would need to ask early so we missed out but i got as much info as possible so I could pass it along!! I have heard that Gaston is one of the best to meet. That he really gets into character!!
Goofy was also pretty accessible at AK so you might want to try asking there if it doesn't work a MK but I can't imagine it not.

And yes USE those magic words WISH TRIP! It is a once in a life time trip. I too had a hard time using it at first but I listened to those who had went before me and I'm so glad I did. We even got towait in the VIP section of the parade at MK just because we told a photographer about our WISH trip. (She had noticed our WISH shirts!) A lot of the characters made a special visit to BRaeton!!
Braeton really wanted to see Mickey and when a CM in front of Mickeys house heard that and saw his WISH button we were granted an extra long private meet and greet with Mickey!!

Don't feel bad. The majority of people their that realize you are on a WISH trip WANT this for you. Ya'll deserve this little bit of time to just HAVE fun!!!!!

 

[WishMom09]

The days sure are moving S>>L>>>O>>>W!
Maybe it is the weather...it went from being sunny and 80 to raining and 40!
Maybe it is because I keep reading more and getting more EXCITED!
Next week is our spring break! Hope the weather improves!
We are going to visit the in laws this weekend. Maybe that will at least speed things up a bit!

 

[maroo]

The days sure are moving S>>L>>>O>>>W!
Maybe it is the weather...it went from being sunny and 80 to raining and 40!
Maybe it is because I keep reading more and getting more EXCITED!
Next week is our spring break! Hope the weather improves!
We are going to visit the in laws this weekend. Maybe that will at least speed things up a bit!

Ah...enjoy these slow days...especially the ones that are pre-wish trip...all the anticipation...enjoy it!! It goes by fast in the end.

And I echo you on the weather. I have been praying for rain for days now (here in MS)...I just want some rain. We had a "dust" storm yesterday and it was completely YELLOW! ICK! I really don't like pollen.

I am getting excited for you guys, too!!!

 

[LeeLee2U]

Ah...enjoy these slow days...especially the ones that are pre-wish trip...all the anticipation...enjoy it!! It goes by fast in the end.

And I echo you on the weather. I have been praying for rain for days now (here in MS)...I just want some rain. We had a "dust" storm yesterday and it was completely YELLOW! ICK! I really don't like pollen.

I am getting excited for you guys, too!!!

We needed the rain but i really wish it wouldn't have been like this. It started raining last night as the Temp got lower. So it's cold and wet and the boys are sick and I have a TON of things i need to take care of but don't want to take the kiddos out in this. But HEY at least we finally have rain. Hopefully it'll head ya'lls way Maroo!!

And it feels slow now but believe me it's fixing to fly by!!!

 

[jham]

That was GREAT info...and NO spillage!! I would LOVE a planner! That would really help me! As I am feeling overwhelmed! So please send me one!!
I know we will also have to take breaks! I asked in a post somewhere (can't remember where!) about the double strollers in the parks. I am hoping Caleb can fit in one!
Thanks again Maroo, for your awesome info!

I'm saving the story for my trip report, but let's just say I can tell you a few things about the rental strollers.
These are not the most adorable pics of my kids, but they are the most helpful stroller pics I have.

This is my very tall DS9 (about 57") in the double stroller: (and no, he's not in pain, he just doesn't like his brother's driving skillz).

This is my DD3 and DS6:

And just for scale, my 30ish sister and my DS6

OK...so I am beginning to really read info about the different parks and I am thinking I really would like to have 4 days for the Disney parks....1 day for each 1. And not sure about going to the Universal parks or Sea World at all???

With 7 places to see and really only 6 days to see them...how do you do it?
I know I have read lots of TR's where people have done more than 1 park in a day. Maybe that is the best answer.

But my question for you who have been there and done that....which park would you omit?

And are the Universal park tickets GKTW gives you park hopper tickets? Between US and IOA?

I don't know how you'd pick which park to leave out because you never know what your kids will fall in love with. I really enjoy epcot and was surprised at the end of my trip that my DS9 informed me it was his favorite park. I LOVE AK and wouldn't miss it. MK is my favorite and my kids wouldn't miss ToT and RnR at DHS. You will find everyone has a different opinion!

Well I decided to try and get an ADR....not any luck!
I tried for either breakfast at Tusker House or Chef Mickey.
Or dinner at Chef Mickey. (since he loves Goofy and Mickey)

I wondered if I told them it was his Wish trip would help??
I didn't try....kinda feel guilty about doing that!

We loved breakfast at Tusker House! The food was good and it was fun! We also love Chef Mickeys. Fortunately though, Goofy is one of the easier characters to find so I'm sure you will! Please let them know that is your DS's wish and I'm sure they will make sure it happens!

 

[WishMom09]

I'm saving the story for my trip report, but let's just say I can tell you a few things about the rental strollers.
These are not the most adorable pics of my kids, but they are the most helpful stroller pics I have.

This is my very tall DS9 (about 57") in the double stroller: (and no, he's not in pain, he just doesn't like his brother's driving skillz).

This is my DD3 and DS6:

And just for scale, my 30ish sister and my DS6

Thanks so much for the stroller pics! That really helps!
I can't wait to read your TR stroller story!

Do the strollers have a storage compartment?

 

[WishMom09]

Well I am sooo excited I went shopping this weekend and found my bag to carry to DW! I think it looks like Minnie Mouse dots!!

AND...it was only $9.99 at Ross!

I also bought the kids carry on size bags.

I figure we will just carry 2 large suitcases there and pack carry on bags for each of us to use on the way home! We might need to carry 3 suitcases???
I am just thinking about the $15 a piece baggage fee!

 

[maroo]

Well I am sooo excited I went shopping this weekend and found my bag to carry to DW! I think it looks like Minnie Mouse dots!!

AND...it was only $9.99 at Ross!

I also bought the kids carry on size bags.

I figure we will just carry 2 large suitcases there and pack carry on bags for each of us to use on the way home! We might need to carry 3 suitcases???
I am just thinking about the $15 a piece baggage fee!

Hmm...

I would bring 3 suitcases. Bring a duffle that you can pack into your suitcase and use only if you need it. A strong duffle.

 

[jham]

Well I am sooo excited I went shopping this weekend and found my bag to carry to DW! I think it looks like Minnie Mouse dots!!

AND...it was only $9.99 at Ross!

I also bought the kids carry on size bags.

I figure we will just carry 2 large suitcases there and pack carry on bags for each of us to use on the way home! We might need to carry 3 suitcases???
I am just thinking about the $15 a piece baggage fee!

I LOVE that! I have a slight obsession with what we disboutiquers call "Minnie Dot".

Thanks so much for the stroller pics! That really helps!
I can't wait to read your TR stroller story!

Do the strollers have a storage compartment?

They have a big pocket that goes across the whole back. I think it may have been divided into two pockets. It's flat but you can fit a lot of stuff in it. There was some sort of cup holder action as well. I'll send you a picture of the back if I find one.

 

[WishMom09]

Since this is our Spring Break we are having a Disney Movie marathon!
So far we have watched Cinderella and the new Disney Tinkerbell. Tomorrow is Beauty and the Beast. Then I hope to rent Snow White. Aubree is getting Sleeping Beauty for her birthday Saturday! ( she is her fav princess)
Poor Caleb is on Princess overload! But he secretly loves it!!