Caleb's Wish trip!

[WishMom09]

Trip Report

Day 1 http://www.disboards.com/showpost.php?p=31847472&postcount=189

Day 2 http://www.disboards.com/showpost.php?p=31859407&postcount=197
Day 2 cont. http://www.disboards.com/showpost.php?p=31864123&postcount=200

Day 3 http://www.disboards.com/showpost.php?p=31886213&postcount=205

Day 4 http://www.disboards.com/showpost.php?p=31915289&postcount=211
Day 4 cont. http://www.disboards.com/showpost.php?p=31915705&postcount=212

Day 5 http://www.disboards.com/showpost.php?p=31971248&postcount=218
Day 5 cont. http://www.disboards.com/showpost.php?p=31990082&postcount=221

Day 6 http://www.disboards.com/showpost.php?p=32026573&postcount=224
Day 6 cont. http://www.disboards.com/showpost.php?p=32059646&postcount=230

Day 7 http://www.disboards.com/showpost.php?p=32105379&postcount=240

Photopass etc http://www.disboards.com/showpost.php?p=32136930&postcount=247


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!!

 

[maroo]

Woo Hoo!!

You did a great job. I was in the middle of replying when the website went down. Don't they know we are trying to plan trips here?!

Caleb has the best attitude!! And those light up wheels are cool! I just hope he does not need them for quite a while!

You did a great job! I am going to post a link to your thread on the Wish Trippers Unite thread.

If you would like to know how to post pictures, feel free to PM me and I can see if I can steer you in the right direction!

 

[Reese'smom]

Welcome! I'm new here too! Caleb sounds like such a trooper going through all those tests! I hope his trip is great!

 

[MICKEY4EVER!]

Best of luck to you and your family! I'd say that your little boy certainly DESERVES some magic after what he's been through. And to have such a good outlook only proves that he already has quite a bit of magic inside!

Have fun!!!!!!!!!

 

[autumnpalm]

Hey there!

I work with kids who have muscular dystrophy... it is awesome the technology that is available now, but there is still so far to go. It's amazing what little warriors kids can be. They are all much braver than I could ever hope to be!

I really hope you get your trip planned in May... that is when we are going too! Have you been to WDW before? Hopefully you will get to meet your wish granter soon!

Excited to follow along on your family's journey!

 

[WishMom09]

Hey there!

I work with kids who have muscular dystrophy... it is awesome the technology that is available now, but there is still so far to go. It's amazing what little warriors kids can be. They are all much braver than I could ever hope to be!

I really hope you get your trip planned in May... that is when we are going too! Have you been to WDW before? Hopefully you will get to meet your wish granter soon!

Excited to follow along on your family's journey!

I have been to WDW before...in high school. And we went as a family when Emilee was 6 and Caleb was almost 2. SO he doesn't remember it at all!
I am hoping we get things going here pretty soon...I am ready to start planning!

 

[tinytreasures]

Great start to your report I can't wait to hear all about your plans

 

[WishMom09]

Well as for plans....I am not sure where to start!
I really wish we had 4 days for the 4 parks. But I feel so blessed to even have this opportunity I can't complain!
I have never been to Universal studios (either park). But it looks like fun!

Seeing my kids ages (12,8 and 3)...name you fav parks in order you like them....best to least.

Also...since we have Sea World here in Texas we might want to skip that????

Any thoughts or suggestions will be appreciated!

 

[mom_2a_sept_princess]

Welcome!

My DD (5) has a MD, she has Spinal Muscular Atrophy type 2. She had that horrible test, the EMG test. I hated it too. We didn't do the muscle biopsy, instead we did a blood test. With that it was determined that Emma has SMA.

My Emma uses a wheelchair full time. She only walked once in her life (and we have that on tape!). We have been to Disney 3 times with her...she loves it there and is so happy. Here is her website if you want to take a look:

www.emmahopeworld.net

Good luck planning your wish trip!

Amy

 

[3princesses+aprince]

Great start to your pre trip report! Caleb sounds like such a wonderful boy. We are going to Disney for our first time in May. May 12-19!
Can't wait to read more!

 

[maroo]

12, 8 and 3 ... gosh...that pretty much covers the age range, doesn't it!!

I think which park totally depends on what you guys are interested in seeing. We did not even plan to go to AK at all on our trip. We just planned MK, Epcot and DHS - simply based on what was accessible for Lauren and what the kids were interested in.

And we actually only got to MK and DHS. (Lauren got sick...long story.) But we had a GREAT time!!!!! They say this trip was the best of their whole life and don't think there could ever be a better vacation! Even with a hospital stay thrown in!

The kids have no idea what they missed. Our group takes a long time to get from place to place and we have to stop often to rest, do pressure relief from her wheelchair, etc.

So it is very individual. Some families can go and go all day and will be able to get to all 4 parks and get a lot done. Some families have very sick children that have to go just a little while and rest and won't get to as many parks.

All of the parks have things that all ages would enjoy. I think it just depends on what themes they are interested in. I would definitely devote a whole day to MK. You need a full day for that...unless you have been and feel like you have been there and done that.

I should have more info on AK after my trip this week, as I have never been.

Epcot has the World Showcase, which doesn't seem to appeal to most kids...although they do have things for kids to do. But the Future world Epcot is awesome...has some great rides and some other cool things that kids would certainly enjoy. They also have a Wish Lounge (VIP Lounge, specifically) that you guys can rest and get a little special treatment. So I would definitely try to get at least a half day at Epcot.

DHS has a lot of shows...I would just look at those shows and rides and see what they would want to do. Toy story is a great ride and with the magic button, you don't have to wait forever.

Sea World: The main thing we enjoyed was feeding the dolphins. They make sure that any wish child has a good experience with this. It is free. But other than that...if you have done it before, you might want to skip it.

Universal: Never been. But there are a lot of TR's with Universal thrown in. They have cool stuff there that is not at Disney...especially specific characters that your kids may want to see.


GKTW has a lot of activities as well, so make sure you make a little time for that.

I send a "planner" on an excel spreadsheet to all Wish Families...if you want one. FYI for anyone reading this that wants one. It has all of the GKTW activities as well as a general plan of which park you could do on which day...usually I would suggest a long day, then a short day...so if you think one park will be a short day you can put that between two long days so that you can catch up on some rest. You can also schedule a shorter day on the day of the Christmas party and such since most families want to catch that.


Wow...I have talked WAY too much!!! You have gotten the stream of thought from Maroo today! Sorry!!!! Total brain spillage!

 

[WishMom09]

12, 8 and 3 ... gosh...that pretty much covers the age range, doesn't it!!

I think which park totally depends on what you guys are interested in seeing. We did not even plan to go to AK at all on our trip. We just planned MK, Epcot and DHS - simply based on what was accessible for Lauren and what the kids were interested in.

And we actually only got to MK and DHS. (Lauren got sick...long story.) But we had a GREAT time!!!!! They say this trip was the best of their whole life and don't think there could ever be a better vacation! Even with a hospital stay thrown in!

The kids have no idea what they missed. Our group takes a long time to get from place to place and we have to stop often to rest, do pressure relief from her wheelchair, etc.

So it is very individual. Some families can go and go all day and will be able to get to all 4 parks and get a lot done. Some families have very sick children that have to go just a little while and rest and won't get to as many parks.

All of the parks have things that all ages would enjoy. I think it just depends on what themes they are interested in. I would definitely devote a whole day to MK. You need a full day for that...unless you have been and feel like you have been there and done that.

I should have more info on AK after my trip this week, as I have never been.

Epcot has the World Showcase, which doesn't seem to appeal to most kids...although they do have things for kids to do. But the Future world Epcot is awesome...has some great rides and some other cool things that kids would certainly enjoy. They also have a Wish Lounge (VIP Lounge, specifically) that you guys can rest and get a little special treatment. So I would definitely try to get at least a half day at Epcot.

DHS has a lot of shows...I would just look at those shows and rides and see what they would want to do. Toy story is a great ride and with the magic button, you don't have to wait forever.

Sea World: The main thing we enjoyed was feeding the dolphins. They make sure that any wish child has a good experience with this. It is free. But other than that...if you have done it before, you might want to skip it.

Universal: Never been. But there are a lot of TR's with Universal thrown in. They have cool stuff there that is not at Disney...especially specific characters that your kids may want to see.


GKTW has a lot of activities as well, so make sure you make a little time for that.

I send a "planner" on an excel spreadsheet to all Wish Families...if you want one. FYI for anyone reading this that wants one. It has all of the GKTW activities as well as a general plan of which park you could do on which day...usually I would suggest a long day, then a short day...so if you think one park will be a short day you can put that between two long days so that you can catch up on some rest. You can also schedule a shorter day on the day of the Christmas party and such since most families want to catch that.


Wow...I have talked WAY too much!!! You have gotten the stream of thought from Maroo today! Sorry!!!! Total brain spillage!

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!

 

[WishMom09]

I found my stroller post...and I already had 2 great answers!
Not sure what we will do though!

 

[maroo]

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!

You are very welcome! I just typed and typed and typed...

I normally wait until you have dates. Seriously, the planner is very date specific. I look at the "good parks/bad parks" list for the dates that you will be there and the crowd calendar to give me an idea of any dates to avoid (where you could do a non-Disney park instead). And take into account your flight info (if we have it) and the parks you want to visit, the GKTW schedule and put it all together in a spreadsheet. You can, of course, do anything you want with it! And it is FREE (I have had families think they would have to pay for it!)

I know nothing about strollers. Especially the new ones. But...I could take a picture when I am there.

Did you say you had requested specific dates? If so, you can PM those to me. Or post them.

Are you planning on extending your trip? I highly recommend it, if you have the means. Even just a value resort for a few days and an extra Disney ticket or two would help, especially since you will also be taking breaks. It is a great vacation...but if you can build in a rest day, it works wonders! We were not able to extend due to the school schedule for Lauren. You may also have an "extra" day left on the tickets GKTW gives you that you could still use. They expire after 14 days of the first use.

If you can't...don't worry, you will still have an awesome vacation! Some MAW chapters won't allow you to extend. And many families can't afford the expense.

It is also very hard to judge because you won't know how much money MAW is giving you until very close to when you leave. Sometimes it is more than you think it would be and sometimes less. So you will have to factor that in, too.

 

[WishMom09]

We are hoping for the dates of May 9-16th. I sure do wish they would come see us already!! If you would rather wait to send me your planner until I have dates that will fine too! That would probably help me out more!
I will let you know the dates whne we have them confirmed!

I hadn't thought about extending the dates! If we were able to do that we would probably need to wait and go in June. Cause we are already pulling the kids out of school for a whole week! And I thought May would be less crowded and cooler too!

 

[HeatherSue]

I just wanted to tell you that I'm on board for your pre-trip report! Yay! I can't wait to hear what your dates are, and to see some pictures! My sister will be there in May, too!

 

[KathyRN137]

Hi Tiffany!

I am so touched by your family's story and I am looking forward to reading about your plans!

I hope you check out the DisABILITIES board for some helpful information.

There is an excellent guidebook you may wish to read before your trip:

PassPorter's Open Mouse for WDW and the Disney Cruise Line. (Deb Wills and Debra Martin Koma). It covers every ride, show, and attraction at WDW from the perspective of those with special needs.

I'm sure you can order one from your local bookstore, or, at
http://www.passprter.com

TTYL,

Kathy

 

[WishMom09]

Hi Tiffany!

I am so touched by your family's story and I am looking forward to reading about your plans!

I hope you check out the DisABILITIES board for some helpful information.

There is an excellent guidebook you may wish to read before your trip:

PassPorter's Open Mouse for WDW and the Disney Cruise Line. (Deb Wills and Debra Martin Koma). It covers every ride, show, and attraction at WDW from the perspective of those with special needs.

I'm sure you can order one from your local bookstore, or, at
http://www.passprter.com

TTYL,

Kathy

Thank you Kathy! I appreciate the sweet comments! And thanks for the advice about the book! I will have to look into that!

 

[WishMom09]

Just got off the phone with the wish granter! She is coming Monday evening!!
We are so excited to make this all "for real"!
I think we might try and extend our trip a couple of days since we might never get an opportunity to go to Disney this again! I don't want to feel like we missed out on anything!

 

[autumnpalm]

Awww I'm so glad you are finally getting to meet your coordinator. I hope you can get your trip extension.