Tyler's Troopers descend on WDW for a Wishtrip & Birthdays in late May

[TTomlinson]

We are so excited! This will be the kids first ever trip to Disney and Florida. We met with the MAW screeners last night and started plans. We don't have dates yet, but they said to expect to go in about 6 weeks (end of May). Tyler's Bday is May 10th and my other son Brett's is May 19th so we will be celebrating birthdays as well as making Tyler's wish come true.


Tyler will be turning 6 and is an amazing, sweet, funny and loving little guy who just loves life! He was recently diagnosed with Friedrich's Ataxia, on top of already being diagnosed with high functioning autism, ADHD and Sensory Processing Disorder. FA is a a devastating, genetic neurological disorder that progressively takes away a child's motor skills, speech skills, bone and muscle strength – and, ultimately, his or her life. As yet, there is no known cure. Luckily we do not yet have the scoliosis that can accompany FA or diabetes, but he does have a moderate case of cardiomyopathy that is already impacting his heart function. We just started on ACE inhibitors to help his heart function ease. He is still somewhat mobile, but has very cavus feet (extremely high arches and hammertoes) and some muscle loss in his lower legs so his gait and balance and coordination are very affected.

You can find out more on Tyler's Caringbridge website http://www.caringbridge.org/visit/tylercarpenter

So this is my first ever Pre-Trip Report so I'm totally winging it here If I miss anything let me know and I'll add as needed!

As for the cast:

I'm Tami (mom), 35 yrs old and the only princess in the house! I'm a photographer sometimes although not as much as I used to be before Tyler came along, although my kids still get tired of me not being able to just take "snapshots" lol everything needs good light and pretty background! But I'm getting over that! I've only been to Disneyland once, by myself, actually on the trip when I got pregnant with Tyler. My ex was at a conference and I spent the days exploring Disney and pretending I was a 10 yr old girl!

Tyler of course is the star of the show most of the time at our house. If he is not getting all the attention he finds some way to demand it! He loves Blues Clues more than just about anything and we are hoping to meet Blue while we are in FL. He also loves Pooh/Piglet/Tigger, Dora and Doodlebops (one of his wishes was to be made into Moe the orange Doodlebop lol)

Clayton is 8 and is my cassanova. He is such a loving kid and is able to charm just about anyone with his huge blue eyes He wants to be an actor someday!

Brett is 11 (almost 12!) and is in the awkward tween age but is a hilarious kid. He loves arts and crafts and makes the coolest origami you've ever seen. He loves gaming like his mom and we have to watch him or he will take over an xbox in no time flat!

Dillon is my oldest, 14 going on 30. He is an amazing musician and loves to play his guitar (or any instrument he can get his hands on) and writes music as well. He also loves studying about tornado sirens and maybe someday will be working in the meteorology field developing new ways to warn people. He is a little more reluctant about Disney but I know he'll have a great time too. I think his hesitation is that he just detests some of the current Disney music stars because he thinks he could do so much better if given a chance lol. Maybe just a tad of narcissism but at 14... what do you expect?

:
And joining us will be my mom, Mimi (or Carol for anyone over 18)! I definitely will need help with all four boys and Tyler especially, so MAW is letting my mom join us on the trip. She lives in Oklahoma so we don't see her as much as we'd like and this is going to be such a memorable thing for our family with Tyler. She is a great Mimi, although she spoils the boys way too much of course!

 

[xanphylus]

Great start! Your kids are cuties! (Even the "I'm not cute, I'm a boy" boys!) I love your pics and the lighting too... lol. I love taking pics too- but I gave up on most of the fancy stuff- the 1 year old is having none of the "hold that pose please" crud from me!

You guys are all gonna have a blast at Disney. Even the oldest who has his reservations, will give them up when he see's the bigger kid stuff. I even got my DH to love the stuff (and if not actually love, at least be patient ebough for his family's love of all things Disney).

You're doing just fine on your very first PTR and I am sure many more people, esp from the WISH boards, will find it soon. Tell Maroo that you started one so she can link it to the WISH thread! That will surely get you more people over here who can answer questions and help too.

Keep writing- we'll be waiting!

 

[TTomlinson]

Thanks so much both for visiting Tyler's site and signing his guestbook and posting on here Xanphylus!!! We really appreciate it so much! I'm so glad I found this great group!

 

[TTomlinson]

Ok so the boys and I (at least the older ones) decided we were all in for pin trading extravaganza this trip. We all agreed that it would be a lot of fun and something really memorable to bring home from our trip. I did pin trading just a little the one time I was at DL but I was short on money so only bought the little starter lanyard that came with some pins and just had fun with that. I loved it though. I've got to find my autograph book and photos and pins to show the boys. I think it will really get them excited... as if they need help!

So, I let all of our supporters know that we were going to be pin traders and asked for our family and friends to donate some pins to the cause by ordering some lots from Ebay or sending us ones that their kids collected and no longer want. I also bid and won a lot of 20 today for just under $20

I'm so gonna have to watch it because I wanna order a TON of pins and start buying clothes and such for the trip and I really need to watch my budget! I know we will get so much cool stuff from all our supporters and MAW and GKTW. Its just so hard to refrain!

My mom and I had a great time talking about plans and ideas on the phone today... she just got back from a golf vacation in Florida late last night/early this morning. We decided that we may spend one day at the beach (they were just in Daytona) since the younger boys have never been to the ocean and its a shame to fly halfway across the country and not let them at least experience that for one day. So if anyone has suggestions, let me know!

I also got an email from Littlest Heroes today that we were approved for a photo session (thanks to whoever shared that on the Wish Trippers thread). I am a photographer but have hardly any pics of me with the boys and none of all of us together since about 3 years ago. I'm always behind the camera. So I'm keeping fingers crossed that we can make it happen to have a photographer meet us at the beach for some really great family photos and some awesome ones of Tyler.

Its so hard to plan when we don't even know for sure what our dates will be. I'd love to start making our estimated schedule (I know it will change when we get there!) and try to at least get Tyler in to eat with Pooh and Friends at the Crystal Palace (right? I'm so new at this I'm always worried I have it all wrong!) Hopefully it wont take them long to make the arrangements and we can start doing all that! Otherwise I think my brain might burst!!!!

 

[TTomlinson]

Oh yeah! I decided today to do something positive for myself and the boys as we move towards our Disney trip. I have been needing to get healthier and lose weight for far too long now. As Tyler has been going through diagnosis I keep telling myself that its really important now for me to get healthy so I can take care of him. So today, I got back on my meds, drank water instead of Mt. Dew (a huge addiction of mine), walked Tyler to the park to play (he had a blast! and it was so good to see him giggle and laugh) and decided to buy nicotine gum or patches or something as soon as I get paid Tuesday.

I've been wanting to give up smoking for awhile now but it is so hard since my boyfriend smokes and its kind of our "time-out" from the kids and stress to chill and talk to each other outside or in the garage. Its just so bad for everyone, and so expensive! I'm quitting now so that I'll be over most of the cravings by our trip. I can't imagine how stressed I will be looking for places to sneak off and smoke during this trip and the time wasted doing that when I could be with the kids and watching Tyler live his dreams and wishes. Smoking has become such an un-cool thing and it is harder and harder to find anywhere appropriate to light up that I just decided I'm done. I don't want to be all cranky wanting a cigarette at the airport or the parks or anywhere anymore! Wish me luck!!!!

I am not really counting on loosing a ton of weight before our trip. Its only 6 weeks but I know even 6 weeks of changes will make a huge impact on how I feel and even if I only lose a little that I've put on with all this stress related eating in the past 6 months so I can wear some of my clothes that just aren't comfortable... any change for the positive will be worth the investment!

 

[maroo]

Hello there!

I have put a link to your pretrippie on the Wish Trippers page - so hopefully you will get some more traffic over here!

You have done a GREAT job on this! I love the pics of the boys - very professional!

And kuddos you for wanting to get healthy! They definitely will need their Mom for many years to come!!!!

 

[Mtopher4]

Welcome

My Birthday is my 18th LOL

We are going on my daughters wish trip on May 9th She picked the cruise.. I can't wait. I'll be following your PTR

 

[cantwaittoseemickey]

Hi there Tami! So happy to hear Tyler was approved for a Disney Wish trip! I read his CB page and I have not commented on it just yet. Tyler and your whole family are very handsome boys. And they have a wonderful momma I love photography only my family is not into the smiling and posing for me so I gave up. I only torture them every once in a while (with the exeption of when we go to Disney of course)

I watched the entire FA video on his CB page. That is a very informative video. It really walks a day in the life of a child with FA. Ty was tested for the ataxia's but it was negative. He has an ataxic gait(off and on) and myoclonic movements that come and go too.

Wow 6weeks That is not long at all. You will be in Disney before you know it!

 

[pacrosby]

Welcome Tami!

I'm an 'oldie' here...................already went on our trip (in December) but hanging around as I continue to try and finish our Trip Report (and plan for an upcoming trip )

Congrats on the healthy eating challenge! I'm on one of those too. I don't call it a 'diet' because in truth I'm eating alot more than I used too..............it's just that I'm eating fruit instead of cheezits and vegetables instead of chocolate And like you I've gone cold turkey with the Coke (from 5-6 a day to nothing but water )

Your px are great. Love black and whites.

Enjoy the planning. We're here to help

 

[kdzbear]

Yeah, another Tyler! My Tyler went on his Wish Trip last November. I can't wait to hear all about your plans. I have a great person I buy pins from on ebay that are inexpensive and always real and high quality. PM me if you need her ebay name.

Welcome!

 

[wishin' on a star]

Hi again Tami! Your PTR is looking great!!! The pictures are fantastic, your family is beautiful, and I can't wait to learn more about your family and hear all of your plans. I'm looking forward to you getting dates, in case we are there the same time!

 

[TTomlinson]

I am feeling a little impatient and overwhelmed at the same time I spend WAY too much time reading about trips and reports and ideas and tips but still feel like I haven't even scraped the surface yet of planning LOL Part of that is still waiting on confirmation and dates.

But here is kind of what the boys are looking forward too on the "must-do" list so far:

Pin Trading! This even got my teenager excited We ordered some pin lots to practice at home and get a good base to start from, they should be here soon!

Ridemakerz The boys can't wait to build custom RC cars together. I hope that Tyler has fun with this and the overwhelming choices don't overstimulate him. I may ask them to do a special "easy" version of it for him with his issues.

Lunch or Dinner with Pooh and Friends at Crystal Palace

I found out each of the boys favorite characters (actually their top 3) and I'm planning on doing a couple of things special for each boy hopefully. I was kind of surprised by some of their answers but happily so!

I really want to go to La Nouba and think the boys would love it but we haven't decided yet. It depends on the cost of tickets and scheduling. I love Cirque du Soleil and have been enthralled every time I've gone.

We are really hoping that we get scheduled to be there for at least a day of the Star Wars weekends! The middle boys especially are all abuzz about getting to do jedi training and fight Darth Vader or Darth Maul and see all the storm troopers etc... They love Star Wars (so do I) and I think they would have a blast if this happens while we are there.

Tyler just still keeps talking about visiting Micky's Clubhouse, being Steve and meeting Blue and eating with Pooh and Piglet.

We did decide to spend a day on the beach in Daytona, so everyone is looking forward to that too.

Oh yeah, and HATS everyone is already talking about what kind of hat they want lol

 

[TTomlinson]

Yay we just got an email from MAW that we have a wish coordinator now and she should be contacting us about dates soon! Can't wait so I can really start planning

 

[xanphylus]

Yay we just got an email from MAW that we have a wish coordinator now and she should be contacting us about dates soon! Can't wait so I can really start planning

Hurray! That's great news. Then you will be able to plan and get really excited. I am sure it will seem much more real once you have dates too!

 

[kdzbear]

I can't wait to hear the dates you get. I hope the pin trading info. I PMed you helped! I bet the kids are getting so excited!

 

[wishin' on a star]

Yay we just got an email from MAW that we have a wish coordinator now and she should be contacting us about dates soon! Can't wait so I can really start planning

Don't keep us in suspense too long! I hope you hear from her soon!

 

[TTomlinson]

Well (keeping our fingers crossed) our MAW coordinator called today and gave us the dates of May 16-22

I'm so excited but also had a bit of a rough day too so I'm just too pooped out to write more right now, but wanted to update everyone. Looks like maybe we will get to meet a few of you!

We had a long day of SLT/OT/PT and met with the DME rep for the first time and it was basically decided that his mobility and balance/gait have gotten quite a bit worse recently (I had been thinking this too) and that for his safety and stamina the best thing is a wheelchair part-time for now. We are also going to try some AFOs that are made a bit different to see if that helps when he is up walking. Just sad at another step in this journey that I don't want to be on... For now it will be used just for long distances and times when his stamina and strength just can't last, but its also to get him used to using it because he will become more dependent on it as his disease progresses. Again heard that they've never seen a kid so young with such a severe progression already. It sure doesn't do anything to reassure me about the progression of his disease and how fast this is happening.

Anyway, I have a ton of things to do and I'm sure I need to go just take some time to chill after a long day. I'll be back later to post more about planning when I'm more in the mood!

 

[xanphylus]

I think you need a hug! And congrats on the dates!!!

 

[wishin' on a star]

YAY for dates! You guys will be there the same time as us! It's creeping up very quickly!!
I'm sorry about the progression and needing a wheelchair.

 

[TTomlinson]

TY for the hug! I definitely needed it this afternoon!

I was feeling so sad this afternoon about the whole wheelchair issue and I got this amazing phone call that really lifted my spirits! I had sent an email to Ridemakerz after seeing their site and the blog about how cool it was and my boys being so excited about going there. I knew that a visit there would probably just kill our expense budget so I emailed them letting them know we would be there on a wish trip and asking if there was anything they could do for us to help so the boys could have that experience. Well, one of the head honchos called me from his vacation and said the email had found its way to him and he had visited Tyler's site and had taken it upon himself to create a really awesome experience for my boys. He said they are still working out details and he will call to give and get more info when he is off vacation next week but the idea they are tossing around is having a private, complimentary Ridemakerz bash for our family one morning before the store opens! He said the whole pit crew would be there to entertain us and make it a truly memorable time for us all. He said he's even working on having a team member or two available just to take photos/videos for us so that I can just enjoy the time with the boys. He hinted at a lot of cool surprises and gifts for the boys and making them honorary pit crew members He said he has some other ideas including working with some of the big wigs at Disney that he has connections with to do some really "guy" stuff behind the scenes at the Richard Petty racing experience (I know nothing about this lol) and making quite an event out of all of it for them. I am just so honored and in awe of these awesome people that will go out of their way to make this special for my boys.

As I was looking at our possible schedule I realized that the best morning if it works for the store/crew is Wednesday (no characters at GKTW that morning) which is my one of my son's 12th birthday so I think we are going to make it into a birthday celebration that he will never forget!

I guess it just proves my motto that it never hurts to ask! My kids are not all that into the character meals and this close to the date I don't know that I could get many reservations anyway, this is going to be so much more their speed!

I'm sitting here with printouts and scribbles trying to work some kind of basic schedule out but I'm finding it hard to coordinate such a large age range. I've already told the boys that this trip is mostly about Tyler and so they will have to "put up" with a lot of things that may not be their interest, but I am setting aside special time for each one of them to do what is most important to them too. I think its going to work out for me to sneak away with each one for a few hours during the trip for some one-on-one special time since my mom is going. To them I think that means more than anything since they don't get that much at home.

So, for my oldest Dillon it will be dinner at Hard Rock and the Blue Man Group at CityWalk at Universal Studios. For Clayton who is 8 I think we are having a pirate league afternoon just the two of us. I haven't quite decided what Brett's will be yet because he gave a priority 1 to every single ride/attraction/idea I mentioned! We will figure something out though! LOL

And for Tyler I'm going to plan some special things at MK our first day there for his birthday and sneak away with him for just a little bit to do some mommy adventures there.

The middle boys have totally abandoned the pirate ideas in favor of Star Wars, but I can't say I mind I'm kind of a Star Wars, sci-fi, fantasy girl myself!

So, just wanted to share that even though today was hard, there was a huge bright spot to ease some of the burden. I guess that's what this is all about anyway right?