Rolling thru the WORLD in a wheelchair on a WISH trip! 8/12 NEW UPDATE*CR CAPTIVES!!

[LeeLee2U]

Just looking for an update and had to post!!!

Ooops! I meant to say "You, Sharky and Mommom" considering sharky and trentmom are the same!!!!!

O.k. Gotta go I WILL respond to all of you tomorrow. Plus an update!!!! As the long as the lord is willing and the creek don't rise!!!!

 

[Disneymommom]

Ooops! I meant to say "You, Sharky and Mommom" considering sharky and trentmom are the same!!!!!

O.k. Gotta go I WILL respond to all of you tomorrow. Plus an update!!!! As the long as the lord is willing and the creek don't rise!!!!

Will be waiting for that update LeeLee, impatiently but will be waiting, LOL!!!

 

[5dwarves]

5dwarves, where in Alabama? We may be moving to Alabama next spring, not sure when yet but most likely in May. We will be in Tuscaloosa area we think.

Just looking for an update and had to post!!!

We live in Huntsville, where NASA is. They call us Rocket City. If you are moving to Tuscaloosa, I hope you are ready for Coach Nick Saban worship and the incessant cries of "Roll Tide." You will be in the thick of it there. Very good bbq ribs there (legendary) at Dreamland.

 

[kindakrazy2]

Just checking in looking for an update.....no pressure or anything....

 

[Disneymommom]

We live in Huntsville, where NASA is. They call us Rocket City. If you are moving to Tuscaloosa, I hope you are ready for Coach Nick Saban worship and the incessant cries of "Roll Tide." You will be in the thick of it there. Very good bbq ribs there (legendary) at Dreamland.

That is another area my DH is looking into, Huntsville. He is a government construction rep and he builds new prisons, but he's thinking of going into a different branch of the gov't and hoping if he does that to get on in Huntsville where they are building five new missile plants. I would think I would have a better shot at finding a decent paying job in Huntsville rather than Tuscaloosa. Am I right?

I never heard of Coach Saban and Roll Tide, lol, guess I'll find out next year, hahaha!

 

[LindaBabe]

I never heard of Coach Saban and Roll Tide, lol, guess I'll find out next year, hahaha!

Well, let's put it this way, they're not talking about doing laundry

 

[Disneymommom]

Well, let's put it this way, they're not talking about doing laundry

Guess not huh?

 

[Trentmom]

Ooops! I meant to say "You, Sharky and Mommom" considering sharky and trentmom are the same!!!!!

O.k. Gotta go I WILL respond to all of you tomorrow. Plus an update!!!! As the long as the lord is willing and the creek don't rise!!!!

Are we the same person??


Yeah, for an update tomorrow

 

[LeeLee2U]

hey i caught up in one night. love your report!!! You and your family are truly inspiraring. Braeton is just too cute.

Side note, we had my son taking the botox shots for about a year. They helped alot, but he was still tight. I think the nuro was still working with the dosage due to my son's weight issue's(you know how that is). Anyway his neurologist taped my son walking and showed it to his "team" of doctors and the neuro-surgeon called us and wanted to talk to us about doing a selective dorsal rhizeotomy. I am not sure if you are familiar with this surgery or not. not all cp children are candidates and they normally won't do the surgery after a certain age(8, I think) It's basically like a permanent botox treatment, except it affects all the muscle in the lower extremities.

My son had the surgery this summer and boy are we glad we did it. He was in the hospital for about 8 weeks. but what a difference. also, my son was already walking running jumping driving me crazy before the surgery. Basically he walked toed in scissor gate. Dragging his right foot. He would kinda hitch his right leg. Now, even though he doesn't do it, he CAN walk with a almost regular gait, but he still walks based on his old pattern. It will take a year or so of intense therapy to retrain him to walk the right way.

No I hadn't heard of it. I don't thiink Braeton would be a good candidate if it effects all the lower muscles. His spastisity is sporadic. Try saying that 10x fast!!!! Usually his back muscles are tight while the front are weak. The Botox helps even things out so he can balance better and work on building those other muscles more. I'm so glad to hear this worked for your son. I am going to research more about it.
I would give anything for Braeton to be able to jump. He just got to where he can hold on my hands tight and try to bounce up, so I can pull him up in a "jump". He is so proud of that. He shows everybody. Look I got another miracle. I can JUMP!!!!
Thank you for being here!!!!

Leah:

I think we will be in Houston right after Christmas. We are planning on Christmas here because my husband's twin and his family are coming, and my DH doesn't have any more leave time right now. My dad and mom are in poor health. As the oldest child there are things I need to do to take care of some business for my parents. Additionally one of my sisters and her hubbie and new baby will be there in Houston (their first and they are in their 40's ) The kids and I will probably be there before and after New Years...I'll keep you posted (no pun intended) At this point, the kids and I are planning to head out Texas way. I have been craving some good Bodacious BBQ Brisket (they don't do beef in Alabama, mainly pork) and I think there is one close to you off US59. I'll bring lunch!

~Elisa



Honey...you have WAY too much time on your hands...LOL.

~E

I think MomMom explained I just cut and pasted that list. I was actually being lazy!!! Bodacious is about 5 miles from my house!!1 It's right here in the town I live in!!!! Call Me!!!!

Just looking for an update and had to post!!!

Now you know you were just trying to get a higher post #!!!

Just checking in looking for an update.....no pressure or anything....

I
can't
take
it
anymore!!!!!


j/k

Well, let's put it this way, they're not talking about doing laundry

Are we the same person??


Yeah, for an update tomorrow

That's you're other personality!!!!!! Don't start playing no Ddad thing on me!!!!

 

[Trentmom]

N to research more about it.
I would give anything for Braeto





j/k





That's you're other personality!!!!!! Don't start playing no Ddad thing on me!!!!

Sorry..had to go there.

dan and ddad are confusing the heck out of me

 

[LeeLee2U]

Sorry..had to go there.

dan and ddad are confusing the heck out of me

Whew! I thought they had rubbed off on you for a minute there!!!!

It really freaks me out! I know I know it's all in fun, but There for a little while I thought we had one of those....Well to be polite I'll use Kindas name for them...Trolls!!!
it was almost like a DIS stalker!!!!
I'm o.k. with it now I know it's them.

 

[Trentmom]

Whew! I thought they had rubbed off on you for a minute there!!!!

It really freaks me out! I know I know it's all in fun, but There for a little while I thought we had one of those....Well to be polite I'll use Kindas name for them...Trolls!!!
it was almost like a DIS stalker!!!!
I'm o.k. with it now I know it's them.

Nope, not yet


Dis Stalker....Love it

 

[DisneyJo]

Great update, how cool that the w/c wheels light up and how sweet of the family on the boat to give the boys their ears

 

[LeeLee2U]

So RINGGGG RRIIINNGGGG AHhh who's calling us this early???? Jump out of bed to go grab the phone.OOOOUUUUUUCCCCHHHH!!!!! Who PUT this table here???????
I can't find my glasses, AAAGGGHHHH The wall is gone it's completly moved!!! WAKE UP SHANNON!!!! Half the house is gone!!!!!!!!

Oh Yeah we're at Disney World!!! Oooopp[sss!



Nah! I actually woke up early this a.m. I guess I was excited.
I tried to start waking Tyler up a few min. before our wake up call was to come, but NO DICE. NO ONE wanted to wake up!!! RRRRIIIINNNGGGG "Boys someone is calling who's going to answer it?"
ZZZZZZZZZZZZZZZZZZZz
O.k. I will. Hello? and yup you guessed it. It was Stitch with that loverly voice gently telling me to wake up. And then Mickey exasperated because Stitch's soft, gentle, soothing voice made his sound bad.
Anyway I start getting our clothes together. Now I did pack in ziplock bags and I knew what we were wearing today, but it all had to be ironed. For one we were going to wear our WISH shirts and we didn't get those until we were at the airport. But if you remeber, we fell into bed exausted which means that.............
*If Rentayenta is reading this -Jenny,you may want to sit down and take deep breaths*
I didn't unpack the night before so there was luggage everywhere. Well not everywhere, but it was all piled up in the middle of the walkway
................
So I start unpacking the suitcases. My husband reminds me that I wanted to be at the park no later than 8:30 and it is almost * now. WELL I knew I couldn't come back to a big pile of suitcases, so I compromised. I unpacked the boys into the chest of drawers and all of our toiletries that weren't out from the night before. Then I rolled mly hair. Yes I use hotsticks and I DID curl my hair for Disney World. Habit people , habit. Now I've been trying to get the boys up, but they aren't having it. Braeton had gotten in bed with us during the night and was having achey legs. Also he hadn't got a bath so I had to give him one IF I could just get him up!!!!!
So I finally get the boys up, bathed and ready for the day. They are really enthralled by the fact they can stand on the little balcony and watch the people in the pool. I start getting things out.
Leah what are you doing?"
Well I'm tryng to see what all we got!"
"Leah!' Look hand me that gift bag.
And here's a pic of all the stuff we got from the Wish org.

And Braeton holding the $$$$
Oh Boy!!! How fast can I spend it!!!!!!

So then we're off. Now our plans (WHich were back in Texas) called for Magic Kingdom that day with an ADR at Crystal Palace at 2:45 which meant we were going to miss the parade, but we wanted CP that day and it was the only time we could get other than really late. We knew we wanted to ride BTMR and Splash Mountain. Do the Pirates tutorial, POC and get the boys a Haircut. And then hist as many rides as we could, but take time to sit, rest and enjoy the scenery for Braeton!!! ( I am NOT a good SIT down and REST person. Pass out standing straight up from exhaustion maybe. But sit leisurely down and rest???? NOPE! )
Now would we get to do all that?????? And Was this day really going to be all that magical??/ NOw this is NOT Cliffhangers!!! I really was wondering these questions And in the next update we will all find out !!!

 

[DisneyJo]

Wow what great gifts you got

 

[Eeyore's Mom]

I think Marek (my wish kid) would be happy with JUST the gifts. Holy moly- looks like Christmas and Birthdays combined! Good for him!!! What a great wish organization they must be. Very generous and so awesome for the kids.

You are killing me with the updates- I need at least a whole day not just the wake up!! More, more, more....

 

[Iluvmickeymouse!]

I agree wit Eeyore's mom.....need more please!! Look at all those gifts..wow!!

 

[Trentmom]

Yeah for an update


Wow...the wish organization is amazing.

All that stuff you got is great..I love the pic with Braeton and the money...a teenager in the making


I never unpack...minus toiltries..

We live our of our suitcases


Hmmm..I am going to guess you get everything you want to do minus the hair cut??, as the line was huge and the kids didn;t feel like waiting??

Am I close??

 

[Disneymommom]

Great update LeeLee, I can't wait to see what you do when you leave the hotel that day. Wow you sure got some nice gifts from the Make A Wish. That is so wonderful! Looks like they gave you some serious cash too, looked like $100 bills!!! I am so glad to know that they really do give so much to the Wish Families, they sure do deserve all they get and more.

I can't believe you are going to iron your clothes for Disney. Once you get there you will be all hot and get wrinkled anyway!!! Waiting for more pics from that day!!!!

 

[kindakrazy2]

Yeah! An update!

Love the pic of B with the money! Too darn cute!

That is so wonderful that they were so generous with you - look at all the wonderful gifts! That's amazing!