Caleb's Wish trip!

[Andreaswish]

Hi,

I just wanted to let you know I am enjoying your pre trip report. Maroo has lots of great advice and tips.

Hope you have a wonderful wish trip and I look forward to reading more.

Diane

 

[WishMom09]

Thanks for more great advice maroo!!

And Hi Diane! Thanks for reading my TR...I was feeling all alone!


This week has been crazy with Dr appts! Caleb and Aubree both had their well check ups....then Aubree had a UTI....and it is only Wed.
SO I am sick of going to Dr's this week!

Caleb had a great check up...we are still waiting on the results of the Collegen smear to see if he has the type of MD I suspected! (40 days will be up on the 6th of April)

Aubree had to get 4 shots ...so she was not a happy camper!
But no more until she is 11! And other than that had a great appt!

I have been buying things like rain ponchos, neosporin to go (for scraped knees on the trip ....Caleb falls a lot), crocs....we are getting quite a pile going!

We are down to 37 more days!
But still seems to be going S--L--O--W!
Just because I am so excited!

I have a friend who just got an acceptance call from MAW...they are also going to DW. So I have been sharing some info with her, which helps the time pass a little!

I need to decide what I can put in the kids Easter baskets! I have NO clue!

 

[Andreaswish]

Thanks for more great advice maroo!!

And Hi Diane! Thanks for reading my TR...I was feeling all alone!

I have been buying things like rain ponchos, neosporin to go (for scraped knees on the trip ....Caleb falls a lot), crocs....we are getting quite a pile going!


THat is so funny I have been picking up a few things also, and one of the things is rain ponchos for us I got them on clearance at Target awhile back. My mom is giving the kids new swimsuits for Easter, which is great. I have bought my dd a couple of new tank tops for the hot trip. I have also purchased a couple of guide books and gotten lots of books from the local libraries.

Your family is deserving of this trip and I hope you guys have a great time, I loved the pic of your dd in the van with the suprise trip to Great Wolf Lodge So precious.

Maroo is so awesome she has given both of us some great info.

 

[WishMom09]

Just had to share....Aubree came home from church last night able to recite John 3:16!
She just turned 4 last week! I was so shocked!

So I had to video it and share It cut off the very beginning..sorry

 

[WishMom09]

Well after 8 1/2 years we have a diagnosis! Caleb has Ullrich congenital muscular dystrophy (UCMD) It is a slow progressive form...which is awesome!
It is a very rare form of MD. Our Dr only has 15...Caleb makes 16...patients with this form....and about half are still walking on their own.
So we feel lucky to still be doing so well!
I just feel so relieved to finally have a diagnosis!

 

[maroo]

Wow!! Love the video!! Very impressive!! (And not sure how I missed it? )



That is wonderful about the diagnosis! I am sorry that he has any diagnosis at all...but if you have to have one...the less progressive kind is MUCH better!

Now, you get to celebrate in Disney!

 

[WishMom09]

1 MORE MONTH from today!!!!
We are just a little excited over here!!!!

 

[3princesses+aprince]

1 MORE MONTH from today!!!!
We are just a little excited over here!!!!

Awww, we're down to 33 more days, and we're getting really excited over here too. Don't ya just love all of the excitement!!!!!!!!!

 

[maroo]

1 MORE MONTH from today!!!!
We are just a little excited over here!!!!

 

[WishMom09]

Well after reading more about Caleb's type of MD I feel like we are taking this trip at the right time! Almost all of the cases I have read about (curecmd.org)
they were in wheelchairs by age 10. Caleb is 8. So this may have been perfect timing for a trip to Disney!
I still feel relieved about him having a diagnosis...but it kinda deflated at the same time!
But we thank God each day for Caleb and how well he has done so far!
And we are so thankful to get to go on this awesome trip!

 

[maroo]

Well after reading more about Caleb's type of MD I feel like we are taking this trip at the right time! Almost all of the cases I have read about (curecmd.org)
they were in wheelchairs by age 10. Caleb is 8. So this may have been perfect timing for a trip to Disney!
I still feel relieved about him having a diagnosis...but it kinda deflated at the same time!
But we thank God each day for Caleb and how well he has done so far!
And we are so thankful to get to go on this awesome trip!

Aw...So it is worse than you previously thought? Man, I am sorry!

This is a great time for the trip!!

And it is coming up!!!!!

 

[WishMom09]

So I have been looking at the parade schedule and if we go to the parks on the days we have planned we will miss Spectromagic. Why don't they have it every night?? Anyone know?
It is only listed on Tues and Thurs night the week we are there.
Which are the days we have planned as Universal and IOA days!
Might have to do some schedule tweaking??

 

[jenb1023]

So I have been looking at the parade schedule and if we go to the parks on the days we have planned we will miss Spectromagic. Why don't they have it every night?? Anyone know?
It is only listed on Tues and Thurs night the week we are there.
Which are the days we have planned as Universal and IOA days!
Might have to do some schedule tweaking??

I don't know why they don't run it every night but it is our favorite parade and if you are able to squeeze it in we highly recommend it!

 

[maroo]

So I have been looking at the parade schedule and if we go to the parks on the days we have planned we will miss Spectromagic. Why don't they have it every night?? Anyone know?
It is only listed on Tues and Thurs night the week we are there.
Which are the days we have planned as Universal and IOA days!
Might have to do some schedule tweaking??

I definitely agree with Jen...I would try not to miss it!

Could you hop over there on one of your other Disney Days?

I don't remember how your plan went...but I had one family hopping to 3 parks in one day on one of my planners... What am I thinking? But it was a quick hop from Epcot to the Specrto parade...

What nights are you doing stuff? Thursday is Christmas...so really Tuesday would be the best night for Spectro...unless you come do Christmas and run back over to MK? Or miss Christmas...

But I would do Christmas before even Spectro...and it is my favorite night activity!

It is also possible that they will ADD a Spectro show even the week before you go...they added one the very day I was there...

 

[WishMom09]

WE got our first BIG GIVE package in the mail today!
I can hardly wait for the kids to get home from school!!!
Back later to post pictures!!

 

[WishMom09]

Well the kids were super excited to see what came in the mail today!
My camera battery was low so I had to keep turning it back on to take the next picture....so I missed some opening shots....sorry.

But here they are....

Emilee LOVED the peace signs on it.....she is very into peace signs!!

Thank you Deann (don't know your screen name) so very much!! You made Emilee's day! She loves it! She already asked if she could wear it to church tonight!

 

[maroo]

That shirt is SO cute!!

And tell Emilee that I love her hair!!

 

[LeeLee2U]

YAY!! A big give package! I love the shirt too!

And I agree seems like a great time to have his trip!!

 

[HeatherSue]

Emilee LOVED the peace signs on it.....she is very into peace signs!!

Thank you Deann (don't know your screen name) so very much!! You made Emilee's day! She loves it! She already asked if she could wear it to church tonight!

I LOVE the shirt and Emilee looks so pretty in it!!

Deann is TNmom25 (I think that's right) on the disboards .

 

[PEANUT1]

I just found your trip report and am loving it!!! I can't wait for your trip too...enjoy the rest of your planning.

Oh...btw the MK on main street has a barber shop that we always go to when we are there...they have kids haircuts for 14$ and they will embelish their hair with colored hair gel and "pixie dust"...my kids love it. Even my 37 year old husband got it done last time. It is always the first thing my 5 year old wants to do when we get there.