Christian's MAKE A WISH Coming True!!!

[rayleechristian]

Praying the MRI is easy and doesn't show anything more than Migraines. They are enough of a bear to deal with!

You are right about that!! Thank you so much. I guess we will know tomorrow if he has to have it. I'll post and update. I hope you had a wonderful mother's day!!

 

[rayleechristian]

Hey everyone!!! Sorry it has been so long since our last update but things have been very hectic!! We have not done Christian's mri yet. We wanted to wait until we talked to his neurologist and cardiologist before we did it. We just got back from Columbus Ohio and Nationwide Children's Hospital. We saw both of his doctors and they ok'ed the mri procedure. Right now we are monitoring his migraines and will make the final decision soon. We ended up flying this time to Columbus and it was sooooo much fun. This was the first time the boys had flown commercially. Raylee has flown in a bi-plane before but never in a plane this big. Before we left Chris, my hubby said to Christian that it would be so neat and he would probably get his wings since it was his first time flying!! Christian responded in his squeaky little voice "chicken wings"!!! He loves chicken wings. Ha Ha!! With Raylee being non ambulatory, we knew it would be difficult to transfer him from his wheel chair to the airplane aisle wheelchair and then the seat, let's see, what ended up being 10 times!! But the airline people were great. They were so nice, patient and helpful. Raylee was such a champ too! He is very sensitive since having his spinal fusion and heel cord release, so him doing so well with these transfers is a huge deal.

The day after we returned home Chris had a huge gallery opening. We have been so excited about this and he has been very stressed trying to have everything done. The opening was Friday night and it was fantastic! Tons of people were there and he sold so many pieces. It was such a great ending to a very stressful time.

"FORGET"

MISSISSIPPI BLUES"

"LITTLE DUDE"

"LITTLE DUDETTE"


Now back to DISNEY!!!!!!!
WE GOT OUR DATES!!!! SEPTEMBER 12TH-18TH!!!!

We are officially staying at the Animal Kingdom Lodge! and flying there!!! our countdown from today is 97 days, 11 hours and 54 minutes!!!!! OMG!! I have also made all of our reservations! I'll post them soon. We are getting so excited, we can't wait.

 

[billwendy]

Woo Hoo!!! September!!!!!

 

[rayleechristian]

Woo Hoo!!! September!!!!!

I KNOW!!!! September is a great month!!!! Both mine and my husbands birthdays and our anniversary!! BUSY but great!!!

 

[rayleechristian]

Ohana 9/12/11 8:15 PM
Chef Mickey’s 9/13/11 7:05 AM
The Pirate’s League 9/13/11 9:40 AM
Mickey’s Not So Scary Halloween Party 9/13/11
Tusker House 9/14/11 8:05 AM
Le Chefs de France 9/14/11 6:50 PM
Boma-Flavors of Africa 9/15/11 7:30 AM
Mama Melrose’s Ristorante Italiano 9/15/11 1:25 PM
The Hollywood Brown Derby 9/15/11 6:30 PM
Ohana 9/16/11 7:30 AM
Cape May Cafe 9/17/11 6:55 PM

I think we have gotten everything we wanted!!! yay
Also, we are trying to figure out a date and time to go to Cinderella's, any suggestions would be wonderful!!

 

[rayleechristian]

What a summer we have had!!!! It really did fly by!! We have been so busy!! MDA summer camp, gallery openings, doctors in Ohio, service dog in Orlando, family time, friend time, fixing our house time and that equals up to not much down time. Christian's MAKE A WISH is exactly 26 days, 7 hours and 11 minutes away. Which means I am about to freak out. The Muscular Dystrophy Association summer camp was soooooo much fun!! The boys went to a camp here in Alabama that is specially designed for disabled children. They were 4 hours away from home but they had a blast! They were able to play power soccer, the zip line, horseback riding, fishing, tubing, karaoke, swimming and much more.

CHRISTIAN AT MDA CAMP!!

CHRISTIAN AND HIS COUNSELOR JILL

CHRISTIAN AND GAGE

CHRISTIAN AND WILL

CHRISTIAN AND BJ

CHRISTIAN AND RAYLEE WITH THEIR COUNSELORS LUCIAN AND JILL

RAYLEE HORSEBACK RIDING!

RAYLEE FISHING

RAYLEE ZIP LINING!

to be continued………………...

 

[rayleechristian]

Their doctor appointments in Ohio went well. The neurologist and cardiologist saw both of them. They have both been entered into a study that is to determine the “natural history” of cardiac disease in DMD, which results from deficiencies of the dystrophin protein; to compare the cardiac and skeletal-muscle effects of dystrophin deficiency over time; and to correlate the cardiac effects with specific dystrophin gene mutations.


We always enjoy our time in Ohio although it is stressful. The boys got to fly for the first time! They thought it was totally cool! Christian's daddy told him that he would probably get his wings (flying wings pin from the pilot). Christian got so excited and yelled out "chicken wings"!! We told the pilots and stewardesses this and the all busted out laughing! i'm happy to report that yes he did get his flying wings but sadly no chicken wings


We stay at the Ronald McDonald House which is always a delight. The food is always delicious, the boys got free hair cuts and we got to meet a boy that had been on America's Got Talent! He serenaded us during dinner one night.
[IMG]http://i930.photobucket.com/albums/ad146/rayleechristian22/40218330.jpg[/IMG][URL="[IMG]http://i930.photobucket.com/albums/ad146/rayleechristian22/40218330.jpg[/IMG]"]
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Oh and Mimi found herself a new boyfriend.

to be continued …………..

 

[xanphylus]

Sounds like the kids had a blast at camp!!! I would dearly love to go back to camp... but I don't think they make summer camps for moms...

Looks like you guys have a great line up of ADRs too- and at Animal KIngdom! Looks like a great trip is coming up fast!

 

[billwendy]

Sounds like a great summer! I cant believe its almost over too!!! I volunteer for 2 weeks at a camp for kids and adults with special needs in Bigfork, MT - its a BLAST!!

 

[rayleechristian]

Omg!! What a whirlwind it has been since the end of summer!! I hope everyone is well! We are doing great! I have a ton to catch you up on. So here goes!

I am another year older ? , Chris is another year older ?, Mimi is another year older ? and Christian is another year older 9. We have had 3 more art shows, so we have been traveling a ton! We had an awesome Halloween, Thanksgiving, Christmas and New Year spending lots of time with family and friends. We celebrated our 10th year of the Angel Ride with Montgomery Gentry as the main act and lots more talent throughout the 4 days. http://www.angel-ride.com/ Christian is doing really well! His migraines have subsided, thank the Lord. He hasn't had one since the first week of school. He has all A's in school and loves his friends. He is still walking and getting around really well too! The deflazacort(steroid) seems to be working! He must have been very good this year because Santa was really good to him!! Lots of legos and xbox games, he even got a 3ds with games. Raylee is for the most part doing well. He is making A's and B's in school and loves hanging out with his group of friends. He got an awesome new wheelchair, Permobil!!! It is like a mercedes benz! It has all the bells and whistles. I think the only thing it can't do is feed him!!! Speaking of that I think because of the new chair he is having a difficult time eating right now. His body is adjusting to the new way he is sitting. He was also good this year! Santa brought him a new xbox (since over the holidays his old one had the red ring of death), xbox games, legos and more!! Mimi is wonderful and full of life at this point in her life!! She is enjoying time out on the town with her friends and quiet time with her family. The dogs and cats are great!! Right now they are snug as bugs in a rug! I have 2 on me sleeping, one on the cough snoring, one under the Christmas tree sleeping and one in Christian's bed snoozing. Lazy bums!!

We did one more thing that i can't quite think of …………………………….hum……………………………..….i'm thinking……………….oh yea!!!!!


CHRISTIAN went to DISNEY WORLD!!!!!!



to be continued………………………………………………………..hehe!!

 

[kaileighbug]

Well that was a cliff hanger.....I hope he had a blast!

 

[mymeme]

I have just found this!! There are no recent posts I really hope everyone is good. We have a precious little grandson with this horrible thing called Duchenne Muscular Dystrophy. He is 5. I sent you a private message.
Again, since I just found this I hope I did not miss other posts.
Best of everything for you and your family.