TRIP REPORT- The "you should've made her wish for something else" Wish Trip

[blessedmom4]

 

[shruley]

It would've been funnier to see. It was this HUGE grand gesture thing. We stopped in the lobby and stared and took pictures and I told my husband how I'd never get another coffee from that coffee stand...it went on and on. I look back on it and think, really, God must have just been laughing His butt off at me at that particular moment.

Sorry she has struggled so much but I have to laugh "never set foot in this hospital again" that is so funny

 

[shruley]

We would appreciate any prayers and good thoughts for Gabriella. A little over a month ago, she was diagnosed with a rare illness called HSP. HSP is an abnormal immune response to having a cold, strep, etc. Causes arthritis in her joints, systemic inflammation of the blood vessels, which gives her a rash and bruising (mostly on the legs and arms), and swelling. She had to have Ibuprofin for about 2 weeks to be able to move and function normally, but eventually the pain and rash subsided. Well, last night the rash started to return and she started complaining of pain again.

For the most part, there's nothing we can do for her except try to keep her comfortable with ibuprofin. It's not unusual for it to reappear but the longer it goes on, the more I worry about her getting complications from it. One complication can be kidney damage/failure, and possibly cardiac or lung complications. There are all rare complications, but potentially life threatening if they occur. I'd just rather it go away and stay away!!! Plus, I'm not going to be much help in carrying her, I fell Wed. night and bruised (or fractured) my tailbone. My that HURTS! I can't even put on my own socks! Not a good week in our household.

 

[tinytreasures]

hugs and prayers for both of you

 

[billwendy]

Your girls are so cute!!!

You will LOVE GKTW!!! ITs a vacation in itself!!!!

 

[blessedmom4]

Sharing some Sunshine!! I hope today is a good one for you.

 

[shruley]

Your girls are so cute!!!

You will LOVE GKTW!!! ITs a vacation in itself!!!!

Thanks!! The girls are SO excited about GKTW!!

 

[tinytreasures]

Have you heard anything back form MAW yet?

I was so happy to read your last update on your little princess
Hope she is still doing well

 

[blessedmom4]

I HAVE to know...Did you buy the Dream Duffle???
I need pictures of the dancing girl...pretty please...

 

[shruley]

Haven't heard anything back yet, but just posted an update on my blog about how our interview went! Here it is..it was quite the interview.

I am behind in posting an update on our Make a Wish journey. I had told myself I was going to document this thoroughly for all the other OCD parents out there who are struggling to find out information about Make a Wish and the Wish Process.

First, it took a little while for our wish to get "assigned". They told us we should be contacted by our granters within 2 weeks, and it took about 4. But once the Granters called, they came out to our house within the week! Over the phone they asked what kinds of food and characters the girls liked.

They arrived about 15 minutes early, armed with 2 gift bags for the girls. The girls were really eyeing the bags, so after introductions were made they gave them their gifts. Both girls got the same amount of "stuff"....equal bags of candy and some pudding for snacks (to which they both stated "ewww, we don't like pudding ." Made mental note to explain to them again if they get a gift we don't like, we don't say "ewww".) They each got a Web-kins and a small puzzle. Gabriella got a Tangled book and some Ariel jewelry, and Aleah got some other smaller toys I can't remember off the top of my head, and they both got these "capsules" that dissolve in water and a "thing" appears out of them. They, of course, had to try this immediately, so while the poor Granters were trying to explain things to us, the girls are loudly trying to figure out how to get these slimy capsules to dissolve faster. Our Granters are exceedingly patient with the chaos that's occurring.

Next came the Interview. This is where things start to fall apart. They start by asking you child all kinds of questions about things they like. First they asked for a favorite color and Gabriella replies "pink". So far, so good. Favorite TV show? "Hanna Montana". We interrupt saying "You don't watch Hanna Montana!" Our granter looks at us and asks "Really?" Really! We tell them her sister doesn't even watch it! Favorite pet is a fish. Ok, we do have fish, but she usually raves about how she loves her dogs! Favorite cake flavor? Strawberry. At this point, the poor granters are just looking at us. I know they're asking in case they bring a cake to her send-off party and I'm thinking they'll never find a strawberry cake somewhere (in their budget), so we ask Gabriella "What about chocolate cake?" "Or ice cream cake?" the granter asks. Nope, only Strawberry. The Granters write down Chocolate and Ice Cream anyway. Favorite character..."all the Princesses". What if you had to choose just one, the MOST favorite? None of them, she liked them all the same!

At this point, I'm starting to panic inside. None of these answers she's giving are anything close to the truth. I'm starting to worry about what in the world will come out of her mouth when they ask for her wish. Thankfully, when the time comes and they ask "If you had ONE wish in the whole world, what would it be?" She answered "Go to Disney World". She could not, however, tell them WHY she wants to go to Disney World. We asked and asked and asked. "Who do you want to meet? What do you want to ride?" No response. Before they came we'd watch videos of Disney and looked at pictures...and yet nothing. She'd told us tons of things. "I want to meet fairies, I want to ride Dumbo." The latest was "I want to meet Mickey and give him my (stuffed) Mickey." Nope, she wouldn't even agree to wanting to do any of those. She did give a second wish as "Mickey's Boat" which our male Granter correctly interpreted as a Disney Cruise. At this point I think they'd given up as they just turned to us and asked "What might she want to do on a cruise?" We were also required to pick a non-travel wish, and after much debate they put down games like bubble hockey or foosball, since the girls loved playing those games at the Ronald McDonald House. Gabriella said she didn't want a play set and couldn't come up with anything else.

The granters told us how amazing the Disney trips are, and that she would have a wonderful time. They were encouraging yet careful to never promise us anything. At this point the questioning was pretty much over and the girls played upstairs while Kevin and I completed the paperwork which was pretty short and painless. We requested dates for the trip of late May, next October, or next April. They told us they would mail off the application the next day, and after that it's a waiting game to hear from Make a Wish if it was actually approved. They cautioned us it could take 2-4 weeks to hear something back, and encouraged us to be patient. I think the whole interview lasted about an hour and a half. That was about 2 weeks ago, and we're still waiting to hear something.

 

[shruley]

I HAVE to know...Did you buy the Dream Duffle???
I need pictures of the dancing girl...pretty please...

"I am not allowed to buy the dream duffle. I am not allowed to buy the dream duffle." My husband keeps making me repeat that. Seriously, though, that thing is awesome. I WILL have one in the next couple years. I figure once I have TWO competing, then it's a neccessity.

The only picture I had from the Mock Competition was one my phone and doesn't do it justice...the hair extensions hadn't come yet, and we did get the false eyelashes on. I promise to post some the next time she gets dolled up, which will probably be in April!

Let me see if this link will work to post them from last years costumes.

This doesn't do it justice, however. That's insanely simple hair and plain 'ol make-up in that picture!

 

[blessedmom4]

"I am not allowed to buy the dream duffle. I am not allowed to buy the dream duffle." My husband keeps making me repeat that. Seriously, though, that thing is awesome. I WILL have one in the next couple years. I figure once I have TWO competing, then it's a neccessity.
Oh that is too funny!!! I hope you get it soon!
The only picture I had from the Mock Competition was one my phone and doesn't do it justice...the hair extensions hadn't come yet, and we did get the false eyelashes on. I promise to post some the next time she gets dolled up, which will probably be in April!

Let me see if this link will work to post them from last years costumes.

This doesn't do it justice, however. That's insanely simple hair and plain 'ol make-up in that picture!

Oh my, they are gorgeous! I can't imagine with all of the glitz and the hair extensions. I KNOW my Lisa would love that, not sure how I would be with it all... I LOVE the photos of your beautiufl daughters, the scar is all too familiar though. THANK YOU for posting them, I look forward to more!!!

 

[tinytreasures]

The girls are sooo cute.
You really need that bag.

 

[blessedmom4]

The girls are sooo cute.
You really need that bag.

We are TERRIBLE enablers, aren't we???

 

[Tonyababyrn]

YAY for Gabriella's wish trip!! The girls are gorgeous, love those dresses!! Looking forward to following your PTR.

 

[blessedmom4]

 

[shruley]

Oh my, they are gorgeous! I can't imagine with all of the glitz and the hair extensions. I KNOW my Lisa would love that, not sure how I would be with it all... I LOVE the photos of your beautiufl daughters, the scar is all too familiar though. THANK YOU for posting them, I look forward to more!!!

She had just gotten her pacemaker placed about 6 months before recital, so that scar is pretty fresh and red! Of course they had this costume that was pretty low cut. She doesn't care though, I keep wondering at what age she'll start to be embarrased about her scar (and the large pectus she has, keep hoping that will reduce or disappear one of these days!

 

[blessedmom4]

She had just gotten her pacemaker placed about 6 months before recital, so that scar is pretty fresh and red! Of course they had this costume that was pretty low cut. She doesn't care though, I keep wondering at what age she'll start to be embarrased about her scar (and the large pectus she has, keep hoping that will reduce or disappear one of these days!

Lisa says she will NEVER be embarrassed by her scars she earned everyone of them and wears them with Pride. When she was two weeks old, I would sit by her crib in PICU, with her chest wide open and design bathing suits in my head to hide the scars...silly the things that went through my sleep deprived, numbed brain. Her chest is no longer even (one side sits higher than the other)...I got over worrying about that as well. I figure they will reset it when they operate again and as long as she is healthy, so to speak, I am good to go on the scars. I know you feel the same! Your sweetie is BEAUTIFUL!!!

 

[shruley]

Lisa says she will NEVER be embarrassed by her scars she earned everyone of them and wears them with Pride. When she was two weeks old, I would sit by her crib in PICU, with her chest wide open and design bathing suits in my head to hide the scars...silly the things that went through my sleep deprived, numbed brain. Her chest is no longer even (one side sits higher than the other)...I got over worrying about that as well. I figure they will reset it when they operate again and as long as she is healthy, so to speak, I am good to go on the scars. I know you feel the same! Your sweetie is BEAUTIFUL!!!

Thanks. I hope she continues to be proud of what's she lived through! I know in the grand scheme of things it's not a big deal. Actually, when we were in the PICU for the first surgery, one nurse nicknamed her Bubbles and someone else said what a great stripper name. After they calmed dad down they said she'd probably have too many scars to actually be a stripper! Some days I think dad is still counting on that, cause she's got a "dancing on the tabletop" kind of personality. (Free spirited ya know!)

 

[blessedmom4]

Thanks. I hope she continues to be proud of what's she lived through! I know in the grand scheme of things it's not a big deal. Actually, when we were in the PICU for the first surgery, one nurse nicknamed her Bubbles and someone else said what a great stripper name. After they calmed dad down they said she'd probably have too many scars to actually be a stripper! Some days I think dad is still counting on that, cause she's got a "dancing on the tabletop" kind of personality. (Free spirited ya know!)

Only time for a Quick note ( I am cooking dinner). LIsa's is like that as well! She says she is going to be the first Super Model with a lot of scars on her chest and tummy...and I think she just MIGHT be! I will be back.