Bella’s Very Merry WISH-mas Party ~ 10 Days of Dreams Come True MAW/GKTW Dec 3-10

[StefaniLyn]

I only ran into one cranky angel! and it was a young one.. at the xmas party.
YOU want to see santa? uh, yeah!

The guy with glasses was super nice! (at the front desk, right?) He helped us with tons of stuff, and let my mom use his internet, too.

I love your report so far! You're a really good writer

What date were you at the Christmas Party? Was it 12/3? I thought I saw you there, but I was too embarassed to ask you if it was you! I didn't want to freak out someone else if it wasn't you! Does that make any sense?

Yep, that's the guy. Do any Wish Trippers out there remember that guy's name? He really was awesome! Every time I had a question, he was willing and able to help me out! I want to give him some credit when I finally get around to sending in my satisfaction survey.

Oh.......I LOVE that Fairy Tale Forest section!!!!!!! It's so.................I don't know........storybook charm is a perfect description. Now I may not paint my HOUSE that color but for a little kid's magical vacation villa ................PERFECT. The other villas, why certainly 'nice', looked more like houses in a neighborhood.

I'm with you StefaniLyn......Melissa better get her sunglasses ready because she's headed straight for the Forest!!!!!!

Pamela

Oh Melissa - Your future's so bright, you gotta wear shades . . . you gotta wear shades!

Pamela since you saw both, I'm curious whether both villas were identical on the inside (the layout, size of rooms, etc)?

 

[Chelley00]

Okay, so you now have links to about a thousand pictures, so hopefully you'll find a few that will work. I know it won't replace what you lost, but hopefully it will help the girls remember their trip.

 

[pacrosby]

Stephanie,

Yup, the interiors were identical in layout..................and not that much different in terms of interior decor either, just newer.

I can't remember the face of the 'elder' angel who was working at the desk that morning. I do remember the one who quite literally 'yelled' at a little boy for touching the top of the glass in Amberville. That bothered me alittle bit and I felt like going over and 'gently' reminding her where she was. Of course I didn't as it wasn't my place but I do feel like that kind of stuff should not go ignored. The young guy, he did wear glasses. Hmmmmm I wonder if it was the same guy????

Pamela

Matty's Wish Trip PTR http://www.disboards.com/showthread.php?t=2325607

Matty's Wish Trip TR "Mom, Dad, 3 Kids, and a Gingerbread Boy" http://www.disboards.com/showthread.php?t=2356739

 

[praisehisname]

How frustrating that you couldn't get the Angel to understand what you meant. At least it was all good when you got to your villa!

 

[StefaniLyn]

Just had to drop by and say
HAPPY NEW YEAR
to all my DISfriends! You guys and gals are the GREATEST! I wish you all a happy, healthy, and safe 2010 (boy it feels weird to type that!!!)​

 

[All7OfUs]

I'm frustrated for you that you couldn't make this person understand diddly squat. You'd think they'd know more about their own property.

Looks like you're getting quite a few nice offers on your photo gaps! Liking that, for sure!

 

[StefaniLyn]

Okay, so you now have links to about a thousand pictures, so hopefully you'll find a few that will work. I know it won't replace what you lost, but hopefully it will help the girls remember their trip.

THANK YOU for the links to your photos! They will fill in many of the gaps! I spent yesterday pouring over them and adding a whole bunch to my shutterfly cart.

Stephanie,

Yup, the interiors were identical in layout..................and not that much different in terms of interior decor either, just newer.

I can't remember the face of the 'elder' angel who was working at the desk that morning. I do remember the one who quite literally 'yelled' at a little boy for touching the top of the glass in Amberville. That bothered me alittle bit and I felt like going over and 'gently' reminding her where she was. Of course I didn't as it wasn't my place but I do feel like that kind of stuff should not go ignored. The young guy, he did wear glasses. Hmmmmm I wonder if it was the same guy????

Pamela

Matty's Wish Trip PTR http://www.disboards.com/showthread.php?t=2325607

Matty's Wish Trip TR "Mom, Dad, 3 Kids, and a Gingerbread Boy" http://www.disboards.com/showthread.php?t=2356739

touching the top of the glass? really? that's too bad! I hope it wasn't one of your boys!

I'll bet it was the same guy! I really wish I knew his name.

How frustrating that you couldn't get the Angel to understand what you meant. At least it was all good when you got to your villa!

Yes, definitely frustrating, especially since we had already lost time at the airport and were all hungry. But once we were all fed, things were fine.

I'm frustrated for you that you couldn't make this person understand diddly squat. You'd think they'd know more about their own property.

Looks like you're getting quite a few nice offers on your photo gaps! Liking that, for sure!

What was comical for me was that the elder Angel was 'training' the younger one yet the younger one was clearly more knowledgeable, at least about the villas! I mean did she really think someone would show up at GKTW and request to stay in the castle suite at MK?

 

[StefaniLyn]

We have arrived, we have our rental car, we have made it over to GKTW, we have our villa, albeit not a castle, and we are HERE! It’s about time we started having fun, right?

Nope, we need to eat first. I myself was starting to wonder when the fun would begin! But we are STARVING! So we grab Bella’s lunch box with her food in it, a new toy from the bag full of goodies we’d received, and headed straight for Katie’s Kitchen. It was a quick 10 minute walk, but I swear you could hear our tummy rumbles echoing with each step.

Katie’s Kitchen is essentially GKTW code for Boston Market and to those of you who have never experienced the deliciousness of Boston Market, I pity you! Because KK/Boston Market is DELICOUS, and there couldn’t possibly be a better choice of fast food to have available on a daily basis for Wish Families. Mmmmmmmm . . . I could really go for some mashed potatoes and cornbread right now!

It’s always awkward doing something for the first time and ordering at KK was no exception. When we reached KK, it at first appeared closed but before I could break in and rob the place of all its food, DH peeped into the window and caught the attention of an employee. We ordered our food and sat down at an outdoor shaded table to wait. Kennedy wanted chocolate milk but KK didn't have it so she went next door to the ice cream palace. She returned and informed me that they made her chocolate milk with a WHOLE SCOOP of chocolate syrup!

While waiting for our food to arrive, began to feed Bella her meal. Unfortunately, I don’t get a vacation from that.

Prior to continuing, I need to recapitulate a little bit of background information. Ok, let’s be honest, I have yet to give you a ‘little bit’ of anything. I’ve probably written about this before, so feel free to skip the green writing if you’re familiar with Bella’s history.

Born with esophageal atresia (esophagus not connected to her stomach) and a myriad of other health conditions, Bella was fed through a g-tube for the first 4 years of her life. After surgery to correct her esophageal atresia at the age of 3 months, we quickly discovered that not only did she not want to eat, she did not know how – her esophagus couldn’t swallow properly. Bella would aspirate on liquids, and purees caused her to gag and vomit.

When she was 2, Bella went through an intensive inpatient feeding program at Children’s Hospital of Wisconsin. A team of doctors and psychologists attempted to teach Isabella how to eat. They failed – she was too stubborn. They tried again when she was 3. They failed again. Bella is the ONLY child in the history of this program to fail twice. It is not an accomplishment I ever wanted her to achieve.

After two failures, doctors at CHW recommended a 3 month inpatient program in Baltimore, Maryland. At the age of 4, Bella and I spent and entire summer in Kennedy Krieger Institute (next door to Johns Hopkins Hospital) where she successfully learned to swallow pureed food and drink liquids. Unfortunately, it is still very difficult and scary for Bella and she would rather starve than eat a single bite of food. However, as she no longer has a g-tube, so we must make Bella eat enough calories each day to sustain her.

Making Bella eat is difficult. Even at 5 years old, we must still scoop bites of food (only thin pureed foods – any texture, like applesauce, will make her vomit) onto a spoon and feed them to her like an infant because she won’t do it herself. She will fight off anyone who tries to feed her if she has decided she doesn’t want to eat. And despite her small size, she is strong. Although she refuses, fights, and sometimes throws up, we reward her for every single bite of food she does take. Rewards include stickers, watching tv, playing with toys, and whatever other motivation we can find.

Feeding Bella doesn’t look pretty. We feed her according to a specific protocol designed by a team of doctors. We use a method called escape extinction which essentially means the bite of food stays at her lips until she takes it. She can hit me, hit the spoon, turn her head, and even bite me, and my job is to keep that spoon by her lips. At times it can resemble force feeding. Needless to say, meals can get long and ugly. A good meal takes 15-30 minutes, but a bad one can take over an hour to eat a mere 3 ounces of pureed food and drink 9 ounces of milk. During difficult meals, Bella will frequently scream, cry, plead for help (which gets us some interesting looks from strangers!), throw food, and occasionally vomit.

And as if the difficulty swallowing and fear of food wasn’t enough, Bella’s body seems to reject food. Eating any amount of food will cause Bella’s blood glucose to spike to well over 200 within 15 minutes of eating. This spike causes her to feel very hot, lethargic, and nauseous. She will also complain of a headache (especially when it is hot outside), belly ache, and heart palpitations. Essentially, food makes her feel miserable and it takes about an hour before her blood sugar returns to normal. She does not have diabetes. The cause of these spikes is unknown, other than it is induced by food. She is currently on several medications to reduce the height of the spike, but her team of doctors continues to be baffled by the cause or cure.

I just wanted to add this section because throughout this trip report, you will often read about how good or bad Bella’s meal went. To be truthful, Bella’s meals run our lives, decided where we go and when, and can determine the general mood of the day. Bad meal = bad mood = bad day. And vice versa. It is a lot of work, and can be stressful. We make and puree most of her food to ensure that it is pureed thoroughly, calorie packed, and free from gluten contamination (oh yea, did I forget to mention she has celiac disease?). Yogurt and pudding packs are a staple for her. I pray before each meal that Bella will simply accept her food and cooperate, but that prayer more often than not falls into the same category my flash drive sits in now – unanswered. But alas, I know Bella’s life depends on her eating and consider feeding her a labor of love.

While waiting for our food, I attempted to feed Bella. Unfortunately, being on a Wish Trip doesn’t change the fact that Bella hates to eat. It had been 6 full hours since her breakfast, and Bella wasn’t a bit hungry. I kid you not, Bella has gone for nearly a full week on just IV fluids without a single bite of food and never complained of hunger. The fact is, Bella's fear of eating food by far overshadows any pleasure she might obtain from its taste. Even the new toy wasn’t motivation enough for Bella to eat her pudding for lunch.

Bella at first refused to eat anything. She cried when I gave her medication, and threw herself to the ground when I opened her food bag. This is very typical. After she screamed her way through a few bites (thankfully, nobody was around), she realized it was futile and began to cooperate. By the end of the meal, we were racing to see who could finish our drinks first. It was a pretty average meal for her.

Our food arrived quickly and we gobbled it up. I ordered the pot pie. It was delicious. Wait, delicious is an understatement. DH had a bbq pork sandwich, DMIL ordered tuna salad. They ended up going halfsies and split both. DD10 had the meatloaf sandwich, and DD8 had a chicken ceasar salad. We shared sides of cornbread, mashed potatoes, chicken noodle soup, and mac and cheese.

A half hour later, we were stuffed, and finally ready to have some fun exploring GKTW! First up on our list was Amberville!

Act 1: Scene 6 - Fun Times in a Special Place Called Amberville

 

[kimmylaj]

can you believe i have never eaten boston market? and its only about 5 minutes from my house. guess i'll give it a try.
and wow i read bellas pre trip about the feeding and believe it or not i had seen her youtube video before i ever read about you guys on the dis. but i did not realize what a struggle it still is to get her to eat. i promise to never complain about my picky eater son again. ( and having a newly diagnosed nut allergy is not a fun thing to add to the mix lol)

 

[thatkid]

We ate at katie's kitchen once, my family really loved it. They always got the chicken & potatoes, not very creative LOL.
I was at the xmas party on the 3rd. We didn't stay for long, we didn't even see the parade.

 

[StefaniLyn]

can you believe i have never eaten boston market? and its only about 5 minutes from my house. guess i'll give it a try.
and wow i read bellas pre trip about the feeding and believe it or not i had seen her youtube video before i ever read about you guys on the dis. but i did not realize what a struggle it still is to get her to eat. i promise to never complain about my picky eater son again. ( and having a newly diagnosed nut allergy is not a fun thing to add to the mix lol)

Oh you MUST try Boston Market! Their cornbread is to die for! And I am a huge fan of their pot pies - big enough for two adults to split!

That video has become somewhat famous (or rather, infamous ) in the intensive feeding program world. I was advised to remove it, but decided to leave it up as a resource for other parents. I continue to be contacted on a regular basis by other families who are struggling to get insurance approval for their child's feeding program. It was a drastic measure, but it worked and that is all that matters in the end, right?

Bella was very successful at KKI and her g-tube was removed shortly after we returned home. However, about 3 months after she was discharged, we started dealing with pancreatic insiffuciency and blood glucose issues both of which made Bella very sick when she ate and her refusals got worse and worse. We could probably benefit from another stint at KKI, but I just don't have another 3 months to spend halfway across the country nor do I have the OOP funds it cost us. Additionally, until they figure out the cause of her discomfort, it wouldn't do any good anyway.

And nut allergies are very scary. I was so thankful the day we were able to get rid of Bella's epi-pen! I pray you never need to use yours!

 

[StefaniLyn]

We ate at katie's kitchen once, my family really loved it. They always got the chicken & potatoes, not very creative LOL.
I was at the xmas party on the 3rd. We didn't stay for long, we didn't even see the parade.

I'm sorry we missed you at the Christmas party! I think I saw you a handful of other times at GKTW as well. I truly enjoyed reading your trip report - you finished it so quickly!!! and here I am, still on day one of mine

 

[kimmylaj]

i'm not sure why you would be advised to remove the video, it makes a really strong statement and it helped do what you needed it to do. i'd be very proud. i was watching a video about a caringbridge kid and bellas was on the little side pop up and i have to say she was so cute. when i saw you post her on here i went omg it is that adorable little girl again.
nut allergies are really scary and since he was eating nuts with no problem until he was 6 it is kinda a big adjustment. he is at the i hate birthday party stage right now which is sad but i just send him with his own cupcake. i pray daily i will never need to use the epipen, but at a family party with an assortment of nuts last month, he had 2 issues his eye got all swollen after a cousin touched him and he had a major coughing fit after kissing his grandpa goodbye. benadryl worked thank goodness but i am very scared. and to boston market i go. i do love me some cornbread

 

[StefaniLyn]

i'm not sure why you would be advised to remove the video, it makes a really strong statement and it helped do what you needed it to do. i'd be very proud. i was watching a video about a caringbridge kid and bellas was on the little side pop up and i have to say she was so cute. when i saw you post her on here i went omg it is that adorable little girl again.
nut allergies are really scary and since he was eating nuts with no problem until he was 6 it is kinda a big adjustment. he is at the i hate birthday party stage right now which is sad but i just send him with his own cupcake. i pray daily i will never need to use the epipen, but at a family party with an assortment of nuts last month, he had 2 issues his eye got all swollen after a cousin touched him and he had a major coughing fit after kissing his grandpa goodbye. benadryl worked thank goodness but i am very scared. and to boston market i go. i do love me some cornbread

I am proud of the video, and it will stay unless I am ordered to remove it. Several people, including the KKI attorney, thought that UHC might be able to come after me if I didn't remove it since they did eventually provide coverage. Coverage or not, it doesn't erase the 6 months of h*** we went through while they made their decision. But seriously, what are they going to come after?

Birthday party time is a nightmare for us, and Bella doesn't even eat anything! But she is constantly offered items that would make her very sick if she even tasted them. I can't imagine how you deal with it. Bella has learned to ask if foods have any gluten in them, but most people don't know what gluten even is. I just end up staying with her for all parties she is invited to.

I can't even imagine how you deal with parties, school treats, or even airlines for that matter! It's great that you are so on top of things though! How scary that a kiss from grandpa can cause a life threatening reaction! Does your DS carry his own epipen on him? I've seen them hooked to belt loops with a caribbeaner before but not sure if that is age appropriate for him.

Are you really going to Boston Market tonight? That's AWESOME! Mmmmmmmmmmm........

 

[pipersmom]

We looove Boston Market, but we don't have one around here, so we're really looking forward to Katie's Kitchen. I can't even imagine what Bella's feeding regimen must have done to you at first, there are still times after Piper has to go through something stressful at club med that I get through it fine, then have to leave the room so I can cry without her seeing me. Sometimes doing what our kids need the most is the hardest thing for us to do. Can't wait to read more about your first day!!

 

[StefaniLyn]

My original plans called for Grandma to explore GKTW with the girls while DH ran to Wally World and I unpacked. However, because of the delay and frustration during check in, it was decided that we ALL deserved a little fun so off to Amberville we went!

Quick, super special story to share here. After posting photos of Amberville on my facebook page, I learned this interesting bit of information from one of Bella’s former speech therapists who commented on the photo above. We live in Jefferson County and until Bella turned 3, her speech services were provided by Jefferson County Birth to 3 program. Lynette Holman was Bella’s service coordinator for B-3. Lynette and her daughter, Amber were at GKTW in 1993, and Amber be came so ill she required an intensive care visit. Henri Landwirth, the creator of GKTW, offered the family use of a private jet and arranged for Mickey Mouse to visit Amber in the hospital. Sadly, Amber eventually passed away from Batten’s Disease but in her memory, Henri Landwirth named this special place after her - Amberville.

Think of Amberville as somewhat of a clubhouse for GKTWVillage – it has lots of fun activities to entertain guests of all ages. The girls found so many fun things to do there that we honestly could have stayed all day!

As we entered the building, the girls saw r/c boats and steered themselves in that direction first.

The girls had a blast racing the remote control boats. A wonderful GKTW Angel clued us in to which ones were the fastest and we enjoyed racing as well as a little bumper boat action!

I had an entire series of photos from Amberville, but they are among those lost in the FDF09 (Flash Drive Fiasco of ’09) so I’ll do my best to recreate the moments for you with the help of some GKTW stock photos.

After boat racing and bumping, AJ and I played a game of pool. I won, I won, na na na na boo boo! Hey, the kid's 10 years old now, I am so done letting her win. Especially since she beats me half the time anyway without my help!

while Kennedy enjoyed the trains

and Bella had fun in the video arcade.

This is where 3 adults really came in handy!

The train set up they have there is amazing. I was enthralled with it and I must think any train enthusiast (i.e. Lucas) could spend their entire vacation in this one single room. Why is it still so much fun, even as an adult, to push buttons and make things go?

We contemplated a round of mini-golf on Mark’s Dino Putt,

but were informed that several of the holes were under water due to the recent rain and the course was closed.

After and hour in Amberville, we returned to the villa. We quickly unpacked (my meticulous packing made unpacking a breeze) and setteled ourselves into our villa. I was finally starting to get over the castle debacle.

We debated our plans for the rest of the evening. By now it was 4:30 and GKTW Christmas was set to begin in 2 hours. It was agreed upon that DH and I would go to WalMart together and Grandma would take the girls to explore more of GKTW until we returned. So we headed off in opposite directions with cell phones to keep in contact. On our way out, DH drove us through the Fairytale Forest and I saw not just 1, but 3 unoccupied castle villas. Ok, maybe I wasn't quite as over it as I claimed to be!

We shopped quickly at WalMart thanks to a prewritten list I had brought along. Food, toiletries, beverages for the fridge, a cheap blender for Bella’s food, and some snacks. We returned to the villa, put away the groceries, and called Grandma.

Grandma and the girls had made their way over to the Fairytale Forest section of GKTW. Remember, the one with all of the CASTLE villas? I was worried that Bella would see one and FREAK OUT about staying in a castle. I asked Grandma if Bella had noticed the castle-themed villas. Bella had mention them once, but paid no attention to them after that and never even mentioned staying in one. Whew – I guess it wasn’t such a big deal after all.

Grandma and the girls were having a blast on the Candyland playground. This AMAZING, playground:

We picked them up in the minivan (our villa was all the way across GKTW from the Fairytale Forest and we didn’t want to make them walk back) and brought everyone back to the villa.

It was nearing 6:00 by now and despite eating a late lunch, it was nearing time for dinner. We quickly dressed for the Christmas party.

Act 1: Scene 7 - Adorable Christmas Pixies Meet Mrs. and Mr. Claus

 

[StefaniLyn]

We looove Boston Market, but we don't have one around here, so we're really looking forward to Katie's Kitchen. I can't even imagine what Bella's feeding regimen must have done to you at first, there are still times after Piper has to go through something stressful at club med that I get through it fine, then have to leave the room so I can cry without her seeing me. Sometimes doing what our kids need the most is the hardest thing for us to do. Can't wait to read more about your first day!!

Our nearest Boston Market is an hour away and I'm going through withdrawls now! You will love it when you get to GKTW. They even deliver direct to your villa door!

I used to cry after every single meal when feeding Bella. Literally. Every. meal. But like you, I have learned the 'suck it up now, cry later' method to deal with difficult medical procedures and other painful things Bella must endure.

Why are we as parents forced to do things to our children that causes them pain or discomfort just to keep them alive? I hate it . . . I hate poking her fingers 6 times a day until they are raw from taking her blood sugar levels. I hate watching her repeatedly hit her own head against the back of a chair in frustration because she doesn't want to take a single bite of food that I am holding to her lips. I hate that I have taught myself to hold in the tears and pretend that everything is fine when all I want to do is scoop her up and run away to a safe place. Ugh. It sucks, and I know you get it too.

LOL, you didn't have to wait long! The next update is here already!

 

[pacrosby]

I could look at those pictures all day!!!!!

I feel for you re: the eating situation. Matty didn't eat anything solid until well past three years of age and projectile vomiting of formula/pediasure was an everyday occurance (my carpets were a daily reminder). It was like clockwork.....................45 minutes after he ate.................there it'd go (well, I'm laughin' now). Then when he finally would take solids (if that's what you'd call thinly thinned puree) it would take forevvvvvvvvvvver and like you, I'd cry my way through it. I can remember the looks I'd get if I had to feed him in public..................I often feared someone was going to call the authorities and say I was abusing my baby (in the way of force-feeding). Now Matty eats like a pig but still doesn't gain any weight. He's BELOW the first percentile!!!!


Anyway, glad to take part in your trip here. I'm on a bit of a hiatus from writing mine while I deal with my photopass pictures (what a nightmare!!!!)

Pamela

Matty's Wish Trip PTR http://www.disboards.com/showthread.php?t=2325607

Matty's Wish Trip TR "Mom, Dad, 3 Kids, and a Gingerbread Boy" http://www.disboards.com/showthread.php?t=2356739

 

[that's nice]

I've been away from the DIS again. I know... bad DISer! LOL

I'm sorry you didn't get a castle villa, but as you said in your last post, Bella didn't seem to mind!

I find it funny that your 'Angel' didn't know what you were talking about. Maybe they need to take refresher courses.

We love Boston Market! We don't have one near us anymore though.. the food is really good!

Well, I'm all caught up now! Happy New Year!

 

[jessica52877]

I finally caught up with the TR! I have been reading here and there and had to stop looking on facebook! I get too excited and always want to look ahead but then I was slacking on reading over here!

Of course, I looked again this morning!!

Your girls are just adorable!! What a sweet but sad story about Amberville. Such a nice memory though and wonderful that you actually know the lady. It breaks my heart she lost her Amber though!

Thank you for sharing your ordeals with feeding Bella. I had no idea. It makes me appreciate life even more hearing all these stories. I will also think twice if I ever see someone feeding a screaming child. I am sure it must be so painful for you to do and so great for her to endure. But I know it it is best for her!!!

Can't wait for the next installment!