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Old 01-02-2010, 06:43 PM   #91
StefaniLyn
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Originally Posted by kimmylaj View Post
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!
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Old 01-02-2010, 06:47 PM   #92
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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
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Old 01-02-2010, 06:55 PM   #93
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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
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Old 01-02-2010, 07:30 PM   #94
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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........
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Old 01-02-2010, 07:44 PM   #95
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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!!
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Old 01-02-2010, 08:05 PM   #96
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Act 1: Scene 6 - Fun Times in a Special Place Called Amberville

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

Last edited by StefaniLyn; 01-07-2010 at 09:29 PM.
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Old 01-02-2010, 08:39 PM   #97
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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!
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Old 01-03-2010, 03:26 AM   #98
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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!!!!)

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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
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Old 01-03-2010, 07:49 AM   #99
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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!
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Old 01-03-2010, 09:21 AM   #100
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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!
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Old 01-03-2010, 09:29 AM   #101
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that story about amberville gave me chills. i knew he was an amazing man, but talk about going above and beyond. heartbreaking though. you guys seem to be having such a great time at the resort.
and nope ryan does not carry his own epi pen. he would never give himself a shot, so the school nurse has one and we have one.
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Old 01-03-2010, 10:23 AM   #102
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Originally Posted by StefaniLyn View Post
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!
I love Boston Market! That is so cool that they had one at GKTW for you!!!


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While waiting for our food to arrive, began to feed Bella her meal. Unfortunately, I don’t get a vacation from that.
Wow, I had no idea how involved Bella's feedings are. I'm glad you were able to achieve some level of success from KKI.


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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!
Sounds and looks like a really fun place to hang out!

Looking forward to hearing about the Christmas party!
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Old 01-03-2010, 11:36 AM   #103
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Wow looks like you had alot of fun. I've had to do things for my son that were best for him medically but made me cry but I can't even imagine what you go through with Bella's feedings. I so sorry you have to go through that You've made me crave Boston Market! I may just have to make the forty five minute drive to the nearest one as soon as it stops snowing and the roads clear up soime.
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Old 01-03-2010, 11:45 AM   #104
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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
Ahhhh . . . I remember those days. Bella's bedroom lacks carpet for that very reason! And thanks to pediasure, the smell of vanilla will never appeal to me again. Did Matty go through a feeding program or eventually just learn on his own?

I actually carry business cards with me that briefly explain that what we are doing is a protocol recommended by a team of physicians at KKI and have the phone number for Bella's feeding psychologist on them. I hand them out to anyone who looks like they might consider calling social services on us!

What happened with your photopass pictures? Oh no!

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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!
Welcome back Tim! Most of the GKTW Angels are incredibly knowledgeable and helpful. We just happened to get the one who thought I was asking to stay in Cinderella's castle! Sheesh.

Mmmmm . . . . next time I'm in Milwaukee I think I will need to stop by Boston Market and pick up dinner. GKTW has renewed my old addiction for it!

And Happy New Year to you too!!!

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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!
It is hard to stay caught up on both Facebook and DIS, isn't it? While the DIS was down and unavailable last night I took the time to upload more pics to FB.

Lynette actually lost 2 children to the same genetic disease. I cannot even imagine. So sad.

I enjoy sharing Bella's story. I know there are other families out there dealing with the same stuff and sharing her story helps me connect with them and not feel so alone. And while it is difficult to feed Bella, we do what we must because it is what she needs.

It always catches my attention when I am tagged in someone's photos that I have never met in person too!

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Old 01-03-2010, 12:07 PM   #105
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I love Boston Market! That is so cool that they had one at GKTW for you!!!

Wow, I had no idea how involved Bella's feedings are. I'm glad you were able to achieve some level of success from KKI.

Sounds and looks like a really fun place to hang out!

Looking forward to hearing about the Christmas party!
Bella was so successful at KKI and it breaks my heart that all of her hard work has gone down the drain mostly because of new and undiagnosed health issues. Had she continued to progress, she might be eating some solids now. Maybe someday . . . .

I'm writing the Christmas party update right now!


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Wow looks like you had alot of fun. I've had to do things for my son that were best for him medically but made me cry but I can't even imagine what you go through with Bella's feedings. I so sorry you have to go through that You've made me crave Boston Market! I may just have to make the forty five minute drive to the nearest one as soon as it stops snowing and the roads clear up soime.
Thanks for the hugs. I'm sorry you have had to do difficult things for yoru son as well.

Where are you that it's snowing?

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that story about amberville gave me chills. i knew he was an amazing man, but talk about going above and beyond. heartbreaking though. you guys seem to be having such a great time at the resort.
and nope ryan does not carry his own epi pen. he would never give himself a shot, so the school nurse has one and we have one.
I would love to meet Henri Landwirth one day. He's seriously my hero. What an amazing man! I aspire to be as generous as him one day.

I hope the school nurse never has to use Ryan's epi-pen.
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