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Old 01-31-2009, 10:41 PM   #1
LoveTheseKids
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A Wish Trip For Princess Kate

Hi all. I'm going to see if I can do this. I'm new to the boards, but I have to try!

We will be at Disneyworld for Kate's Wish Trip the last week of Feburary!

Our cast members include:

Me, Dayna
My husband, Brian

Our kids are:
Charlie 8 (2nd grade) - our highly intelligent history buff, who knows more about the cold war, wwII, the civil war, animals and the presidency than most adults (this writer included, the Animal Kingdom will be hell for me as he lectures me on the animals and their habitats). He does get sidetracked by Star Wars, and he LOVES Mission Space.

Kate 6 (1st grad) The princess, she's smart, and VERY social (we call her the cruise director) and she loves all the rides and says she could never pick a favorite, they are ALL great. She is our horse lover, everything is all horses in her world.

Tommy 4 (turns 5 in 11 days, preK) He's our little clown, loves to laugh, joke, and has eyes that could pierce stone. He LOVES space mountain and Tower of Terror (which he began riding at 3...did I mention he's tall?)

We are a slightly unique family, all three of our children qualify for a Make A Wish. All three kids were born missing part of their immune system, and require GammaGard Liquid, which is basically human plasma that has been processed to remove the antibodies that they are missing (some people call their medicine IVIG). Charlie and Kate get it weekly sub-q, and Tommy gets his IV every three weeks. Both Charlie and Tommy have what can be described as immune related arthritis.

Our oldest, Charlie did his wish when he was 5, Kate 3 and Tommy 1, he also choose Walt Disney World. It was a good trip, fun, and very memorable, but we are VERY excited that this trip they are all older, more self sufficient, and will all remember it. When Charlie had his wish, he really NEEDED something to look forward to - he had a difficult year, with 2 hospitalizations, and was really struggling with what his disease meant to him.

Kate, now 6, asked to do the same wish as her brother, her memories are more of the village, which she LOVED, in fact, her wish was to go back to the Village, and go to the Animal Kingdom Lodge. Make A Wish has given her a 6 night, 7 day trip to Give Kids The World, and we have extended for 2 nights at The Animal Kingdom Lodge.

The timing of this trip could not be better for Kate. She has switched from the IV way of doing her medicine to the Sub-q way. Kate is a very private little girl, in so much as, she doesn't want her friends to know that she is different, that she is sick, that things are harder for her. It became a big issue because she was hospitalized for the second time for severe sinusitus, and needed a pICC line for IV antibiotics, and was cleared to return to school. She wanted to just pretend there was not a tube hanging out her arm, and that no one would notice.

She's struggling with who she is, and how her disease fits into that. She's only 6, and it seems soo young to struggle with such big issues. She's begun asking questions that break a mothers heart, like if God forgot her, or if she was being punished by being sick, shes asked questions about things like if she was born into another family if she would have been sick. I think, right now, she needs something to look forward to, and something to hang on to.

Kate is truly a beautiful child, which I think adds to how hard this all is - she looks perfectly normal, perfectly healthy, which makes others not understand what they go through (we call this the curse of looking good). We had a really hard time when the kids were being diagnosed to even get someone to listen to us because they didn't look sick.

Kate was actually our first child diagnosed. Shortly after I found out I was already pregnant with our youngest, and then, our oldest son was diagnosed (he was almost 3) and then we had Tommy, the baby, and he was diagnosed at 6 months. This is, of course, not what we planned for their life, but we are ever so grateful for the people who donate the plasma that becomes the kids medicine, glad that the medicine allows them to be able to do stuff like this.


Our family has had a huge love affair with Disney. We live in Southern California and spend a lot of time at Disneyland. It holds a very special place in our hearts, it's the place we always took our kids after their infusions when they were younger. My husband placed Kate's first infusion needle when she was just 20 months old, having her first infusion, and the nurses couldn't get the line (he's was a flight paramedic on a helicopter), it broke his heart to have to do that to his little girl, so the next day he took her to Disneyland, just the two of them, and was able to arrange a private meeting with Snow White for her, where Kate, then 20 months showed Snow White the 6 spots where her veins had blown the day before. We plan to go to Disneyland the day before we leave for Disney World, and my husband has some suprises up his sleeve for our daughter while we are there!

We're on our count down we leave in 24 days!!!

Did I get this right? We plan to go to all four parks, but will likely take it on the slow side - we won't stay late most days, as the kids ALL suffer from fatigue, especially the boys. Kate really wants to do the Bippity Bobbity Botique, and wants to just explore all the parks!

Dayna


I'm trying to figure out how to post a picture of the kids but in the mean time - my blog is www.lookthroughoureyes.blogspot.com
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Old 01-31-2009, 11:21 PM   #2
mindymouse1
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I can't wait to read all about it!!!

The kids sound wonderful!!

I also have a horse lover and if Kate is anything like mine it will last forever. Which is only a good thing!!

I hope you all have a magical trip with lots of !!!
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Clint's Make A Wish Trip (GKTW) - Feb 2009
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Old 01-31-2009, 11:22 PM   #3
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Great start to your pre-trippie! Went and took a look at your blog. Your kids are way too cute. So happy that Kate is getting a wish trip just when she needs something to look forward to.

Look forward to reading more.

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Old 02-01-2009, 05:37 AM   #4
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Great report beginning, I look forward to seeing y'all at GKTW. My daughter is a horse lover as well and rides both fall and spring for therapy. She is also at that age of asking the same questions and noticing something isn't the same between her and her friends and since she can't run as fast is getting left behind by some of those she would like to be friends with. It breaks my heart that I can't do anything about it.

Enjoy all the planning and if you get a chance look into the littlest hero project. We found a wonderful photographer that I'm going to post about in our PT Report.
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Old 02-01-2009, 08:35 AM   #5
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Sounds great! Kate and Nick are the same age! I will have to get Nick over here to check out your blog, he has never seen anyone his age with his disorder. Only twice has he ever seen anyone at the infusion clinic getting IVIG at the same time as him.. one was an adult and the other a very older boy who was nonverbal.
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Kayla, Noah and my wish child Nicholas .

Nick's pre-trip report - http://www.disboards.com/showthread....8#post28150528
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Old 02-01-2009, 09:30 AM   #6
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so glad to see you report
Kate's letter on your blog made me it was so sweet
I can't believe you kids do Sub-Q my friends dd stopped and went back to ever 21 days IVIG because she says it hurt to bad she was 16 at the time
there is no way Jason would do it he freaks out enough getting poked in his port
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Old 02-01-2009, 11:04 AM   #7
maroo
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Wow...

Your kids are beautiful!

Bless their heart! And yours!!

I didn't realize there was even a SQ way to get IVIG? Learn something new every day!

Charlie and William would get along so well! They sound SOOO similar. William LOVES history and certainly knows WAY more than I ever will. He also loves Star Wars. Particularly those lego sets they have for Star Wars.

You guys are old hats at this, so you know that you will have a BLAST!

I use photobucket to get my pictures on the disboards. It is easy to load them and I usually just resize all of mine to "Large"...but some folks do medium. Then you can just "copy" the "direct link" onto the pre-trippie and you have pictures!

Great job!

I will put a link to this on the Wish Trippers Thread, too...so we can all follow your planning, etc!

Do you have dates?
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Old 02-01-2009, 11:53 AM   #8
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What a great pre trip report, gosh three kids with medical issues, how do you do it? My heart goes out to you.

So your a pro at the MAW Disney trip....do you have any tips to share with us? We are not going until the end of March so we have some time.

Can't wait to read and hear all about it when you get back!!!
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Old 02-01-2009, 06:16 PM   #9
LoveTheseKids
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Hey everyone! Thanks for all these replies! We are so excited! Thank you also to those that checked out our blog!

We don't have a ton of things planned - we know we want to go to all four Disney parks, we know that our kids LOVED and I mean LOVED Universal when we went for Charlie's trip. They were UNBELIEVABLE there, and I honestly mean, phenominal to the kids. We are season pass holders at Sea World, here in California, and love it, so we will for sure spent a day there.

We extended for two days, and will spend those at the Animal Kingdom which is the park we did not go to the last time we were there.


As for the three kids with medical issues, I know this sounds funny to others, but this is our only point of reference. We only have kids with medical needs, and in many many ways it makes it way easier then many other families. For us, we've never ever known anything else, so unlike, say a child with cancer - we never had a period of health and suddenly our world was turned upside down. Also, unlike families who have 1 chronically ill child, and others who are healthy - we also have no sense of what it would be like to have a healthy child, so this is really all we know. I will say, we are very busy. This week, all three kids are being infused...on three differnt days...in two different locations. We have days where we are very overwhelmed - but we also feel totally grateful that there is medicine - that people donate plasma, and that people collect it, and that we have treatment options. I think, also, we have so many friends whose kids are terminal that we spend a lot of our time saying "This could be worse."


So.... any input - what should we not miss???
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We're going on Kate's Make A Wish!!!

Pre Trip Report:
http://disboards.com/showthread.php?...3#post30019103
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Old 02-01-2009, 10:31 PM   #10
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great start , checked your blog too, beautiful family and what a sweet letter
as for what not to miss i have never been to disneyland maybe some day soon.
but my tops for magic kingdom are mickeys philharmagic, peter pans flight and believe it or not tomorrowland transit authority
epcot-soarin , the little shows around the world showcase like the balancing act in china, the candymaker in japan-miyuki
dhs- i love beauty and the beast and lights motor action stunt show
ak- bugs life is lots of fun
those are some of my faves not including all the biggies which of course are great.
my favorite meal was at 1900 park fare with cinderella and her stepsisters too funny
also scifi- the food is equal to a diner but it is such fun to sit in the car
have fun ... being there is great but i love planning too.
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Old 02-01-2009, 10:45 PM   #11
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What a beautiful family you have! Your pictures on the blog are amazing and Kate is beautiful. Looking forward to meeting you all.
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Noah's Wish Trip Feb 24 - March 10
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Old 02-04-2009, 08:09 AM   #12
LoveTheseKids
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Thank you so much for all these wonderful comments and suggestions - We are big time Disney people, we're at Disneyland quite a bit, so I'm thrilled that Kate gets to enjoy this trip to DIsney World.

I had totally forgotten about Micky's Philharmagic, we'll have to make sure the kids see that!! I asked my husband to call about 1900 park fare. We tried to get into the other one at the castle, but everything was booked .

Thank you also for the comments about the blog (which I'm updating this morning about the trip)!!

Again, being so welcomed here to learn from everyone and share our excitment is so nice!!
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We're going on Kate's Make A Wish!!!

Pre Trip Report:
http://disboards.com/showthread.php?...3#post30019103
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Old 02-04-2009, 09:34 AM   #13
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Nick is home sick today so I should have some time to sit and look at your blog with him when he is feeling up to. Are you guys going to the IDF conference? We wish we could have swung it but airfare is just too much for us right now.
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Kayla, Noah and my wish child Nicholas .

Nick's pre-trip report - http://www.disboards.com/showthread....8#post28150528
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Old 02-08-2009, 08:40 PM   #14
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Quote:
Originally Posted by mom2lilnick View Post
Nick is home sick today so I should have some time to sit and look at your blog with him when he is feeling up to. Are you guys going to the IDF conference? We wish we could have swung it but airfare is just too much for us right now.
we are not going either I would have loved too
we do go to our local meetings 2x a yr
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Old 02-08-2009, 10:48 PM   #15
OrangeRabbit
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We just got back last night from GKTW/WDW and we were able to get into the castle for lunch on the day of. We went up to the podium and said we were on dd's wish trip and asked if there was any way to get in. They said come back in ten minutes, we did, and we got in. So you may be able to get in still. It was a rainy day, so I don't know if that had anything to do with it.

Also, they are opening up a spa at GKTW soon. It was on our comment card (and I thought 'what spa, I never saw a spa?') and then before we left the village on the last day we saw people going into a closed room in the Castle of Miracles with an armload of super fancy kid dresses. We got a little peek as the door closed and it looked close to done. It may be open by the time you get there!!
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