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Old 06-30-2008, 07:49 AM   #46
HeatherN
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Originally Posted by bellasmommy0 View Post
It sounds like you are all going to have a WONDERFUL time. Your kids are both gorgeous!! Hanna is going to be so excited when she sees the princesses! I am definitely subscribing to your thread and cant wait to hear how your trip goes!

My BFF has a little girl born in Jan, that has Downs. She had heart defects, and they said she was going to have to have surgery at about a month old, but she has done well (Well after some feeding diff.), and surprised everyone including the cardiologist, and it looks like she may not need surgery after all, and actually is starting to get weaned off of some of her meds!! She is a miracle baby in many ways!! I cant wait till she is old enough for us to convince her mom she needs to go to Disney!!

Have FUN!!
Thank You!!! How great that the baby is doing better heart wise than expected! If your friend spends any time online you should have her check out www.downsyn.com. There is an amazing forum there.That is my home away from home , besides here of corse. It is a huge group of amazing and supportive people.
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When you wish upon a star- Hannah's Make a Wish trip report: http://www.disboards.com/showthread.php?t=1852434
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Old 06-30-2008, 10:44 AM   #47
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Thank You!!! How great that the baby is doing better heart wise than expected! If your friend spends any time online you should have her check out www.downsyn.com. There is an amazing forum there.That is my home away from home , besides here of corse. It is a huge group of amazing and supportive people.

I will tell her about it, I know she goes to some different web sites online, but I dont know if that is one of them. After the baby was born she went through the normal OMG what am I going to do, so I told her that as much as I can be supportive of her she needed to find other downs mom, so that she could see that it wasnt the end of the world. So she got into touch with a group here in town, and that helped alot! And then she has done alot online. And now the only thing she has to be careful of is comparing her to other babies her age in daycare because she is not as strong, but she is doing amazingly well.
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Old 06-30-2008, 01:26 PM   #48
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Updates on Trip?

Do you have any updates on the trip, Heather?

Bill
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Old 06-30-2008, 01:48 PM   #49
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Do you have any updates on the trip, Heather?

Bill
Not really Bill, Things have been kind of quiet lately as far as the planning goes.We have our dates, plane reservations etc. Now just kind of holding on waiting for the next step. I imagine in a week or two we should be hearing from our wish team about finalizing everything.I spent the morning printing pages for the kids autograph book.Every time I go to the store I find an excuse to but some little thing that would be "great for disney" It's kind of an obsession.

This past weekend was busy. I attended my 20 year high school reunion. It went amazingly well, was well attended and best of all I had so much fun.It was nice reconnecting with old friends.Hannah is getting better after having strep throat, a sinus infection and pink eye last week.She will be having oral surgery on some baby teeth(they don't fall out on their own)on Wednesday.Tomorrow she actually starts summer school.She goes every year-not because she does not do well academically but it gives her an opportunity for structure and to keep recieving speech therapy and occupation therapy(for fine motor skills)She seems to enjoy spending time with her friends there.

The big news that I have involves this board.About a week ago I was contacted by a forum member who frequently posts in the Disney for families section.There is a thread and they call themselves the DISboutiqers.They do amazing clothing (disney themed ) for kids.They chose Hannah to be a recipient of what the call "The BIg give". At first I thought they were going to come up with a few t shirt designs I could print but then I soon realized they sew whole outfits for kids and would be giving Hannah and Logan outfits for our trip! I am still in a state of shock that total strangers have chosen to do this-free of charge to us, simply because they want to "spread some pixi dust around" and make our trip more magical. They are all amazingly talented.The designs I have seen are GORGEOUS.It is very obvious that they have huge hearts full of love and we will be forever greatful.I am in tears when I realize the magnitude of it all. I have heard that some people have things completed and I promise to post pics and give credit to all the wonderful people involved in this.I am sure I will have lots more to post about this in the next few weeks.
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When you wish upon a star- Hannah's Make a Wish trip report: http://www.disboards.com/showthread.php?t=1852434
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Old 06-30-2008, 02:07 PM   #50
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Trip Outfits

WOW! Heather, that is all I can say. That is so awesome about the DISboutiquers. This is such a wonderful place to meet wonderful, caring, sharing people. This is a part of the MAGIC that Uncle Walt continues to inspire. Isn't it fun to be one of the ones who "get it?"

I am really looking forward to seeing what they make for y'all.

Blessings,

Bill
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Old 06-30-2008, 02:12 PM   #51
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The Disboutique thread is where I first heard about your trip/trip report. I'm not a part of your Big Give but the ladies that are doing yours are amazing! I can't wait until you post pics of what you recieve. I've seen some of them and they are beautiful!!!
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Old 06-30-2008, 10:27 PM   #52
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The "Big Give" sounds awesome!!! I can't wait to see the outfits that they sew. I am always in awe of those who can sew complete outfits. I can sew a little...mainly straight stitch and zig zag.
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Old 07-01-2008, 07:59 AM   #53
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Heather, I am love, love, loving your report!!! You have a beautiful family. Hannah packing that suitcase cracked me up~what a doll.

I would love to see a picture of what you've come up with for your autograph book. I'm trying to work all that out right now.

Also, congrats on the outfits!!! WOW! That is amazing!! Since we will be at GKTW together for a couple of days, maybe I'll get to see some of those cute outfits in person!!

Please keep on...your posts are so much fun to read.
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Old 07-01-2008, 09:21 AM   #54
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Great report. Could Hannah come and pack for me? That's the part that I absolutely hate the most about traveling. My daughter and I were talking about luggage for our trip in September and she asked if we would have enough space for everything. I explained that with 10 people going, that meant 10 checked suitcases and 10 carry on bags and that was way too much stuff to have to worry about. I believe consolidation is the keyword and it looks like Hannah has her priorities all set!

I really am enjoying that so many people are sharing their experiences with Wish trips here. What a marvelous way to realize none of us are alone with our trials.

Have a wonderful day...enjoy the 4th of July...God bless America

Denise
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Old 07-01-2008, 10:27 AM   #55
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Amy and Heather at GKTW

Amy and Heather,

This may sound odd, but it may be easier to spend time connecting with each other at a theme park if you coordinate a day at the same place. We basically used GKTW as a place to collapse exhausted and sleep so we could do another park the next day. Exceptions to this were the Pirates and Princesses Party, Christmas at the Village and the time we spent at GKTW the morning we left.

We got to see LeeLee2U's crew at the AK parking lot at the end of the day. We could have planned to see the same show of Lion King. We did get to see Beauty and the Beast together at DHS. That was one of the highlights of our trip.

If you do plan to meet up at the village, schedule it in advance as things get HECTIC and you get so caught up in riding the experience. Be sure to share your cell numbers with each other.

Blessings,

Bill
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Old 07-01-2008, 10:50 AM   #56
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Quote:
Originally Posted by GoofyDoo View Post
Heather, I am love, love, loving your report!!! You have a beautiful family. Hannah packing that suitcase cracked me up~what a doll.

I would love to see a picture of what you've come up with for your autograph book. I'm trying to work all that out right now.
I found some really nice pages that a few people have done.Go to the ceative DISigns section and do a search for autograph books. A lot of people have links to their designs and they don't mind sharing. I have all my pages printed but now am trying to figure out what to do with them. I think I am going to use a glue stick and put them all in a 4X6 notebook. I want to be able to take it apart later to put in my scrapbooks. I am a little dissapointed with how they look but the important thing is the pages will look cute with the signatures.I hate it that I get obsessed over this stuff. I need to learn to "go with the flow" a little more.

Quote:
Originally Posted by bigdisgrandma View Post
Great report. Could Hannah come and pack for me? That's the part that I absolutely hate the most about traveling. My daughter and I were talking about luggage for our trip in September and she asked if we would have enough space for everything. I explained that with 10 people going, that meant 10 checked suitcases and 10 carry on bags and that was way too much stuff to have to worry about. I believe consolidation is the keyword and it looks like Hannah has her priorities all set!
I really am enjoying that so many people are sharing their experiences with Wish trips here. What a marvelous way to realize none of us are alone with our trials.

Have a wonderful day...enjoy the 4th of July...God bless America

Denise
I know what you mean. I am going to try to consolidate as much as I can. I think I might pack a smaller suitcase inside a larger one for the trip down, that way we can check a bag of all the goodies on the way home.I think the hard part will be convincing Hannah that she does not need to bring all of her favorite stuffed friends with her.She has a thing for small stuffed animals and they all need to try her CPAP machine on EVERY night before she will put it on.It drives me crazy because it adds 10 minutes onto bedtime.Whatever works though!!!!


I have to agree.It's nice talking with peole who understand our daily struggles.Having a child with issues really does make you appreciate life a lot more.Hannah makes me take the time to "smell the roses" along the way.



Quote:
Originally Posted by Bill_Lin View Post
Amy and Heather,

This may sound odd, but it may be easier to spend time connecting with each other at a theme park if you coordinate a day at the same place. We basically used GKTW as a place to collapse exhausted and sleep so we could do another park the next day. Exceptions to this were the Pirates and Princesses Party, Christmas at the Village and the time we spent at GKTW the morning we left.

We got to see LeeLee2U's crew at the AK parking lot at the end of the day. We could have planned to see the same show of Lion King. We did get to see Beauty and the Beast together at DHS. That was one of the highlights of our trip.

If you do plan to meet up at the village, schedule it in advance as things get HECTIC and you get so caught up in riding the experience. Be sure to share your cell numbers with each other.

Blessings,

Bill
Good suggestion Bill, We will have to exchange numbers before we go.
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When you wish upon a star- Hannah's Make a Wish trip report: http://www.disboards.com/showthread.php?t=1852434
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Old 07-01-2008, 10:57 AM   #57
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Some of the Big Give items are started to be posted over on the DisBoutique board...everyone can peek but Heather!!!
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Old 07-01-2008, 11:11 AM   #58
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The fun is just beginning! I'll try not to say too much because I'm afraid I'm gonna gush all over everything. I'll just say, just hold on to your hats! I've seen a few things that are on the way, and I know of a few things that are coming...

Everyone (but Heather) take a peek at the Disboutique thread. You'll see what I mean.
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Old 07-01-2008, 11:11 AM   #59
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Quote:
Originally Posted by Tnkrbelle565 View Post
Some of the Big Give items are started to be posted over on the DisBoutique board...everyone can peek but Heather!!!
Oh man, you guys are killing me here! I will be good and not peak though!!!
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Old 07-01-2008, 11:56 AM   #60
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No peeking Heather

No peeking Heather....

What you wrote about the CPAP machine and the stuffed friends was soooooooooooooooooo cute! I can totally relate. Lysi has some of those sorts of behaviors that help her cope.

After scans, she has often conducted clinical treatments on her stuffed animals, including injections, IV and even scans (with her wagon). She dresses up with medical mask and cap and has a BP cuff, Hypos and tagaderm (plus a lot more). This helps her process things. When one of us is ill she becomes the doctor. I have the cutest picture on my phone of her with cap, mask, oversized black glasses and a stethascope when she treated me. I would post it but I can't get the software to work to download the picture from my phone). The other day, I was sick and she was taking my blood pressure. I was not watching too close, until she said, "Is is okay if I pull off your tagaderm." I looked down. She had put a large piece on my very hair arm. First she tried to pull it off against the grain... OWWWWWWWWWCH!

Lysi's Star Baby which was given to her the day she was born (by my awesome Sis Lorna) has been to every surgery, every scan, every E.R. trip and was by her side in the plane on the Wish Trip, along with her Make a Wish Bear; but she slept with her new Mickey (received in our original lot of GKTW gifts) every night.

Some stuffed animals have to go on the trip, but it will be a tough competition amongst them to see who gets to go. Maybe you could host a stuffed animals Olympic Trials, or a lottery or something.

Bill
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