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Old 12-30-2008, 08:33 PM   #46
mom2lilnick
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I had the most brilliant idea to share with everyone who is going soon. I was at Target yesterday and they still had some advent calendars left. Nick and Noah this year didn't have chocolate calendars since I splurged and bought them Lego advent ones.

So... we are counting backwards to our MAW dates.. sort of like Christmas all over again! I thought it was a pretty cute way to count down the days.
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Old 12-30-2008, 10:39 PM   #47
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Originally Posted by mom2lilnick View Post
I had the most brilliant idea to share with everyone who is going soon. I was at Target yesterday and they still had some advent calendars left. Nick and Noah this year didn't have chocolate calendars since I splurged and bought them Lego advent ones.

So... we are counting backwards to our MAW dates.. sort of like Christmas all over again! I thought it was a pretty cute way to count down the days.
What a great idea! How much fun. I wish we were counting down again...looking back, it was one of the best parts of our trip...the anticipation. So enjoy it!! It is all part of the FUN!!!


AND>>>> We have good news from Nicole (Noah's mom)...they did surgery today and they have a new line. The scar tissue was not as bad as they orginally though. Noah made it through surgery fine and is doing better tonight!

for more info: check out their blog...http://noahgrantjohn.blogspot.com/
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Old 12-31-2008, 05:28 AM   #48
LindaBabe


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If you would like postcards sent to your wish kids and their sibs during January, please PM me their names, ages and snail mail addy's as well as anything else that might be helpful to personalize the card - (like when they are going or when they went, etc.) I leave January 5th.
Prayers for Noah - the last blog post seemed a wee tad positive, thank goodness. Prayers also for Amber and her family during this difficult week.

I am continually blown away by how strong and courageous you all are - the titans of industry and the moguls on wall street that dominate the news could learn a myriad of important life lessons from you.

The quote above is from me - I thought if it was highlighted, more families might see it.

Anyone at GKTW 1/11 or 1/12, 1/17 or 1/18? Those are the days I'll be working there and love to meet you and your kids.
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Old 12-31-2008, 09:22 AM   #49
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Anyone at GKTW 1/11 or 1/12, 1/17 or 1/18? Those are the days I'll be working there and love to meet you and your kids.
Oh.. that is such a BUMMER. we will be arriving 1/19! I would have loved to meet you!
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Nick's pre-trip report - http://www.disboards.com/showthread....8#post28150528
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Old 12-31-2008, 09:25 AM   #50
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Okay.. airline question.. Nick uses a booster seat, just a cheap, plain ol' booster seat that we bought at menards. Technically (legally) he is old enough to go without here in Nebraska but he doesn't know that so he still uses it. I talked to MAW and they said that if we want him to use it in the Limo and in the rental car, we need to bring it with us... will he also then use it on the plane? or can we check it? Do they have requirements for that? This does seem like a huge hassle. It is a high back booster, should we just forget about it? I don't even know what the laws are in FL for kids and boosters.
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Nick's pre-trip report - http://www.disboards.com/showthread....8#post28150528
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Old 12-31-2008, 10:25 AM   #51
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check with your airline...you should be able to pull something up on that from google? I think we ended up on the TSA website for Lauren (but her situation is totally different). We ended up using her carseat on the way to the airport and back (no limo, though), but did not use it on the plane. It was easier to "strap" her to the airplane seat with a large velcro strap. It would be easier to get off in an emergency. (Which I thought was totally stupid, until last week when that plane caught on fire on the ground and they all had to get out. THAT would have been interesting with our crew.) Flying is the safest form of transportation known to man.

I do think that the booster seats are a no-no. I think you have a 5 point harness to use on the plane. But, you can check it. Don't know if it counts as luggage. But I do think you can "gate check it" so that it comes off first and is handed directly to you at the gate. I would do that rather than send it through security, if you are able.
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Old 01-01-2009, 09:29 PM   #52
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Quote:
Originally Posted by mom2lilnick View Post
I had the most brilliant idea to share with everyone who is going soon. I was at Target yesterday and they still had some advent calendars left.

So... we are counting backwards to our MAW dates.. sort of like Christmas all over again! I thought it was a pretty cute way to count down the days.
What a cute idea. I bet the kids are loving that!

Quote:
Originally Posted by LindaBabe View Post
Prayers for Noah - the last blog post seemed a wee tad positive, thank goodness. Prayers also for Amber and her family during this difficult week.

Anyone at GKTW 1/11 or 1/12, 1/17 or 1/18? Those are the days I'll be working there and love to meet you and your kids.
I've been praying for their families too!

I wish we were going to be at GKTW on those dates. I want to go back so bad.

Quote:
Originally Posted by mom2lilnick View Post
Okay.. airline question.. Nick uses a booster seat, just a cheap, plain ol' booster seat that we bought at menards.

I talked to MAW and they said that if we want him to use it in the Limo and in the rental car, we need to bring it with us... will he also then use it on the plane? or can we check it? Do they have requirements for that? This does seem like a huge hassle. It is a high back booster, should we just forget about it? I don't even know what the laws are in FL for kids and boosters.
We took Ryan & Madilynn's seats. They used them to and from the airport and in our rental van in FL. On the way to FL we checked the seats with our luggage. On the way home we did not check them and they sat in the overhead bin. In order for a booster to be used on an airplane it has to buckle to the seat and the child buckle to it seperately. You can not use the airplane buckle for the seat and child.
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Old 01-03-2009, 07:22 AM   #53
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Have you already tried this one?

http://www.dreamfoundation.org/

I don't know anything about them. They were on the disABILITIES page (buried in a thread). I would be curious to know if they could help.

I know it is harder to raise money for adult wishes...so a lot of those foundations do less for the wish and have a harder time granting them all.

This one does mention "life limiting"...so maybe it is not a terminal only foundation?

And I thought MS was terminal? Eventually? I am not educated on that one!

I hope it works out for you guys!!! And please keep us posted!!

I checked out the web page and it's the same as others. You have to be terminally ill with only a few months to one year to live. Thanks for the information though
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Old 01-03-2009, 08:51 AM   #54
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I wish there was a place that would help adults wishes come true as well. My best friends has MS & in a wheelchair. She is raising her 15 year old daughter, she works a full time job, she is also putting her daughter through a Christain school (by the grace of GOD)! She is a wonderful hard working, caring, loving freind who is always there for me.

Anyway DH & I are going on a family trip to WDW/DCL and this is my friends dream so we invited & she put down her deposit for her and her daughter. So now its only 10 months away and its hard for her to finish paying off the trip plus getting passports. She is determined to do this.

I have tried differnt place to see about getting a wish for her and guess what everyone has told me. Because she is not terminal they can not do anything. That makes me so made. She may not be terminal, but darn she can not eat with a metal fork, spoon. She can not cut her own food. She can not pick up a cup. . I just pray that someday soon I will come across a wish foundation that would help my best friend out. She is an amazing woman and she does not let her handicap stop her.
I have an internet friend who has a similar disease as my son's ( so do her 2 children). It is a heart disease and is considered life threatening-not necessarily terminal. She told me they just took a trip to WDW through Memories of Love- it was her wish, not her kids ( they chose a tv and computer through MAW). It is an organization for families with a critically ill parent. She had the same tickets we did- 3 days WDW, 2 days US/IOA and Sea World. They were gone 7 nights and got to stay in a fancy hotel.
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Nathan's magical wish trip- Pre trip report [/U]
http://www.disboards.com/showthread.php?t=1866940

4 night Wonder Cruise- July '07
Nathan's MAW trip to WDW- Nov '08
7 night NYE Magic Cruise- Dec '09
4night/5night back to back Dream Cruise followed by 6days at WDW-June '11
Disneyland- over 12 times and counting
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Old 01-03-2009, 12:32 PM   #55
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Hey guys...

I have a prayer request. William has been having some blackouts? Where his eyes go black for a few seconds at a time. This coupled with the headaches and nausea he has had for months has everyone worried. He went to the doctor today and they are admitting him right now to the hospital.

Please pray for William...and for his family!

Thank you guys so much!!!!!!!
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Old 01-03-2009, 06:10 PM   #56
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Hey guys...

I have a prayer request. William has been having some blackouts? Where his eyes go black for a few seconds at a time. This coupled with the headaches and nausea he has had for months has everyone worried. He went to the doctor today and they are admitting him right now to the hospital.

Please pray for William...and for his family!

Thank you guys so much!!!!!!!
We certainly will keep William in our prayers! Could those be the symptoms of migraines? I don't really know because I don't have any experience with migraines. Let us know what they find out!

Carol
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Nathan's magical wish trip- Pre trip report [/U]
http://www.disboards.com/showthread.php?t=1866940

4 night Wonder Cruise- July '07
Nathan's MAW trip to WDW- Nov '08
7 night NYE Magic Cruise- Dec '09
4night/5night back to back Dream Cruise followed by 6days at WDW-June '11
Disneyland- over 12 times and counting
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Old 01-03-2009, 06:14 PM   #57
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Oh Dear! Prayers for William. And for Noah, and all in need.
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Old 01-03-2009, 06:48 PM   #58
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prayers for William
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Old 01-03-2009, 07:17 PM   #59
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Update on William...

They have ruled out some "bad" stuff...he does NOT have a tumor, brain bleed, or any visual (eye) disorder that they can see. They are going to keep him in the hospital tonight and may do the EEG (to check for seizure activity) either tomorrow or Monday.

They moved pretty fast...which was good but also made us a little nervous today.

Thank you all for your prayers! It was quite something to walk back in this same Children's Hospital that Lauren spent so much time in this time last year. We were not excited to be back here. But hopefully he will get out of here tomorrow and they can figure something out. They are thinking migraines or seizures at this point.

William's parents are both staying here tonight (at the hospital) and I will be with Lauren through tomorrow. We will get to go to church and go out to eat! Go us! And then...it is possible that William will be home tomorrow night, maybe. Hopefully.

I will keep you guys posted...thanks for your prayers!!

And definitely prayers for Noah...we are not anywhere NEAR that need...ya know what I am saying!?!
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Old 01-04-2009, 09:33 AM   #60
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I will say a prayer for William...

I am joining in we are just starting the Make A Wish process for my DD, she is 6 has a genetic disorder called NF1, it has caused her to have multiple brain tumors, hydrocephalus, which has left her legally blind, she is a year into her chemo and has about 4 months left..so we feel this is the time...so tomorrow I make the call to get her signed up...she has several ideas...and most of them are things we have done already...she really likes routine...we shall see where this leads us...Her friend who has similar issues went on a Disney Cruise last summer....

Amie
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