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Old 01-04-2009, 10:53 AM   #61
tinytreasures
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Originally Posted by keetmommy View Post
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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Old 01-04-2009, 08:56 PM   #62
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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
Thank you!! You are close!!! That is what the doctors are leaning toward. Atypical migraine. Which would explain some of the other symptoms he has, too. Nausea, headaches, etc.

But they have to rule out seizures, first.

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Originally Posted by LindaBabe View Post
Oh Dear! Prayers for William. And for Noah, and all in need.
I know it! Noah is in far worse shape than sweet William. Pray for them all...but I don't want to take ANY attention away from Noah...he is fighting so hard!!!! And has an awesome family holding his torch.

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prayers for William
'

Thank you!!

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Originally Posted by keetmommy View Post
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
Thank you so much!!! and WELCOME!!!!!

I am sorry to hear about your DD6's troubles. Gosh...it would be so cool to be able to "feel" Disney on a cruise...Has she ever been on a big ship like that? That would be cool.

If you do decide to do something Disney (or not!) hang with us...you can post a pre-trip report (if it is Disney related) as we would love to hear about your plans, etc!!!
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Old 01-04-2009, 09:24 PM   #63
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Maroo- I am glad they are being thorough with William and not just thinking, " Oh, probably migraines" and not ruling out seizures. When is his EEG? Is he still in the hospital, or is he home? I love seeing you write " Sweet William"- that is what we have called my William since he was a baby ( not in public anymore, though-lol!) Since he was a baby, I would say, " Who is my sweet William?" and he would say "ME" and then I would tickle him. Of course, now he is more of an ornery William and says, " Not me" and then half heartedly tries to run away.

That Noah sure is a fighter, isn't he? I would love for this family to get to take their wish trip. They all certainly deserve it!

Amie, a Disney cruise is pure magic! We took one summer of '07 ( not a wish trip) and are saving our money for one next New Year's Eve. That was Nathan's first choice of a wish trip but our chapter would only approve a 3 night cruise, so he went for WDW.

After our first cruise, I asked our boys if they would rather do a non-Disney cruise- especially if it meant we could do one sooner. They said, " NO! It has to be Disney!" And that is teenage boys!

Carol
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Old 01-04-2009, 10:07 PM   #64
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Ack!! Didn't realie rthe thread moved! Our PTR was updated!!
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Old 01-05-2009, 09:23 AM   #65
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Originally Posted by oklamomof4boys View Post
Maroo- I am glad they are being thorough with William and not just thinking, " Oh, probably migraines" and not ruling out seizures. When is his EEG? Is he still in the hospital, or is he home? I love seeing you write " Sweet William"- that is what we have called my William since he was a baby ( not in public anymore, though-lol!) Since he was a baby, I would say, " Who is my sweet William?" and he would say "ME" and then I would tickle him. Of course, now he is more of an ornery William and says, " Not me" and then half heartedly tries to run away.

That Noah sure is a fighter, isn't he? I would love for this family to get to take their wish trip. They all certainly deserve it!

Amie, a Disney cruise is pure magic! We took one summer of '07 ( not a wish trip) and are saving our money for one next New Year's Eve. That was Nathan's first choice of a wish trip but our chapter would only approve a 3 night cruise, so he went for WDW.

After our first cruise, I asked our boys if they would rather do a non-Disney cruise- especially if it meant we could do one sooner. They said, " NO! It has to be Disney!" And that is teenage boys!

Carol
Yes, we are so glad they are being thorough! His EEG is today. He is also going to have an MRI, too...just to make sure they are not missing anything "small"...

Yeah...William won't let me call him "sweet William" or "William bug" or "little man" anymore, either! Not even at his house! But he doesn't generally read this thread! lol

Noah IS such a fighter! It helps so, so much that his Mom is also a fighter, refusing to give up on his behalf, too! An inspiration to me!

Quote:
Originally Posted by iu97alum View Post
Ack!! Didn't realie rthe thread moved! Our PTR was updated!!

Aw man! I am so sorry!! I have been hoping we got the word out!!!! I will check that thread again to see if anyone has posted to it!

I did see your updates!
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Old 01-05-2009, 09:32 AM   #66
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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.
Linda - I have to say you're an angel on this board. You give GREAT advice on planning and well, you're HERE for us! I for one can't thank you enough!!!
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Old 01-05-2009, 09:39 AM   #67
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Thanks for the welcome all...I called this morning and got her signed up now they need to get a form from her oncologist and then we move forward..we live in Wisconsin and have had 50 inches of snow this winter already and got 1/4 inch of ice on Saturday...so I could use planning a trip somewhere warm right now..it is hard to talk to her about it with out swaying her in anyway...
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Old 01-05-2009, 09:43 AM   #68
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Quote:
Originally Posted by keetmommy View Post
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
Hi Amie!!! Welcome!! There are a couple of us that are doing the Disney cruise. We leave in 13 days!!! Looking forward to hearing your daughter's story.
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Old 01-05-2009, 07:24 PM   #69
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I posted our last two days to our TR.

I still need to add in the pictures we purchased and then the Photopass pictures when we get that.

Now that I got that finished up I can catch up on this thread
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Old 01-05-2009, 07:38 PM   #70
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Thanks for the welcome all...I called this morning and got her signed up now they need to get a form from her oncologist and then we move forward..we live in Wisconsin and have had 50 inches of snow this winter already and got 1/4 inch of ice on Saturday...so I could use planning a trip somewhere warm right now..it is hard to talk to her about it with out swaying her in anyway...
Welcome!!!!

Yeah...we had trouble not swaying Lauren either. Thankfully she really wanted to go to Disney...having never been there!

I can not even imagine 50 inches of snowfall!!! That is like...feet...? Good grief!!! Can you still see your car?

I can't wait to find out what she wishes for!! Please keep us posted!
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Old 01-05-2009, 07:40 PM   #71
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Originally Posted by LuvGoing2Disney7 View Post
I posted our last two days to our TR.

I still need to add in the pictures we purchased and then the Photopass pictures when we get that.

Now that I got that finished up I can catch up on this thread
Y'all (or You guys - depending on where you are from)....

...this is an AWESOME TR!! Great pics...good storytelling! And the ending...

Oh...the ending!!

Wow...
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Old 01-05-2009, 10:58 PM   #72
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Welcome Amie-my dd wanted to go on a Disney cruise but our chapter wasn't able to do them. So my dd chose a caribbean cruise and we could pick Royal Caribbean or Celebrity. We should get all the details sometime this week, we can't wait.
Good luck with your planning. It is hard to talk to them without swaying them. I just gave my dd some ideas because she came up with some pretty random things on her own and it seemed like things that wouldn't be as special for her when it came down to it. So I gave her a few ideas but never told her what she had to do, she picked the cruise on her own. It had been something she had wanted to do. DH and I have cruised without them because taking a family of 5 can get a little spendy.

Maroo-I hope eveything goes well with William
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Old 01-06-2009, 06:30 AM   #73
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Linda - I have to say you're an angel on this board. You give GREAT advice on planning and well, you're HERE for us! I for one can't thank you enough!!!
What a SWEET thing to say! Thank YOU!

I have to say, I hang out here totally selfishly! My only child married a woman 6 months older than I am, so I have only granddogs. You wonderful women let me "grandmother" real children! (you know - grandmother? That bossy opinionated know it all old woman with pockets full of treats for the kids?)

Currently in Florida, staying about a mile down the road from GKTW. It's sunny and warm. I went over to a couple resorts last night and it was very very quiet - so I hope that bodes well for low crowds in the parks for those of you coming soon.

Tonight, the weather is supposed to change for the worse for a few days, but that only means occasional showers and highs in the upper 60's and low 70's instead of 80's.

Any questions I can research? Might go to Seaworld, later today.

Happy Day!
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Old 01-06-2009, 08:32 AM   #74
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We have our dates....March 28th thru April 3rd....

It was only a week ago yesterday that our wish granters came to ask Jake about a wish...that was fast...
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Old 01-06-2009, 08:58 AM   #75
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That is great, Christine! I am so happy for you.
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