Discussion in 'Community Board' started by maroo, Dec 25, 2008.
Welcome to our group
I look forward to hearing about your adventure
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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.
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.
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!!!
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!
Ack!! Didn't realie rthe thread moved! Our PTR was updated!!
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!
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!
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!!!
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...
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.
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
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!
Y'all (or You guys - depending on where you are from)....
...this is an AWESOME TR!! Great pics...good storytelling! And the ending...
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
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.
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...
That is great, Christine! I am so happy for you.
Did you find out if they are still doing the parents night out? I think my kids are old enough and it would be fun to have a parents night in with some takeout. Any good chinese places around to get take out?
I am really curious how medical care works.. of course we are getting close and Nick is having some issues asthma wise now. Nick's immuno mentioned that there isn't an immunologist in Orlando but there is one in St Petersburg.
What happens if Nick gets sick or needs to see a dr?
Yeah!! Dates! I will update the link to your pre-TR in the first post on this thread...with your dates! Are you staying at GKTW??
Well, we have some experience with this one! yikes.
If it is during the day, on a weekday, they have a doctor that will see any Wish child at his office for FREE! I assume he is a family physician or internal medicine? Not sure if he is a specialist. But evidently GKTW uses him a lot, so I am sure he knows folks he could call to consult, if needed.
When Lauren got sick, it was at night, so we took her to Celebration Hospital, which is down 192 from GKTW, I think. Probably a 15 min drive?? They can give you directions from GKTW. There are other hospitals to choose from, as well.
They took GREAT care of Lauren. They are used to dealing with out of state insurance companies, as well, so that should help anyone that needs it. Not sure about Canadian Wish Kids, though! (They will treat them, of course...but I doubt they can bill a Canadian insurance? Is there even a Canadian insurance? Or is it government? I digress!!)
But...that is all I know about Medical. You can also pre-arrange treatments, if needed. Dialysis, infusions, etc, can be pre-planned and given at a medical facility, too. But you will need to talk to GKTW about that in advance, if possible.
I finally did a little update with PICTURES from our Big Give package
The kids were so excited as I think you will see by the looks on their faces. I am attempting to post a link for you:
I will worry about making it look like a nicer link next time.
Thanks again everyone!!!
With everything happening to everyone else I feel silly posting, but I just had to give Aidan some extra O's tonight for the first time in quite a few months. He is fighting a nasty head cold and without his Trach anymore we are having difficulty getting the mucus out. He is clogged and miserable, but finally sleeping. The problem is that he can't get much air through the plugged nose and doesn't really mouth breath yet. Please add him to your lists, we do not want to end up in a hospital and putting back in a Trach.
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