Brigitte's PTR...Wish Trip. MAW/AKL April 24th-May 5th

Thank you all for all of the love and prayers you are all showering on Brigge and I. They are so appreciated!!! :hug:

We got a big stack of emails from so many of you today!!! Thank you so much!!! They said that some of them were delayed because of the move from ICU to the OR to the floor!! But we have them and I can't thank you all enough!! They were great. She loved getting mail!!:)

I am not great with the multi-quoting yet..its probably really easy, I just haven't taken the time to figure it out....but I have read all of your messages!!! Thanks again.

Annie, I will definitely ask about the Elavil..Thank you!!
 
Hi Everyone,

Just wanted to let you know that we are home...well, not home, but out of CHB!!! They let us go last night. Working on the feeding at home. To many risky bugs in the hospital!!!
 
Hi guys!!!

We are actually at home now!! We literally pulled in the driveway on Wednesday night, ran in the house, changed Brigitte, packed her a quick bag and left for the mountains. I was determined to enjoy some of the kids school vacation this week.

It is amazing to me, that literally a week ago, we were sitting in ICU. We have since gone swimming, skiing, and made it through a 3 day power outage!!

Seriously!! We had a really bad windstorm hit the area while we were away. We have had major issues with pipes freezing in the past, and Bryan had been so nervous this time. I guess the power went out sometime around 9pm on Thursday. We got home quickly after letting the big kids ski/ride for a bit on Friday morning. Luckily, we were home by about 3pm and got the generator running. The power just came back on about an hour ago. Phew!! We are notorious for losing it for days and days. This was a quick one!! Thankfully.

Brigitte is doing great. Sleeping has been an issue again, but it always is when we come out of the hospital. PTSD sets in like crazy. It will take her a week or so to get adjusted.

I am having so much fun reading up on everyones plans!! Can't believe that 3trips are starting this week!!

Thanks all of you again for all of the love and prayers over the last week! So appreciated!!

PS...we came home with roughly 7 stuffies!! :scared1:
 
How did you guys make out in the storm? We still don't have power, but luckily we have a generator & our cable/phone/internet came back last night! No school today either...

Hope you guys made out OK.
 
I have been asked privately and not so nicely to not continue to post on the subject of GKTW vs. Onsite because certain people are "monitoring" and don't necessarily like what is being said.

So I feel the need to clarify all of which I have been writing for fear that Brigitte's wish will be adversely affected by what I have apparently said and want the people who are "monitoring" to know where I am coming from. For the rest of you, I am so sorry and apologize profusely for this drama that has unfolded because of a simple choice we made...or actually Brigitte WISHED for.

I don't think there is a single person on here that can say I have EVER said a negative thing about GKTW...nor have I ever implied that anyone shouldn't stay there. In fact, I think I have said that we can't wait to go there and enoy the things the village has to offer.

I am very careful about what I say on this board. I always read and reread what I write before posting it. I have, on a number of times, completely deleted something for fear that it may be interpreted the wrong way....and things can and often are very misconstrued in the setting of an email.

All I have been trying to say is that there are different reasons why it is better for some to stay onsite and some to stay at GKTW. I don't think that any one of my posts said "do not stay at GKTW, do everything you can to stay onsite." Actually, I have been the one on the defensive having to say why it is better for our family because everyone has told us we shouldn't. I don't think there is any fear of people not wanting to stay at GKTW...in fact, I believe the issue comes up about them being full, quite a bit. I was told that it is full for the week we are going to be there....I heard this from our chapter...so don't really get where that is coming from. I also don't think that I have influenced anyone to choose offsite. I think as of right now...our family is the only one that is....everyone else has weighed the pro's and con's and chooses GKTW!!!!

We were given the option by our MAW chapter. It wasn't something that we just pulled from the sky. In fact, another NH wish family stayed onsite last year...they were given accomodations at CBR. We chose to stay onsite for a few reasons. We had no idea that by choosing this we would also be able to utilize GKTW. We didn't pick where we would stay. I was expecting to stay at an All-Star resort and have two rooms, only because of the size of our family. In fact, when we travel, we squeeze into one hotel room to save money. Space is never an issue as wherever we are, we don't spend much time in the room. So, when we were told what our accomodations were going to be, it was a complete surprise. I also was under the impression that we would be on the dining plan (which is much more economical than paying OOP) and would have 3 day PH passes to WDW....never knew that US/IOA/SW was included in the mix. I also didn't know that we would have a rental car. In fact, we were fully anticipating using ME and the Disney Transportation until our wishgranters actually talked us into the rental car and going to the other parks. I also didn't know that there was an expense check included in Brigitte's wish.

It has also been said that we should HAVE to stay at GKTW because we might have the opportunity to go back to Disney at some point. Maybe we will, maybe we won't. I don't think anyone should assume that because we have been before that we will be able to go again. We were in a very different place 2yrs. ago. My husband worked a TON of overtime and I also worked a little more than PT. I have since lost my job due to being in the hospital with Brigitte every single month. My husband can't work OT because he needs to stay home with our other 3 kids. When we get home from this trip, it is very likely that we will be looking for another place to live due to the financial burdens associated with having a sick child. I am sure many of you are all to familiar with this. So to say that we SHOULD stay at GKTW because we can go back.....BS. I won't even get into the fact that we are all going on wish trips because we have children with life threatening illnesses....so even if we can go back, who is to say it won't be with one less member of our family.

Just to address the cost issue...as we have seen on so many different PTR's and TR's....its different for each chapter. Some of you get a send off party, we don't. Some of you get a meal covered by your chapter, we don't. Some of you get to go to BBB or Pirates League, we don't. Some of you are having an extra family member or a healthcare professional covered by your chapter because you need the help, we aren't.....even though we were asked and asked since we have 2 other members of our party that have medical issues as well. So to say that I am in someway jeopardizing MAW and GKTW from a financial standpoint is pure nonsense.

It was never my intention to cause such a stir. I was just answering a simple question to which I had an opinion and some experience on......to help. Much like all of you have done for me. Which is why I thought we were all here in the first place. Never in a million years did I ever imagine that what is ultimately Brigitte's Wish, would turn into such a big deal.
 
I'm sorry you've been burdened with this drama & now had the need to explain yourself. I appreciate you sharing your & Brigitte's story with all of us. :hug:

Sometime certain issues come up in my PTR & TRs, such as discussing using the GAC to access a ride via the fastpass line, and I'm always reluctant to tell the whole story out of fear that someone will object to what I am saying. Luckily I haven't faced any scrutiny yet, but in a small way, I understand where you are coming from when you feel the need to "edit" yourself. Again, sorry you are dealing with all of this...
 
I'm sorry any drama came out of this Shannon. I completely understand what you are saying. I also completely respect your decision to stay on-site. Like I said, if we had been given a choice I would have had a hard time making it. I don't think anyone was trying to make you feel bad, or anyone else for that matter, but I also don't know what was said privately. And you're right, what is typed is so easy to misread the true message of what someone means. I hope that after today the dust will settle and we all move on with smiles on our faces. ;)
 
How did you guys make out in the storm? We still don't have power, but luckily we have a generator & our cable/phone/internet came back last night! No school today either...

Hope you guys made out OK.

Hey Amy!!!

Thanks for the kind words!! I am so sick of constantly having to have my "filter" on.....nobody else does!!! LOL!!!

We were without power from Friday until late Saturday. During the big Ice Storm a while we back, we got a generator, so we are pretty good to go now!! We can run the heat, well, and our refrigerator...also our master bedroom so we can use Brigge's pumps and stuff!!

How is it looking for you guys?? I'm sorry the kids were home again today...that was the ray of sunshine in my day!!!! Sean had his PJ's on inside out and backwards, the spoon under his pillow and threw the ice cube out the front door!! He thought for sure it would be cancelled!! No luck though!!! Thank goodness!!! :rotfl:
 
We're doing fine... we lost power for 7 days in the ice storm so 4 days is nothing... The generator is a life saver! We bought it a couple years before the ice storm and never used it until the storm. Now we've used it several times. We also got away overnight Saturday, which helped break things up. We went up to North Conway and stayed at the Red Jacket Inn and played at their waterpark. It was fun. The return of cable yesterday was my ray of sunshine! We are at the end of day 4 without power... let's just hope school opens tomorrow.
 
I got it..................and I gotcha.................and I'm sorry too (but you know that already).

Hey but now that you're on-site it will be easier for you to meet up with us for a dri.........uh er..............snack, right? Now there's a perk for ya :rotfl:

:)
 
I got it..................and I gotcha.................and I'm sorry too (but you know that already).

Hey but now that you're on-site it will be easier for you to meet up with us for a dri.........uh er..............snack, right? Now there's a perk for ya :rotfl:

:)

I am holding you to that!!!! A Lapu Lapu at The Poly?? The kids can play on the beach!!! :rotfl:
 
Shannon, I was tearing up reading your post and Im so sorry you were made to feel like you have watch what you say. I for one completley respect and understand your decision and hope you continue to voice your opinion for other families. :hug: :goodvibes
 

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