Been a rough couple of days in our house. Yesterday morning Adri woke up at 5am complaining of a headache. That's the one thing I sort of really take notice of, because of her brain tumor. We gave her some water and she went back to sleep. She woke up at 8:30 feeling fine so I sent her to her preschool. At 11 the teacher called saying she'd been crying & complaining of a headache. I had to wake up Cooper and feed him, so by time we left the house it was at least 15 minutes since I'd talked to the teacher. In a hurry, I backed out of my garage before the door was all the way lifted, breaking the door.
Last night Adri was up a lot, feverish, and very cranky. Her first follow-up MRI was scheduled for this morning and we were very concerned that they wouldn't do it if she wasn't well. She wasn't running a fever when we got there, but as always with her, they had a terrible time with an IV. Terrible time. After 5 adults holding her down, and 5 or 6 unsuccessful attempts (and her screaming "get me off of here"), the stress/emotions/fears/memories of her surgery flooded me and I passed out. I guess I did a face plant and busted my head open, so I was wheeled off to the ER while Josh stayed back with her. They wanted to reschedule her but I begged them to go ahead with it. Josh called a friend to come sit with me so I wasn't there by myself through the tests and stitches. I definitely was very emotional - emotional about being back for the first time since the surgery and also having lots of feelings of inadequacy and guilt that I couldn't be there with Adri.
I'm stitched up but look rough and have a nasty headache. Adri seems to be feeling better. We'll get the results of the MRI on Wednesday.
I need a distraction from a crappy couple of days so I think I'll work on some trip planning tonight.
Oh no! You and our family will definitely be in my prayers. I hope that everything comes out "clean" on the MRI.
Just wanted to let everyone know that we're back! We stayed at GKTW and then extended on our own on-site (it was Elke's 4th birthday yesterday, and it was important to us to celebrate it there). We had a great time!
GKTW is a truly magical place. Tip to anyone planning a trip there: do schedule time just to hang out there. It is so relaxing, has a lot for the kids to do (the pool area alone is wonderful), and the people there are truly extraordinary. Pick a handful of things you want to get done at each park, do them, and then spend time at GKTW. That's my advice. Especially if you have a wish child like mine that, ahem, doesn't transition well and doesn't handle sensory overloads wonderfully.... (or so we found out). She still had a good time at the parks, but really really liked just hanging out at GKTW.
Also, I haven't had the time to completely catch up on this thread since we left, but I see people were talking about face painting, so I wanted to tell you about our wonderful experience. Elke wanted to get her face painted at Hollywood Studios, and when I asked the woman how much it would cost, she pointed to Elke's MAW button and said that for her it was free, and absolutely refused to take any money for it. It was these wonderful gestures that made our time in the parks really memorable (oh yes, the magic pass really really helped...).
Just don't get so caught up in having the "magic pass" that you feel like you have to spend all your time in the parks. My two cents.
Hey there! Welcome back! It was so nice to meet you and your family. Elke is adorable and looks so much like you.
I totally agree with you on "scheduling" in time to just hang at GKTW. Literally, all the plans that we had made went right out the window within our first 24 hours of being there. It was torturous getting the girls to leave there to go to the parks and sometimes, we just had to take a step back and realize that it was about them and what they wanted to do and not what we thought they should want to do. I don't regret a minute of it, so great advice!
Just curious if MAW only uses the airlines that are listed as corporate sponsors (Delta, United and US Airways) or if all the airline donate tickets to make a wish? We are still waiting on our dates. We requested to go in November or December because we want to see all the Christmas decorations and also want the weather to be cooler.
Anyone else gone in November or early December? How was your weather?\
Thanks in advance!
We flew Southwest, and I'm pretty sure that our MAW paid for it as opposed to donations (saw the bill). And, I know of another family from the same chapter who flew Delta. So I think it depends on the chapter and the timing - whatever they can do to keep costs down. I hope that you get your dates soon!
Well, we have been back for almost a week now, and I can't even express to you how difficult it has been. Seriously, I will just burst out in tears at the idea that we spent so much time at such an amazing place, yet we can never make a reservation to stay there again.
I just want to get "that" back and I'm afraid we never will. I know some of it is because we were thrust right back into work (got home 11:30 Monday night and was at work at 6:45 Tuesday morning), but it's just...hard. We are already planning our next vacation as I think the week taught us the importance of leaving it all behind regardless of where you go, but still. It won't be there.
If any of you are considering whether to stay at GKTW or on Disney property, please do not sell the Village short or wonder if your child will "fit in" because he or she appears too healthy. I think this is a great misconception for just about everyone before arriving. With the exception of very few children, it can be difficult to determine just who is the wish child and who are the siblings. And even those who do appear to be severely impaired or ill, it is just amazing to see all of the abilities in spite of their disabilities. For example, we were talking to another family whose son is on a vent and has some very significant medical issues. They actually thought that they wouldn't be able to go because he was struggling so much right before the trip. But, once they got down there, they said that his respiratory numbers were better than they had
ever been. And to watch these kids' faces light up because for the first time ever, they can go on a horse drawn carriage or ride a merry go round is just awe inspiring. GKTW is seriously the happiest, most upbeat place I have ever been to and a place where you can truly let go of everything your child and your family have been through. I don't think we talked about any of the "bad" stuff all week. It was all about how much fun everyone was having. So just my .02 worth in case anyone is wondering if there is a place for her child there. I promise you, you won't regret staying there and instead, you will long for the day you can go back to visit.
I remember so well Sydney having to go under for the MRIs. It's just heartwrenching. My thoughts are with you and I hope the headache was just that, a simple headache that all little ones get from time to time. Let us know when the MRI results are back and til then, try not to worry too much.
