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Old 08-31-2009, 01:32 PM   #1
CrystalSnow
Earning My Ears
 
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Melia's Make A Wish Trip -- Bring on the Pooh

When the Make A Wish volunteers came (about six months ago), Melia wished to go to Disneyworld...kind of. They actually asked her what she wanted, and she said she wanted to see Pooh. So they tried to prompt her a little and asked where Pooh lives. She looked at them and said, "At Owl's house." So they tried again and asked where Owl's house is. She looked at them like they were dumb and said, "In a tree." Basically, it was like herding cats (she was only 2 1/2), but it was finally decided and the trip was planned for October since we had a new baby coming in April and we wanted her to be a bit older before dragging her across the country. Oh, they also asked her what her favorite color was...she said black. Only my daughter.

Melia was born with a very rare metabolic disorder called Ornithine Transcarbamylase Deficiency. It's a mouthful. And it's an awful disease. Basically, her liver was missing a key enzyme needed to break down protein. Without it the byproducts turn into ammonia, which floods the body and brain and causes lethargy, stupor, seizures, brain damage, and finally coma and death. We were extremely fortunate that we were still in the hospital after her birth when things started downhill. On her third day she was flight-for-lifed to the Children's Hospital where we were very fortunate to have skilled metabolic doctors who started the appropriate treatments quickly. We were able to bring her home after about three weeks. She had special formulas and medications that they hoped would be enough to control it. For some kids (with milder forms of the disease) it can be enough, but it wasn't for Melia. We started out with blood draws every other day to check her ammonia levels, feedings using gram scales and on exact schedules, charts of everything, weight checks, alarms, liver biopsy and endless doctor's appointments, finally getting a mediport, keeping her away from illness, and essentially staring and staring at her, in the hopes that we would see the signs of an episode before it was too late--but it wasn't enough. Her body couldn't do it and she ended up hospitalized several times in her first few months.

That's when we had to come to terms that she would need a liver transplant. We ended up moving temporarily out to the Ronald McDonald House in California while she waited on the list. After three months she received a new liver, and after five months there we were able to come home. Obviously, the story goes on...but this is probably a long enough introduction.

It has been great to read through the boards, get so much info, and follow so many touching stories. Hugs to all of you and your little ones.
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-Crystal

Mom to Melia (3) and Juniper (6 months)


Melia's PTR -- Bring on the Pooh

“To hope till hope creates from its own wreck the thing it contemplates” -Percy Shelley

“We must let go of the life we have planned, so as to accept the one that is waiting for us.” -Joseph Campbell
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Old 08-31-2009, 01:39 PM   #2
CrystalSnow
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So....we are really just starting to plan. By "we" I mean "I" because I don't really see my husband helping much! Going on the trip will be:

Josh: Daddy extraordinaire
Crystal: That's me
Melia: Our little bundle of energy
Juniper: Just 4 months old, coming along for the ride

Also, my mom, step-dad, and brother will be coming for a few days of the trip.

We are going October 11-17 and I'm hoping for unseasonably cool weather. Oh, how I hate the heat.

I think Melia is finally starting to get the whole concept because she broke out the whining last night, "But I want to go on my trip now!" We are getting excited...
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Mom to Melia (3) and Juniper (6 months)


Melia's PTR -- Bring on the Pooh

“To hope till hope creates from its own wreck the thing it contemplates” -Percy Shelley

“We must let go of the life we have planned, so as to accept the one that is waiting for us.” -Joseph Campbell
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Old 08-31-2009, 01:45 PM   #3
CrystalSnow
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Okay, I'm not sure if I'm allowed to post pictures yet. Oh, and I don't know how, so until I figure it out, trust me she's cute!

Our tentative plan:

Sunday: (evening arrival) hang out at GKTW and do the Candyland Party
Monday: Magic Kingdom
Tuesday: Animal Kingdom (prob a half day and then back to GKTW for swimming)
Wednesday: Universal Studios
Thursday: Sea World (prob half day then back to GKTW for Winter party)
Friday: Magic Kingdom again
Saturday: GKTW Horseback riding and lunch and leave for airport

I would love any input or suggestions anyone wants to throw my way. We are pretty flexible--just trying not to pack too much in since we'll have a baby with us too.

Also, if anyone wants to leave any comments on favorite activities/rides that your little ones enjoyed (age 3-5) I would love that info.

Okay, the baby is done with her 20 minute nap so that's it for now...
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Mom to Melia (3) and Juniper (6 months)


Melia's PTR -- Bring on the Pooh

“To hope till hope creates from its own wreck the thing it contemplates” -Percy Shelley

“We must let go of the life we have planned, so as to accept the one that is waiting for us.” -Joseph Campbell
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Old 08-31-2009, 10:18 PM   #4
MomTo4+more
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I found it! I saw in the wish-trippers thread that you had strated a PTR. I will be following along. I am so glad you are getting this trip. You all have been through so much! I understand those twenty minute naps. I'll be waiting for another naptime when you can post more of your plans!
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Follow Deyki's Wish Trip here:
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Old 08-31-2009, 10:35 PM   #5
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looking forward to tagging along on this report!
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Old 09-01-2009, 03:04 PM   #6
maroo
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I found it!!

I will be linking this in the Wish Trippers thread, so hopefully you will get some more comments over here!

You are going to have a great trip!
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Old 09-01-2009, 04:44 PM   #7
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It is so much fun bringing a baby to wdw as they are not usually afraid of anything!! We went last year for the first time. My younger grandson loved all of the characters!! My older grandson had just turned 3 and his favorites were: Peter Pan, Winnie the Pooh, Barnstormer, teacups, dumbo, Pirates of the Car., Haunted Man., the train and Buzz Lightyear. At AK he loved the safari and triceratops spin as well as the nature trails. Looking forward to reading more!!
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Old 09-01-2009, 08:32 PM   #8
CrystalSnow
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Thanks for the comments. And thanks SunnieRN for the ride advice. I feel kind of lost like I don't know where to begin. I did see the chart with height restrictions so that helps a little too. Melia is almost 39 inches right now....so I'm hoping she has a big growth spurt and we could try to finagle a way on to the 40 inch rides. Of course, I don't know how much action she'll be up for anyway. She's never really ridden anything so it will be interesting to see what she likes and doesn't like.

I asked her again who she wanted to meet and she named all of the Pooh characters. So I'm trying to figure out whether we need to do the Pooh lunch, or whether there are plenty of other opportunities to meet them. If there are other ways then I would opt for skipping the lunch since we really don't have any money to spare. Any advice on meeting these characters??

Okay, I'm off to try and figure out how to post pictures...
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-Crystal

Mom to Melia (3) and Juniper (6 months)


Melia's PTR -- Bring on the Pooh

“To hope till hope creates from its own wreck the thing it contemplates” -Percy Shelley

“We must let go of the life we have planned, so as to accept the one that is waiting for us.” -Joseph Campbell
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Old 09-01-2009, 10:03 PM   #9
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There is a posting pictures tutorial on the wish trippers thread - 2nd post - if you are needing any instructions or anything. That can be tricky the first few times you do it!

Can't wait to see pics!!
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Old 09-02-2009, 12:26 PM   #10
CrystalSnow
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Thanks, Maroo. I've never used Photobucket before so I'm trying to get some pics on there. Unfortunately, between my technological ineptitude and another bout of kidney stones, it is slow going. Hopefully I will have a few pictures up later today...
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Mom to Melia (3) and Juniper (6 months)


Melia's PTR -- Bring on the Pooh

“To hope till hope creates from its own wreck the thing it contemplates” -Percy Shelley

“We must let go of the life we have planned, so as to accept the one that is waiting for us.” -Joseph Campbell
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Old 09-04-2009, 12:38 PM   #11
CrystalSnow
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Okay, here goes nothing....hopefully it works. I tried to stay away from any that are too graphic. So the first two pics are from when she was in the NICU at Children's, but was improving and had a lot of lines already removed. The third picture is from right after transplant (edited: oops. I guess this one is kind of big and close up). And the last is from a couple of weeks ago--I love that picture!








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-Crystal

Mom to Melia (3) and Juniper (6 months)


Melia's PTR -- Bring on the Pooh

“To hope till hope creates from its own wreck the thing it contemplates” -Percy Shelley

“We must let go of the life we have planned, so as to accept the one that is waiting for us.” -Joseph Campbell
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Old 09-04-2009, 01:13 PM   #12
CrystalSnow
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And here are two pictures that sum up Melia's personality perfectly:

SILLY (Okay, it applies to me as well)



ATTITUDE (Okay, that applies to me also, but I'm not posting the photographic evidence )

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-Crystal

Mom to Melia (3) and Juniper (6 months)


Melia's PTR -- Bring on the Pooh

“To hope till hope creates from its own wreck the thing it contemplates” -Percy Shelley

“We must let go of the life we have planned, so as to accept the one that is waiting for us.” -Joseph Campbell
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Old 09-04-2009, 01:25 PM   #13
CrystalSnow
Earning My Ears
 
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Sorry...I keep editing the above picture and replacing it with a smaller version, but it keeps showing up huge.

Another question: does anyone know which characters come to GKTW, or does it vary? I'm trying to figure out if this is somethng we should stick around for in the morning. (Melia likes the Pooh characters, Dora and Diego, Elmo, and maybe Barney and Tinkerbell)
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-Crystal

Mom to Melia (3) and Juniper (6 months)


Melia's PTR -- Bring on the Pooh

“To hope till hope creates from its own wreck the thing it contemplates” -Percy Shelley

“We must let go of the life we have planned, so as to accept the one that is waiting for us.” -Joseph Campbell
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Old 09-04-2009, 04:06 PM   #14
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How exciting you are getting to take your darling little angels to WDW! What beautiful little girls you have and you all deserve this trip so much - can't wait to read all about it!
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Old 09-04-2009, 09:03 PM   #15
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Oh my gosh, the girls are SO cute!! Lets see, Pooh, Darby and Tigger are often out across from the Pooh ride in Fantasyland. Also they are often at the character spot in AK which is on the right side of the park. I think they are in the Epcot World Showcase area in England also!!

I am very sure others will correct me if my information is not up to date!!

Looking forward to more!
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