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Old 06-06-2009, 08:42 PM   #1
wkualum
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Mikaela Makes A Wish -- Oct 10 - 16 2009

Hello! I'm a new poster to the board and thought I'd start a thread to document my daughter's pre trip planning. She will be going on a Make A Wish and how excited are we?

Background:
Mikaela is 8 years old (9 in November). She was born with a brain tumor that was sugically removed when she was just 3 weeks old. Luckily the 'spot' was found on my prenatal ultrasound so we had been watching it the entire 2nd half of my pregnancy. The tumor was benign and she recovered well. When she was about 4 1/2 months old, I got a call from daycare where they told me she had had a seizure. They increased the seizure medicine they put her on after surgery but it didn't help. The seizures continued. She went through what seems like every anti epileptic drug on the market -- some more than once. They would all work for a time but then they would suddenly stop. VERY frustrating. Just after she turned 4, she had a partial hemispherectomy to remove the parts of her brain that were in constant seizure activity. While the surgery didn't do as we had hoped in termed of seizure control, it did change our lives. Because the constant seizure activity was gone, her little personality came shining through. She is starting to walk unassisted and she is just a joy.

She is very developmentally delayed and remains non verbal. While she doesn't understand the whole wish trip concept I think she is going to have a BALL on the trip. She loves Tigger and Pooh and is beginning to like Mickey Mouse Clubhouse.

Sometimes I wonder if she 'deserves' the trip because she isn't so excited to meet Mickey or one of the Princesses. I read some of the other pre trip threads for wish kids and the children are just beside themselves in excitement. But then again, because she is different doesn't mean she doesn't deserve. She's getting to a point in her development where she is so much more aware and I really think she will soak in all the special attention.
I am a single mom so we will be taking one of the nurses at Mikaela's special needs daycare. She also watches Mik so mommy can go have girl time with her friends. She has done so much for us that I think she deserves to go with us!

We just met with our Wish volunteers for the first time last night. I officially told them Mikaela would like to wish to go to Disney. We requested to go in October so it won't be so hot -- neither of us handle the heat well So hopefully we get our official dates soon and we'll be so excited! I have requested to have a character meal with Pooh and to have some special seating at the Playhouse Disney Live show.

Thank you all for reading and I look forward to updating with any other details as we get them. I know that October seems so far away, but I'm sure it'll get here before we know it!!


Last edited by wkualum; 07-28-2009 at 09:49 PM. Reason: edited to add Mik's Pic
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Old 06-06-2009, 09:19 PM   #2
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to the DISboards!

Your daughter is just precious!

I am so glad you guys are getting a wish trip. It sounds like you guys certainly deserve this trip!

Do you guys know where you are staying? Which wish organization is granting the wish?

Welcome!! Can't wait to get to know you guys!
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Old 06-06-2009, 09:57 PM   #3
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We'll be staying at GKTW through Make A Wish. Just waiting on the dates for now. Can't wait for all the planning -- I guess I need to research and go through and see what I think she'll want to do and plan our 'attack'

I'm super excited to be going and talk to Mikaela about it every day -- in hopes that she'll understand more once we get there. Sometimes she surprises me with what she understands

Thanks for the hello!!
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Old 06-06-2009, 11:30 PM   #4
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Hi! How exciting planning a wish trip! It sounds like your little girl has been through a lot. My son has uncontrolled seizures, it is so hard to deal with, I know. Glad you found us. The information here is unbelievable! You are right, October will be here before you know it. We leave for our trip in 16 days! I wish we could have gone in the fall, but I have older kids who can't miss school.
I graduated from U of L. It is nice seeing a fellow Kentuckian on here!
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Old 06-07-2009, 12:59 PM   #5
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Hello and Welcome!!!! We are from Kentucky too!!!! We are waiting for our dates also. We have requested September or October. We thought the heat would be easier those months also but we are having to wait until my son has completed his chemo. As you have already read this is an exciting place to be. Everyone is so nice and makes you feel so welcomed!!!
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Old 06-07-2009, 02:32 PM   #6
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I'm a WKU grad (as you can tell by my screen name) so I knew several folks from Madisonville while I was in college. My first job out of college brought me here to Louisville and I've been here since.

Sounds like we both might be there at the same time!!
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Old 06-07-2009, 04:34 PM   #7
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I hope the seizure monster stays away from Orlando, too! Most of Sam's seizures these days are also during sleep. His EEG shows that he is seizes every night, all night long. Unfortunately, we have some daytime seizures that come out of nowhere, too. They are not as frequent as they used to be, but still way too often!!
I look forward to hearing your plans and sharing our experiences!
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Old 06-07-2009, 11:36 PM   #8
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Welcome to the boards! This is a wonderful place, you'll learn so much from these boards. Your dd is very cute. I hope you get dates soon.
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Old 06-08-2009, 04:50 PM   #9
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First of Welcome! I can't wait to read more of your details. You will get so much information from these wonderful people on here. I couldn't imagine going on our trip w/o having found this board. I think we would have missed out on alot of things and good tips for our children. We leave in just 10 days and this board has helped me so much.
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Old 06-13-2009, 06:39 AM   #10
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Geez. You'd think we were leaving on our trip next week the way I've been consumed by everything Disney. It keeps me awake at night. I dream about it. Now I really really want to go, but girl needs her sleep!

If it's like this now, what's it going to be like once the trip really IS approaching? I don't even have dates yet
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Old 06-19-2009, 02:58 PM   #11
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Patience isn't my virtue and I'm still waiting for dates. I know I know -- it takes a bit to create magic. Just thought in Mikaela's case it would be something like -- oh I don't know -- overnight?

It's only been 2 weeks since our initial meeting with our volunteers so I need to be patient. Just isn't my thing....

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Old 06-19-2009, 06:50 PM   #12
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Sign me up! I'm surprised nobody has said this (shame on you maroo!) but you need to head over to the Wish Trippers Planning Thread over on the Community Board. There are many many families who are planning or have already gone on wishes as well as people connected to MAW, GKTW, and Disney. We would love to help you plan!

Click here for the thread.
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Old 06-19-2009, 06:58 PM   #13
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I'm over there on that thread. I just don't want to plan TOO much before I get dates. I have an idea but don't want to get too ahead of myself

But thanks for looking out for me!
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Old 06-20-2009, 06:48 PM   #14
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Here are some more pictures of Mikaela.

This is from our balcany while on vacation in Gulf Shores.


At the baseball game....


At my sister in law's sister's wedding. That is me with her....
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Old 06-20-2009, 06:55 PM   #15
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Quote:
Originally Posted by wkualum View Post
I'm over there on that thread. I just don't want to plan TOO much before I get dates. I have an idea but don't want to get too ahead of myself

But thanks for looking out for me!

there is never planning to much before you actually know when your going!! and your daughter is sooo cute!!!
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