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Old 09-27-2010, 01:10 PM   #1
mjarecki
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Waiting for dates!

Our son Michael, age 7, has been granted a wish through Make A Wish. Here's a little about Michael's story:

Michael was a normal 7 year old boy until February of 2010. He spent most of February and March sick with high fevers and a bad cough. We were told over those 2 months that he had strep, flu and pneumonia. He wasn't getting better. I kept taking him into the doctor every few days and they kept sending us back home. Finally on March 30th I had had it. He was still coughing, running a fever and was having a hard time breathing. He couldn't get up a flight of stairs withouht having to sit down and take a rest to catch his breath. This was just not normal. I am hyper sensitive to health issues because my mom is a lung transplant patient. She's had 2 transplants and suffers from a form of interstitial lung disease. At the doctor on the 30th they also noticed his rapid breathing and high heart rate. They thought it might be his heart so they sent us to the hospital for an echo and another chest x-ray (4th in 2 months). We did those and went home and as soon as we got home they told us to return to the hospital to do a CT of his chest. We went back and did that and later that night they said we needed to see the pulmonologist right away. The next day we went to meet the pulmonologist. He told us that Michael has Bronchiolitis Obliterans and Bronchiectasis. Bronchiolitis Obliterans is a form of chILD. chILD is Childrens Interstitial Lung Disease. There are several forms of chILD. chILD is very rare. Basically kids with chILD have lost lung function. Their lungs are like dry sponges, they don't contract correctly, which makes oxygen exchange difficult. Kids with chILD have a hard time fighting off disease and are often sick. The diseases of chILD are very rare and therefore any treatment is still in the experimental stages.
Michael contracted his Bronchiolitis Obliterans from an adneovirus. Since diagnosis Michael is now on oxygen at night, has a port and is receiving iv treatments of IVIG and high dose steroids, has a percussion vest and does several other treatments and medicines.
It's been a tough year so far. So when our pediatrician said he was referring Michael to Make A Wish we were so excited!
Michael thought long and hard about his wish and settled on Disney World. We were just there in 2009 and he and his younger brother had a great time. Our wish granters came in early September and we are still waiting for dates of our trip. We got notice that the trip was approved, but not scheduled yet. We are hoping to go sometime this fall.
I'll add more details as we get closer!
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Old 09-28-2010, 01:42 PM   #2
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Hello!!!

I got your email and found this thread!

I will post a link on the wish trippers thread so that they can know you are over here!
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Old 09-28-2010, 02:53 PM   #3
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Hello! Welcome to the boards! Can't wait to read more about your special kiddo and follow along on your journey!

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Trip Report: Davys in Wonderland- A baby's View of Disney
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Old 09-28-2010, 04:26 PM   #4
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Welcome to the Dis Boards! Thanks for replying on my PTR! So exciting that you will be there at the same time as us! I am so glad Michael is getting his wish! I have never heard of the lung disease that he has, but I am going to read up on it. Sounds like CF in a lot of ways! I am subbing to your PTR and along for the ride!
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PTR- http://www.disboards.com/showthread.php?t=2450895

TR- Hayley's Magical Make A Wish Trip-
http://www.disboards.com/showthread....7#post39032507
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Old 10-02-2010, 01:10 AM   #5
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Hi and welcome to the Disboard. I'm so glad Michael is getting a wish. I can't wait to hear more about your PTR.
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Kerri-19,Korissa(wish Child) 17, Kyra 15, Steven 11, Kylee 8 (post wish child),
PTR..http://www.disboards.com/showthread....1#post37518385

TR..http://www.disboards.com/showthread.php?p=40564833

http://www.facebook.com/HopeforKylee
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Old 10-05-2010, 08:21 AM   #6
mjarecki
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Flights are booked!

We got notice yesterday that our flights are booked! Unfortunately then I got home and saw that my husband has been called up for jury duty during the time of our trip, I'm really hoping he can talk his way out of it or get a postponment!
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2005 Coronado
2009 Port Orleans
2010 Wish Trip Give Kids the World
2011 Caribbean
2012 Disneyland Hotel
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Old 10-05-2010, 03:09 PM   #7
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That is crappy! I bet though he can get his jury duty postponed until later. He should ask about it and tell them what is going on, and it shouldn't be a real problem. I have seen lots of people do that. Hopefully it will work for him. There should be a number he can call on his summons. Hope that helps you at least feel a little better- and I hope it works out!
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Old 10-05-2010, 03:29 PM   #8
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So happy

I am so very happy for you and your family!
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Old 10-09-2010, 11:28 AM   #9
mjarecki
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PTR-Starting to plan out our days!

Alright, since I'm home resting after getting my wisdom teeth pulled I've decided to start planning our trip a bit more. Here's what I've got so far, this is very tentative! Any suggestions would be great!

Monday, November 15th
Leave Omaha 6:25 am
Arrive in Orlando 11:25 am
Heat to GKTW
Hopefully can hit an afternoon orientation.
Plan on staying at GKTW the rest of the day

Tuesday, November 16th
Universal Studios/IOA all day

Wednesday, November 17th
Disney Park-not sure which one yet, either MK, Epcot or Hollywood Studious
8:00 pm Polynesian for luau

Thursday, November 18th
Sea World
Back to GKTW for Christmas

Friday, November 19th
Magic Kingdom
Evening-Mickey's Very Merry Christmas Party

Saturday, November 20th
Disney Park not sure which one, MK or Epcot probably

Sunday, November 21st
Maybe Universal? or just hang at GKTW
Flight back home leaves at 6pm
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mom to Michael (wish kid), Lance and Alex and wife to Eric

2005 Coronado
2009 Port Orleans
2010 Wish Trip Give Kids the World
2011 Caribbean
2012 Disneyland Hotel
Coming in 2013 Polynesian
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Old 10-10-2010, 01:50 AM   #10
Mom2mitokids
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Quote:
Originally Posted by mjarecki View Post
Alright, since I'm home resting after getting my wisdom teeth pulled I've decided to start planning our trip a bit more. Here's what I've got so far, this is very tentative! Any suggestions would be great!

Monday, November 15th
Leave Omaha 6:25 am
Arrive in Orlando 11:25 am
Heat to GKTW
Hopefully can hit an afternoon orientation.
Plan on staying at GKTW the rest of the day

Tuesday, November 16th
Universal Studios/IOA all day

Wednesday, November 17th
Disney Park-not sure which one yet, either MK, Epcot or Hollywood Studious
8:00 pm Polynesian for luau

Thursday, November 18th
Sea World
Back to GKTW for Christmas

Friday, November 19th
Magic Kingdom
Evening-Mickey's Very Merry Christmas Party

Saturday, November 20th
Disney Park not sure which one, MK or Epcot probably

Sunday, November 21st
Maybe Universal? or just hang at GKTW
Flight back home leaves at 6pm
Looks good to me.
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Kerri-19,Korissa(wish Child) 17, Kyra 15, Steven 11, Kylee 8 (post wish child),
PTR..http://www.disboards.com/showthread....1#post37518385

TR..http://www.disboards.com/showthread.php?p=40564833

http://www.facebook.com/HopeforKylee
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Old 10-10-2010, 08:25 AM   #11
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Hi Mindy,

I am happy you came over to our PTR and said hello. It IS cool that Michael and Lisa are birthday twins and for such a cool birthdate 3/3/03!

I am excited for you and your MAW journey! We will live vicariously through you as you have time to update. I know firsthand computer time is often limited due to the needs of the family. Just write in when you have time and post pictures if you are able…I LOVE pictures!

Jury duty…YUCK! I have been called every two years since I turned 18...no kidding! He will definitely be able to get a postponement to a different date.

Hugs my new friend, I am so excited for you!

Blessings,
Judy
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Old 10-15-2010, 10:50 PM   #12
mom2OandE
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Quote:
Originally Posted by mjarecki View Post
Alright, since I'm home resting after getting my wisdom teeth pulled I've decided to start planning our trip a bit more. Here's what I've got so far, this is very tentative! Any suggestions would be great!

Monday, November 15th
Leave Omaha 6:25 am
Arrive in Orlando 11:25 am
Heat to GKTW
Hopefully can hit an afternoon orientation.
Plan on staying at GKTW the rest of the day

Tuesday, November 16th
Universal Studios/IOA all day

Wednesday, November 17th
Disney Park-not sure which one yet, either MK, Epcot or Hollywood Studious
8:00 pm Polynesian for luau

Thursday, November 18th
Sea World
Back to GKTW for Christmas

Friday, November 19th
Magic Kingdom
Evening-Mickey's Very Merry Christmas Party

Saturday, November 20th
Disney Park not sure which one, MK or Epcot probably

Sunday, November 21st
Maybe Universal? or just hang at GKTW
Flight back home leaves at 6pm
We are going to the party on the same night! I hope you have an amazing trip! Many prayers for your family and your sweet boy!
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Old 10-18-2010, 02:44 PM   #13
mjarecki
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The Countdown is On!

We are down to 28 days until we leave for our MAW Trip. Michael is getting really excited. The boys have started planning their top rides that they want to do first:

Pirates of the Caribbean
Haunted Mansion
Jungle Cruise


We're thinking about hitting Downtown Disney on our first night since the last time we were there we didn't get to spend much time there. The boys really want to go back to the toy store there. I'm hoping maybe we can do dinner there that night.
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Mindy
mom to Michael (wish kid), Lance and Alex and wife to Eric

2005 Coronado
2009 Port Orleans
2010 Wish Trip Give Kids the World
2011 Caribbean
2012 Disneyland Hotel
Coming in 2013 Polynesian
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Old 10-18-2010, 04:04 PM   #14
tinytreasures
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sounds like you have a great plan
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Old 10-18-2010, 07:12 PM   #15
mjarecki
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Some Photos



Michael (wish kid)



Michael


Lance, Alex and Michael



Alex and Michael



Lance

Mindy, Eric, Michael, Lance and Alex
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mom to Michael (wish kid), Lance and Alex and wife to Eric

2005 Coronado
2009 Port Orleans
2010 Wish Trip Give Kids the World
2011 Caribbean
2012 Disneyland Hotel
Coming in 2013 Polynesian
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