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Old 04-03-2013, 11:36 AM   #91
Moodyzblu
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Originally Posted by Meeks23 View Post
Hello Everyone! Ok so I am new to the boards so please bear with me!!! I have been checking out the boards and am really excited to begin the pre trip report and everything...I am just overwhelmed with emotions We are a family of 5 (3 girls ages 11, 9, 4....2 older girls are my soon to be step daughters!!!!!!!!). Our little princess (Jerzey) that is 4 was born with multiple heart conditions. She has had 4 open heart surgeries and a diaphram surgery due to complications. Being granted this wish is absolutely amazing! This is something that we could never do with our girls in a million years. But I seem to still get a wave of emotions that come over me when I think of all that we have had to endure these last few years and how it is great to be going and at the same time sad cuz of why we are going....does that make sense? I am sure I am just having a moment! LOL I think having these boards will really help me thru all of it

Anyway our trip has been scheduled for Nov 25- Dec 1, 2013!!!! We leave for Disney 2 days after Allen (girls' dad) and I get married! What an amazing trip it will be I am kinda nervous about it being over Thanksgiving but should be fun. My parents also get to tag a long with us which is just wonderful since they have been our rocks thru our Heart Journey so far!!!

As for Jerzey, the docs hope she won't need another surgery for more than 10 years and hopefully at that point it won't be the invasive open heart surgeries!!!

Have a wonderful day


I'm Michelle, another heart mom ! My son, Jayden got his wish last April .. in fact it was 1 year ago TODAY that we were on our way to Give Kids the Wolrd !!

Glad to have you and looking forward to hearing more about your trip !
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Old 04-03-2013, 01:58 PM   #92
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Julie - So sorry for all that you're going through. Praying for Maddie, and that they're able to find & resolve the cause of the hypoglycemia. Is there a reason why the overnight feeds have to be inpatient and can't be done at home? I symapthize about results that never show something clear & treatable Praying she won't need the g-tube, and that the growth hormone issue will be easily resolved. Lots of hugs & prayers



Meeks23 So sorry for all that Jerzy, and your family, has gone through. Yay that she's getting her wish Congratulations on the upcoming wedding. So nice that your parents are able to go also.
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Pretrip Report: Angel's Make a Wish Cruise on the Dream /and extended days at WDW PTR :We have dates 4/13-25
Trip Report: Angel's Make a Wish DREAM Cruise & extended days at wdw: April 13-25, 2013

Previous trips: 2013 Apr. 18-25 2010 May 8-15 2009 Dec. 4-11 2008 Dec. 15-24 2008 Aug. 30-Sept 7
2007 Sept. 1-8 2006 Dec. 9-16 2006 Sept. 26-Oct.3 2005 Sept. 25-Oct.8 2004 Dec. 11-21 All at POP
CRUISE 2013 Apr. 14-18 Disney DREAM
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Old 04-03-2013, 02:51 PM   #93
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[QUOTE=angel's momma;47995742]Julie - So sorry for all that you're going through. Praying for Maddie, and that they're able to find & resolve the cause of the hypoglycemia. Is there a reason why the overnight feeds have to be inpatient and can't be done at home? I symapthize about results that never show something clear & treatable Praying she won't need the g-tube, and that the growth hormone issue will be easily resolved. Lots of hugs & prayers QUOTE]

They could be done at home if we had a feeding tube, which we don't anymore. We are feeding her through the night right now by waking her up every 3 hours to eat. The doctor was saying that if that was too much, they could put her in the hospital and have her fed overnight by nurses. We'd rather be sleep-deprived and do it ourselves. But once the trip us over, we'll likely get the g-tube. I'm really okay with the g-tube; it's just this "wait and see and keep doing what you are doing" stuff that is killing me!
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Old 04-03-2013, 08:14 PM   #94
Kenziema
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Originally Posted by Meeks23 View Post
Hello Everyone! Ok so I am new to the boards so please bear with me!!! I have been checking out the boards and am really excited to begin the pre trip report and everything...I am just overwhelmed with emotions We are a family of 5 (3 girls ages 11, 9, 4....2 older girls are my soon to be step daughters!!!!!!!!). Our little princess (Jerzey) that is 4 was born with multiple heart conditions. She has had 4 open heart surgeries and a diaphram surgery due to complications. Being granted this wish is absolutely amazing! This is something that we could never do with our girls in a million years. But I seem to still get a wave of emotions that come over me when I think of all that we have had to endure these last few years and how it is great to be going and at the same time sad cuz of why we are going....does that make sense? I am sure I am just having a moment! LOL I think having these boards will really help me thru all of it

Anyway our trip has been scheduled for Nov 25- Dec 1, 2013!!!! We leave for Disney 2 days after Allen (girls' dad) and I get married! What an amazing trip it will be I am kinda nervous about it being over Thanksgiving but should be fun. My parents also get to tag a long with us which is just wonderful since they have been our rocks thru our Heart Journey so far!!!

As for Jerzey, the docs hope she won't need another surgery for more than 10 years and hopefully at that point it won't be the invasive open heart surgeries!!!

Have a wonderful day
Welcome, congrats on your upcoming wedding. Sorry to hear about your little princess, but here you'll meet a lotta folks you you'll find are helpful about a lot more than just a MAW trip
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Old 04-03-2013, 08:16 PM   #95
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Thanks for the good thoughts, everyone. It was a long day, but she was in great spirits when we got home. I think the low neuts just rattled me - She's been perfectly fine, so I wasn't expecting it. All other counts came back normal, so hopefully with a week off her meds she'll bounce back quickly. Other than being stuck at home with me instead of school, where she'd rather be, lol!
We've had to do a few weeks off med's a couple of times due to low neutrophils. Hope she comes back quick, with Kenzie it takes about a week and a half for her counts to get to where they want them 500+ to go home.
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Old 04-03-2013, 08:18 PM   #96
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So stressed.....we leave two weeks from okay and jack has a temp. Tummy ache and headache. He has been sick for the last few weeks. First strep now some virus. Please send prayers that he gets healthy and we are healthy for our trip. We have his send off party this weekend too. I am so stressed. Hopefully he ill bounce back quickly!
Prayers JWCJ.
I have my fingers crossed for you guys.
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Old 04-04-2013, 12:05 AM   #97
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Originally Posted by Mom2M07 View Post
They could be done at home if we had a feeding tube, which we don't anymore. We are feeding her through the night right now by waking her up every 3 hours to eat. The doctor was saying that if that was too much, they could put her in the hospital and have her fed overnight by nurses. We'd rather be sleep-deprived and do it ourselves. But once the trip us over, we'll likely get the g-tube. I'm really okay with the g-tube; it's just this "wait and see and keep doing what you are doing" stuff that is killing me!
I'd want to avoid the hospital stay too. Yeah, not having answers isn't fun.
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Me - Christi DH - Tom DD - Angel 15 (wish kid)

Pretrip Report: Angel's Make a Wish Cruise on the Dream /and extended days at WDW PTR :We have dates 4/13-25
Trip Report: Angel's Make a Wish DREAM Cruise & extended days at wdw: April 13-25, 2013

Previous trips: 2013 Apr. 18-25 2010 May 8-15 2009 Dec. 4-11 2008 Dec. 15-24 2008 Aug. 30-Sept 7
2007 Sept. 1-8 2006 Dec. 9-16 2006 Sept. 26-Oct.3 2005 Sept. 25-Oct.8 2004 Dec. 11-21 All at POP
CRUISE 2013 Apr. 14-18 Disney DREAM
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Old 04-04-2013, 12:31 AM   #98
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We've had to do a few weeks off med's a couple of times due to low neutrophils. Hope she comes back quick, with Kenzie it takes about a week and a half for her counts to get to where they want them 500+ to go home.
Thanks. Ja has dipped below 500 plenty of times before - I guess the difference is that last times it happened treatment was delayed, she was sent home not on meds until the next week. This time (in maintenance) the IT MTX was still done, and she was sent home. We have 2 doses of Lecovorin to give tomorrow, then bloodwork on Tuesday. Maybe the Lecovorin is just freaking me out.
Probably minor stuff, knowing my honey badger. I am just trying not to think of another large shoe dropping.
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Old 04-04-2013, 01:55 AM   #99
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We leave in just a little over a week for my dd make a wish trip to disney. This will be our first trip to disney world. I want to make sure that my children have a great time. How much money should we take. What should we do and what parks would be best my kids are 6,5,3, and 7 months. Make a wish called today to let me know that our itenerary was sent out. I was excited and forgot to ask what it was lol. Do they plan our day to day??
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Old 04-04-2013, 06:59 AM   #100
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We leave in just a little over a week for my dd make a wish trip to disney. This will be our first trip to disney world. I want to make sure that my children have a great time. How much money should we take. What should we do and what parks would be best my kids are 6,5,3, and 7 months. Make a wish called today to let me know that our itenerary was sent out. I was excited and forgot to ask what it was lol. Do they plan our day to day??
Yay Your family will have a great time

No, they don't plan out your day to day. The itinerary will have your travel info, list the expenses allotment you're receiving, any reservations (like dining, BBB) that they made for you (if applicable). Once you see the itinerary, you'll have a better idea of how much money you'll need, but they will cover most (if not all) of your expenses.

Knowing which parks are best for your family depends on your family. Some things to consider - What do they enjoy? How tall are they? (will prevent them from riding certain rides) Do they need lots of down time? AK for example - some families love it & spend all day there, others think it's boring & only do a few rides and then leave. Do they have favorite characters they want to meet? (some are only available at one park)
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Me - Christi DH - Tom DD - Angel 15 (wish kid)

Pretrip Report: Angel's Make a Wish Cruise on the Dream /and extended days at WDW PTR :We have dates 4/13-25
Trip Report: Angel's Make a Wish DREAM Cruise & extended days at wdw: April 13-25, 2013

Previous trips: 2013 Apr. 18-25 2010 May 8-15 2009 Dec. 4-11 2008 Dec. 15-24 2008 Aug. 30-Sept 7
2007 Sept. 1-8 2006 Dec. 9-16 2006 Sept. 26-Oct.3 2005 Sept. 25-Oct.8 2004 Dec. 11-21 All at POP
CRUISE 2013 Apr. 14-18 Disney DREAM
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Old 04-04-2013, 07:04 AM   #101
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I am just trying not to think of another large shoe dropping.
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Me - Christi DH - Tom DD - Angel 15 (wish kid)

Pretrip Report: Angel's Make a Wish Cruise on the Dream /and extended days at WDW PTR :We have dates 4/13-25
Trip Report: Angel's Make a Wish DREAM Cruise & extended days at wdw: April 13-25, 2013

Previous trips: 2013 Apr. 18-25 2010 May 8-15 2009 Dec. 4-11 2008 Dec. 15-24 2008 Aug. 30-Sept 7
2007 Sept. 1-8 2006 Dec. 9-16 2006 Sept. 26-Oct.3 2005 Sept. 25-Oct.8 2004 Dec. 11-21 All at POP
CRUISE 2013 Apr. 14-18 Disney DREAM
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Old 04-04-2013, 04:54 PM   #102
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Originally Posted by Meeks23 View Post
Hello Everyone! Ok so I am new to the boards so please bear with me!!! I have been checking out the boards and am really excited to begin the pre trip report and everything...I am just overwhelmed with emotions We are a family of 5 (3 girls ages 11, 9, 4....2 older girls are my soon to be step daughters!!!!!!!!). Our little princess (Jerzey) that is 4 was born with multiple heart conditions. She has had 4 open heart surgeries and a diaphram surgery due to complications. Being granted this wish is absolutely amazing! This is something that we could never do with our girls in a million years. But I seem to still get a wave of emotions that come over me when I think of all that we have had to endure these last few years and how it is great to be going and at the same time sad cuz of why we are going....does that make sense? I am sure I am just having a moment! LOL I think having these boards will really help me thru all of it

Anyway our trip has been scheduled for Nov 25- Dec 1, 2013!!!! We leave for Disney 2 days after Allen (girls' dad) and I get married! What an amazing trip it will be I am kinda nervous about it being over Thanksgiving but should be fun. My parents also get to tag a long with us which is just wonderful since they have been our rocks thru our Heart Journey so far!!!

As for Jerzey, the docs hope she won't need another surgery for more than 10 years and hopefully at that point it won't be the invasive open heart surgeries!!!

Have a wonderful day
I understand those moments, I have had them & still have them. I think you are going at a great time of year. We went in May 2011, we were able to visit again this year in Febuary. This is a great thread, everyone is so nice & willing to help in anyway they can. When we went on our MAW Trip, I was not able to have internet service at that time, I wished I had, because I have learned alot here, it made our second trip a little easier.

Praying for Jerzey, love the name!! Your family will have a wonderful time, just remember to enjoy GKTW Village, it is an awesome place full of Wonderful people!
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Old 04-04-2013, 05:02 PM   #103
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PRAYING FOR THE LITTLE ONES!
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Old 04-04-2013, 05:14 PM   #104
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Originally Posted by momma31 View Post
We leave in just a little over a week for my dd make a wish trip to disney. This will be our first trip to disney world. I want to make sure that my children have a great time. How much money should we take. What should we do and what parks would be best my kids are 6,5,3, and 7 months. Make a wish called today to let me know that our itenerary was sent out. I was excited and forgot to ask what it was lol. Do they plan our day to day??
Go to You-tube & check out some Disney World Video's, this might help some. My DD is 5yrs old & she liked all of the parks, of course some had more things to do for the younger children, IMOP, I think Magic Kingdom has more for the younger kids 6 & under. It is also the busiest park.
The night before, I would look at the parks & make a plan of what we wanted to do that day, sometimes we got it all done & sometimes we did not. Remember that you will not be able to see & do everything, just relax & enjoy. The itenerary just basically tells you the day you leave, what time to expect to arrive at GKTW & when you will be Leaving, the day to day is all up to you, if you want to go here or there or if you just want to stay at the village & not go anywhere for the day, it is all up to you.

I hope this helps some, Safe Travels!!
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Old 04-04-2013, 09:07 PM   #105
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Originally Posted by Meeks23 View Post
Hello Everyone! Ok so I am new to the boards so please bear with me!!! I have been checking out the boards and am really excited to begin the pre trip report and everything...I am just overwhelmed with emotions We are a family of 5 (3 girls ages 11, 9, 4....2 older girls are my soon to be step daughters!!!!!!!!). Our little princess (Jerzey) that is 4 was born with multiple heart conditions. She has had 4 open heart surgeries and a diaphram surgery due to complications. Being granted this wish is absolutely amazing! This is something that we could never do with our girls in a million years. But I seem to still get a wave of emotions that come over me when I think of all that we have had to endure these last few years and how it is great to be going and at the same time sad cuz of why we are going....does that make sense? I am sure I am just having a moment! LOL I think having these boards will really help me thru all of it

Anyway our trip has been scheduled for Nov 25- Dec 1, 2013!!!! We leave for Disney 2 days after Allen (girls' dad) and I get married! What an amazing trip it will be I am kinda nervous about it being over Thanksgiving but should be fun. My parents also get to tag a long with us which is just wonderful since they have been our rocks thru our Heart Journey so far!!!

As for Jerzey, the docs hope she won't need another surgery for more than 10 years and hopefully at that point it won't be the invasive open heart surgeries!!!

Have a wonderful day
First off.... WELCOME! and congrats on your up coming wedding and Jerzey's wish trip! We just got back last week from my daughter's MAW trip to Disney and GKTW. If you have any questions feel free to fire away. My Emma, 10, is a CHD WARRIOR too. She was born with TGA, PS, and a VSD.
Can't wait to get to know you and the whole family
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