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Old 04-01-2013, 05:36 PM   #76
NEmel
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Hope everyone had a wonderful Easter. Looked at the forcast on weather.com and it looks great for the weekend and next week! We have one of Carter's going away parties tomorrow night with his wish granters. We also invited 2 of his friends, grandma, and grandpa.
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Old 04-01-2013, 05:55 PM   #77
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I guess I'll have to attempt an ADR for it then.
Hope you can get one.

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Hope everyone had a wonderful Easter. Looked at the forcast on weather.com and it looks great for the weekend and next week! We have one of Carter's going away parties tomorrow night with his wish granters. We also invited 2 of his friends, grandma, and grandpa.
So exciting that you're leaving this week. So happy that the forecast is good. Have a great time at the party tomorrow night.
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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 04-02-2013, 11:27 AM   #78
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At the hospital waiting for Ja's LP. She's neutropenic, so off the immunosuppressant for the week. I think nerves are setting in; maybe traveling while on treatment wasn't a good idea....
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Old 04-02-2013, 12:14 PM   #79
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At the hospital waiting for Ja's LP. She's neutropenic, so off the immunosuppressant for the week. I think nerves are setting in; maybe traveling while on treatment wasn't a good idea....
Hugs. We're heading to the hospital to get test results right now, so I am right there with you ...
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Old 04-02-2013, 12:56 PM   #80
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Thanks and car seats...

Thank you guys! It is so nice to read about all of your trips and the amazing kids going on Wish Trips. I am blown away by the strength and courage that comes in tiny little packages.

I haven't read all of the car seat posts but when I asked about whether to take our boosters, we were told that GKTW or MAW would provide them if needed. Is that an option?
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Old 04-02-2013, 12:58 PM   #81
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At the hospital waiting for Ja's LP. She's neutropenic, so off the immunosuppressant for the week. I think nerves are setting in; maybe traveling while on treatment wasn't a good idea....

Hugs to all of you! I am hoping for some good numbers soon and a cooperative LP recovery.
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Old 04-02-2013, 04:23 PM   #82
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At the hospital waiting for Ja's LP. She's neutropenic, so off the immunosuppressant for the week. I think nerves are setting in; maybe traveling while on treatment wasn't a good idea....
Prayers coming your way.
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Old 04-02-2013, 06:59 PM   #83
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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.
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Old 04-02-2013, 10:43 PM   #84
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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!
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Old 04-02-2013, 10:43 PM   #85
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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.
Healthy vibes Jack's way!
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Old 04-02-2013, 10:46 PM   #86
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Originally Posted by TheGryphonsDen
Thank you guys! It is so nice to read about all of your trips and the amazing kids going on Wish Trips. I am blown away by the strength and courage that comes in tiny little packages.

I haven't read all of the car seat posts but when I asked about whether to take our boosters, we were told that GKTW or MAW would provide them if needed. Is that an option?
MAW is arranging booster seats with our rental car company. I don't know if I would trust a rental carseat, but I think a booster should be fine.
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Old 04-02-2013, 10:47 PM   #87
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Hugs. We're heading to the hospital to get test results right now, so I am right there with you ...
How'd things go for you?
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Old 04-03-2013, 01:54 AM   #88
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Jo - Praying Ja's ANC recovers quickly. Hugs for you.

Julie - Praying for Maddie's results Hugs for you too

Victoria - So sorry Jack is still sick. Praying for him, and that your family is healthy for the trip. I hope he has a wonderful party this weekend. Sorry you're so stressed, praying you'll have peace of mind. Lots of hugs
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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
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Old 04-03-2013, 08:42 AM   #89
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How'd things go for you?
Not great, but thanks for asking! Right now, we are waking Maddie up throughout the night to feed her in order to keep her blood sugars stable. It's exhausting for us all and she's barely awake enough to safely eat. She had a bunch of labs done to see where the hypoglycemia is coming from, but the results weren't all back yet (at our appointment). We have two options right now: either keep doing what we are doing, get through our trip in 4 weeks, and manage any crises as they come up or hospitalize her on overnight IV and/or ng-tube feeds until the rest of the results come back (which could take weeks). I'm not going to keep her in the hospital indefinitely, waiting for results to come back, so we'll keep waking her up and feeding her throughout the night. Unless the tests show something clear and treatable (which never happens in our world!) Maddie will likely end up with a g-tube shortly after returning from Disney. We also found out that her growth hormone levels are low, so will need to do more testing on that issue as well. I am overwhelmed and frustrated, but trying to stay focused on getting through the next few weeks and enjoying our trip!
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Old 04-03-2013, 10:32 AM   #90
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Red face Overwhelming Emotions!

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
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