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Old 10-08-2012, 10:13 PM   #16
lakinbum93
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Originally Posted by aym4Him View Post
Do y'all see someone out of Children's? We go to Medical City. Just curious!
Yes, we see Dr. Zellers at Children's Dallas. I know of a couple of people that have gone to Medical City as well.

Thanks for the well wishes and encouragement!
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Old 10-10-2012, 12:59 AM   #17
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Sorry to hear that the paperwork got lost and now you have to go later than planned. Great news though that you can extend!

Praying the holter monitor doesn't show anything abnormal on it. Trev has yet to have one. So I will be curious to see how he handles it!

Hopefully you can get the dates for the end of November.

Jackie
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Old 10-14-2012, 12:48 PM   #18
lakinbum93
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We have our dates!!!! Yay!!!!

A lady from MAW called Friday and said she wanted to go ahead and book our dates at GKTW!!!! Since they knew the cardiologist already agreed on the wish and they will have the paperwork this week, she wanted to get us booked so our dates don't get booked up!

So, we will be at GKTW Monday Nov 26-Sun Dec 2nd and then extend to Fri Dec 7th! I am so excited! I feel like I can really start planning now and really get the kids involved. My husband is having a hard time accepting that it is actually official! He is of the mentality you gotta see it to believe it and we don't have the concrete evidence in our hands, so he has a hard time planning anything. But I'm goin' with it!

I am going to do the chain link project like so many of you have done, with a small gift every 5 days. I am also having Mickey Mouse cake balls done up with our date on it. I will post pictures when it's done!

And then there's the birthday/reveal party I've got to plan! Sheesh...it's 43 days away, but I know it will be here before we know it. And I want to make sure I cherish each exciting moment I can!

Also, Kaston had his Holter done Friday. We won't know the results until we get to Dallas the 19th. And, of course, he didn't have any unusual episodes while he was on it. Not surprising. That's how it always works, right?!

This is gonna be great!


Last edited by lakinbum93; 10-14-2012 at 01:03 PM.
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Old 10-14-2012, 12:55 PM   #19
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Wonderfull news that you have your dates confirmed
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Old 10-16-2012, 10:14 PM   #20
lakinbum93
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SUPER EXCITED...we have our flight info already!

Got a message from our Wish Grantor today and everything is confirmed for Kaston's MAW!!!!! We will be staying at GKTW Nov 26-Dec 2 and then extending to Dec 7. I'm a little bummed though because our flight doesn't even get into Orlando until 9:30 pm so we will miss the Halloween night at GKTW and it's going to make for a really late night. And then our flight home is early in the morning, so we really are losing an entire day. BUT, I really can't complain and have realized that I can't be in control of EVERYTHING!!! Right?! I am learning through this process that I seem to have some control issues apparently!

Also, we are going to have his 10th surprise birthday/MAW reveal party on the 17th! It's going to be SO AMAZING!! I just can't wait! Lots of planning to do for the party and for the trip...I simply LOVE the anticipation of it all. The kids started their countdown chain and I can't wait to give them their first gift! Here's what we did for them to announce the date:



Looking forward to sharing more with everyone! Please keep us in your prayers as we head to
Dallas on Thursday for a cardiology check-up. Praying for NO PACEMAKER!!!! We want to delay it as long as possible!

And please keep little Audree in your prayers too...she is 1, has been on the transplant list for almost a year and got her new heart 2 days ago! So far, so good...just trying to balance all the meds out right now. Can't wait to visit the family when we go. They are from our city as well and have been living apart for almost a year. Dallas is 6 hours from where we live! So it's been super hard on their young family.

Blessings!
Jamie

Last edited by lakinbum93; 10-16-2012 at 10:40 PM.
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Old 10-17-2012, 07:42 PM   #21
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Hello!!

I saw that you got DATES!!! yeah!!!!

So I have updated your TR on the Wish Trippers thread so that people can find you guys!

It is a total bummer that you guys have to get there so late - I am glad you are extending so that you guys will be able to sorta "make up" one of the days!
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Old 10-18-2012, 01:12 AM   #22
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Yay for dates and flight times! Bummer you are getting there so late, but it is great that you get to extend! What a fun way to do his reveal party.

Jackie
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Old 10-30-2012, 02:55 PM   #23
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Hey, we'll be getting to GKTW on Dec 1. Also, we too tried to schedule our trip around my husbands crazy schedule. He works 3 days on, 3 days off, 3 nights on, an so on, 13 hours shifts so we usually like to take our vacations when it would be 9 days off.
We arrive in Orlando at 230pm on Dec. 1, maybe we'll see you
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Old 10-30-2012, 11:14 PM   #24
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Update

I just realized I haven't updated since we went to Dallas for his 6 month check-up! So, the Holter didn't show anything significant or alarming. So that's good. However, he's ranging from 44 to 196 so it's a little too low and a little too high. But apparently, nothing alarming until he's in the 30's for extended periods of time.
As far as the epidodes go, he is concerned about those. Could be a fluke deal, could be something real. If he continues to have them, then he wants to do an event recorder for a few weeks. He luckily hasn't had any since before we went, so we're keeping our fingers crossed! He also has been complaining of his "gut" hurting, so he checked out his liver pretty good. Because of the type of surgeries he's had (the Glenn and Fontan) and the circulation he now has, he is at risk for liver problems. So, he wants to make sure that his liver is checked if he keeps complaining of this.
Something we discussed in detail was some recent studies of neurological outcomes in children with CHD. They are starting to see a very high percentage (75%) of complex CHD children like Kaston (who is hypoplastic or single ventricle) have more than just the health issues to deal with. Neurologically speaking they are seeing more and more issues with hyperactivity, academic achievement, language development, visual construction, attention, executive functioning, fine & gross motor skills and psychosocial maladjustment. Kaston has had delays or problems in ALL of these issues but has never received any type of therapy, EVER! Nine years ago, the goal was to just keep him alive. Now that these kids are being studied more and a larger amount are living longer, they are starting to see these other problems within this older population and have started implementing all kinds of therapy earlier on in life.
SO...what does that all mean? He wants Kaston to be seen by a developmental psychologist to evaluate him to see if there's any therapy he could benefit from to help him with these areas. Now, we homeschool, therefore we are able to already concentrate on these areas and have molded and built a curriculum to help him learn at his best potential. He also attends karate 2 times a week where they learn how to use their bodies, he has to learn to concentrate and be in control of his body and motions, he has to learn sequences of movements (he is in black belt club so he has to learn katas with weapons like nun-chuks, bo-staff, and camas and it is memorizing movements - 20 or more in sequence). So, really, we aren't sure that we want to go as far as getting him evaluated, labeling him, and getting him therapy that little is known about for these issues. #1 We already know what areas he is lacking in #2 The school (me & my husband!) has already been notified of these problem areas (most people's main concern) #3 We already are utilizing programs to help him with the problematic areas (through karate). We really feel like this is probably the very best thing we can do for him! And besides that, most insurance companies have a problem paying for any type of alternative therapy anyways (we did a $3,000 vision therapy program that really didn't help him any).
So, with all that said, we go back to Dallas in another 6 months and just keep monitoring his heart rate and episodes as they occur. It's the waiting game...as it's been since he was born, almost 10 years ago!

Which brings us to his surprise party! I have only planned the date, time and place! I have no idea how I'm going to decorate or what kind of cake to get or a theme or anything! And we're only 18 days away! I at least got the invitation emailed out and am already getting confirmations, and I think there will be alot of people coming. So that's going to be exciting for him. I need to get with our Wish Grantor and figure out what she is wanting to do as well.

As far as the trip is concerned...I'm a little freaked out about getting there so stinking late! I think my best bet is to contact GKTW once we get our packet and make arrangements with them to do a late night impromptu orientation? We seriously, won't be getting to the village until possibly 11:00 or 12:00 at night because our flight was booked so late. And I am seriously considering rearranging our entire itinerary so that we just hang out at the village the next day.

We have been doing the countdown chain and the kids have been loving it!Every 5 days they get a gift. And remember, my kids are almost 10 & 13, so their gifts are very different from what most do! So far they have gotten the Disney Cake pops, M&M tubes full of quarters and pennies for the penny machines, 20 Disney trading pins each, an iTunes gift card for new music for the flights with a Disney toothbrush and Disney key chain...and still to go is a bucket full of candy, gum, Disney candy, Disney spinners, etc. / Disney pajamas for Mayor Clayton's tuck-in visit! / Disney cup with a $25 Disney gift card to spend as they choose at Disney World / and the best one will be an iPad! I have been saving up money for a long time and have really been wanting to get one for them to use for school (and for travelling too!) and I figured it would be a great thing to get them (us) for this trip!

Gonna go play Connect Four with the boy, so I'd better get off here for now! Thanks for coming along!
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Old 10-31-2012, 06:28 AM   #25
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Wish Mom Alumni here (and fellow heart Mom)...when I had time (eons ago) I always posted happy pics for all. Taking time to do that this morning for my fellow Wish Families...it WILL be the most magical trip! We had to have a Cardiac Cath two weeks after we got back (was hanging over our heads the entire trip)...and Disney helped ease the worry. There is true magic there, everything will be wonderful and I love the idea of a down day right off, the village is MAGICAL!
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Old 11-05-2012, 05:08 PM   #26
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Originally Posted by carebearkidney View Post
Kaston is a cutie - oh wait, I'm not supposed to say that am I? He's HANDSOME and very MATURE looking.
I've been reading PTRs, and it's hard to refrain from calling the adorable young men (including Kaston) adorable.


I'm sorry that Kaston, and your family, has had so much to go through. So happy that Kaston is getting his wish.

I hope you have a wonderful trip.

You mentioned that your kids may be too old for autographs - it does depend on your kids' personalities, but there are plenty of adults that thoroughly enjoy collecting autographs. My DD is 14, and still enjoys it, as well as the pins & pennies.
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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 11-18-2012, 11:52 AM   #27
lakinbum93
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We had Kaston's surprise 10th birthday party/MAW send-off trip last night! He was so surprised and lots of people showed up! It turned out to be a great party, and he was presented with a MAW bag o goodies...and our trip info packet.

We leave a week from tomorrow! I just can't believe it's already here. I do have a couple of questions however.
#1 I noticed that orientation is at 7:00 pm. Our flight doesn't even get there until 9:30. Will they do an orientation with us when we get there or will we need to wait until the next day?
#2 Does everyone wear their MAW shirts on the flight there, or does just the Wish kid? Which is the best parks to wear our shirts? Do it as a family or just the wish kid?

I'm sure I'll have more questions! And I would love to know who all will be there when we are! I think I'm going to bring pins and postcards from our city to give to the other kids we meet. Anyone want to join me? We are already collecting postcards from across the country for US History (we homeschool) and thought it might be nice to trade with some folks at GKTW too! Let me know if anyone is interested!
So much to do....
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Old 11-18-2012, 05:40 PM   #28
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Yay for the party Glad you had a great time. Hope he had a wonderful birthday.
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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 11-21-2012, 11:20 PM   #29
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We hope your family has a wonderful Thanksgiving!
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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 11-22-2012, 01:39 AM   #30
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Quote:
Originally Posted by lakinbum93 View Post
We had Kaston's surprise 10th birthday party/MAW send-off trip last night! He was so surprised and lots of people showed up! It turned out to be a great party, and he was presented with a MAW bag o goodies...and our trip info packet.

We leave a week from tomorrow! I just can't believe it's already here. I do have a couple of questions however.
#1 I noticed that orientation is at 7:00 pm. Our flight doesn't even get there until 9:30. Will they do an orientation with us when we get there or will we need to wait until the next day?
#2 Does everyone wear their MAW shirts on the flight there, or does just the Wish kid? Which is the best parks to wear our shirts? Do it as a family or just the wish kid?

I'm sure I'll have more questions! And I would love to know who all will be there when we are! I think I'm going to bring pins and postcards from our city to give to the other kids we meet. Anyone want to join me? We are already collecting postcards from across the country for US History (we homeschool) and thought it might be nice to trade with some folks at GKTW too! Let me know if anyone is interested!
So much to do....
Wear your wish shirts! It feels special! So excited for you and I love the postcard idea ( we also homeschool).






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