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Old 07-20-2012, 11:06 PM   #16
Lilfoot93
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MAW extra activities

A couple weeks ago we got a letter from MAW stating that sometimes the MAW kids waiting for their wish are invited to different sporting events and such. Well today we got a call that Trevor and our family get to spend a special day during Seafair! We get to tour the hydroplane pits have lunch and watch the blue angels practice. How cool is that

The only bad part is we do not think my hubby can get the time off of work so I need to find someone that wants to go with and will help me with 3 kiddos!

This will be great for Trev to do these little things while waiting for his trip. Especially since we will not be going until May!

On another note some of my family has expressed negativity about Trevor qualifying for MAW. How we are taking advantage and Trev is fine. That has been a little hard to deal with. Funny thing is with each of his 6 surgeries these are the same people that act like open heart surgery on your baby is no big deal

Off to start planning with Trev for his trip!

Jackie
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Old 07-20-2012, 11:38 PM   #17
carebearkidney
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I wanna go! I saw the Blue Angels when my husband and I lived in Wilmington NC back in 2004 and he was the cutter the Diligence that is stationed there. I'm sure you will all enjoy it very much - bring earplugs if noise bothers any one though.
Sorry you are not getting the support you and especially your son needs. I have had similar issues with some family members or friends wondering why we are going since Matthew is "cured". I have to remind them that transplant is NOT a cure. He has already went into rejection once and luckily it was stopped. When Matthew was at his worst, he was too young to qualify, but seriously...this kid has more lives than a cat and has pulled though so many times. I have picked out funeral outfits SO many times and been told to have family near three times during different surgeries. Your son has been though a lot and just because things are going well now does not negate all the hardships and difficulties he has been through or might be through again one day. I've always said that some people just don't get it unless they live it, but that I wish with all my heart they never have the opportunity.
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Trick or Treat Trip Oct 11-16th 2014
Shades of Green :

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Our kidney-versary trip - celebrating one year anniversary of kidney transplant!
kidney-versary trip 2011

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Old 07-21-2012, 12:02 AM   #18
Lilfoot93
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How cool that you have gotten to see them! We have never seen them before although they come every year about an hour from where we live! Thanks for the suggestion of earplugs. Not sure I would have thought of that one

I have read your sons story and he has gone through A LOT! I agree transplant is not a cure! How scary that you had to pick out funeral outfits for him He is truly a living miracle!

There is no "cure" for Trevor. He was born with his heart defect and it will never be "fixed" As long as he is here he will always need surgeries. Currently he does not have a pulmonary valve or a conduit. So we are waiting until he gets "worse" before they will make him "better" but as those wear out he will need new ones. You are right. People do not always understand unless they have been down a similar path. I too, would not wish this on others too. It is nice to have a "family" that understands what our kiddos have gone through and why they are so deserving of a wish!

Jackie
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Old 07-21-2012, 10:24 AM   #19
carebearkidney
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Have they talked about heart transplant, or is it better to maintain his own heart rather than get into all the dangerous side effects of transplant meds? Matthew has congestive heart failure due to him being on hemodialysis at such a young age, but we are VERY fortunate that his heart regained a LOT of his prior function back after transplant when his blood pressure went back to near normal levels.
I hate the "waiting til they are sick enough" wait! I am SO happy and just in awe of how far my son has come (I'm positive you can relate!!) but hate that one day, we'll do this all over again you know. Enjoying our "normal" while waiting for the other shoe to drop...you never really let go of that fear or worry. But on the other hand, it makes you that much more thankful for all that you do have - all that our sons can accomplish because they were able to be helped.
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Karen (the momma) Ian (the daddy) William - 8 (the Cars boy) Matthew - 6 (the all out Disney NUT)

Trick or Treat Trip Oct 11-16th 2014
Shades of Green :

Our MAW PTR
To Kidney - and Beyond!

Our kidney-versary trip - celebrating one year anniversary of kidney transplant!
kidney-versary trip 2011

Kidney-versary trip 2011
MAW trip Feb 17 - 23 2013
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Old 07-21-2012, 10:43 AM   #20
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I am just now getting around to catching up on all of the pre-trip reports!

I love the birthday party pics! Looks like the kids had a BLAST!!

You guys will just LOVE Star Wars Weekend!!
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Old 07-21-2012, 11:14 AM   #21
Lilfoot93
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Quote:
Originally Posted by carebearkidney View Post
Have they talked about heart transplant, or is it better to maintain his own heart rather than get into all the dangerous side effects of transplant meds? Matthew has congestive heart failure due to him being on hemodialysis at such a young age, but we are VERY fortunate that his heart regained a LOT of his prior function back after transplant when his blood pressure went back to near normal levels.
I hate the "waiting til they are sick enough" wait! I am SO happy and just in awe of how far my son has come (I'm positive you can relate!!) but hate that one day, we'll do this all over again you know. Enjoying our "normal" while waiting for the other shoe to drop...you never really let go of that fear or worry. But on the other hand, it makes you that much more thankful for all that you do have - all that our sons can accomplish because they were able to be helped.
When he was first born they said heart transplant would be a last resort. They haven't talked about it recently. I am glad to hear that Matthew did not need one.

I too, hate the "waiting til they are sick enough" wait! That is where we are at right now. It is so hard! He could need his valve replacement next year, which I am scared of because his trip will be in May of next year, or it could be 3-4 years away. Of course with Trevor just turning 7 he is more on the excitement end of having another surgery. I mean how can you go wrong having mommy and daddy's full attention, movies, ice cream, the nurses bringing you whatever you want! I hope he keeps this attitude for awhile!

I do agree that we are much more thankful for what we have because of all we and our kiddos have gone through.




Quote:
Originally Posted by maroo View Post
I am just now getting around to catching up on all of the pre-trip reports!

I love the birthday party pics! Looks like the kids had a BLAST!!

You guys will just LOVE Star Wars Weekend!!
Thanks! The kids are still talking about it! Now what to do with my girls... They want a rainbow Star Wars party but they will be turning 4 in a few weeks and we are not going all out like we did with Trev's. We are going to have it more at a 4 year old level

Looking online Star Wars Weekend looks like it will be a blast! My only concern is the heat as it does not get that hot here. I can't wait until they post what will be happening next year at Star Wars Weekend so we can start planning that what Trev wants to do. Right now he says he wants to do it all... This shall be interesting
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Old 07-21-2012, 11:23 AM   #22
carebearkidney
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Hmmm...four year old (x2) girl Star Wars party...that's is a tall order!
Maybe you could go with Ewoks? Or planets and stars? Or even a princess theme, but everyone will wear honeybuns instead of crowns.

I'm such a Star Wars geek and I'm just LOVING that your trip is all about Star Wars!
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Karen (the momma) Ian (the daddy) William - 8 (the Cars boy) Matthew - 6 (the all out Disney NUT)

Trick or Treat Trip Oct 11-16th 2014
Shades of Green :

Our MAW PTR
To Kidney - and Beyond!

Our kidney-versary trip - celebrating one year anniversary of kidney transplant!
kidney-versary trip 2011

Kidney-versary trip 2011
MAW trip Feb 17 - 23 2013
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Old 07-22-2012, 11:27 PM   #23
Lilfoot93
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Quote:
Originally Posted by carebearkidney View Post
Hmmm...four year old (x2) girl Star Wars party...that's is a tall order!
Maybe you could go with Ewoks? Or planets and stars? Or even a princess theme, but everyone will wear honeybuns instead of crowns.

I'm such a Star Wars geek and I'm just LOVING that your trip is all about Star Wars!
So far we are going to make some Star Wars cookies and some rainbow cookies to make ice cream sandwiches and have a rainbow pinata and a death star pinata. Not sure what else after that : I really need to start planning though as there birthday is approaching fast

I think my husband is just as excited for Trevor's wish to be revolved around Star Wars Weekends too! You should listen to the two of them talk! I am slowly learning about Star Wars. Especially since all 3 kids love it too.



For those of you who have been to Star Wars Weekend is it something that can be done in a day? or more? I have never been to Star Wars Weekend let alone to Disney World so this is all new to me!

Jackie
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Old 07-23-2012, 10:27 PM   #24
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Quote:
Originally Posted by Lilfoot93 View Post
For those of you who have been to Star Wars Weekend is it something that can be done in a day? or more? I have never been to Star Wars Weekend let alone to Disney World so this is all new to me!

Jackie
Yes, completely doable in one day! Make sure you do make time for the parade - as everyone will see lots of characters they normally won't have out any other time - Luke, Leia, Anakin, Padme, Vader...the whole happy dysfunctional Skywalker family.
Also, get there about 20 minutes before HS opens the day you are going -they have a little "performance" by the stormtroopers to open the gates. Since I've seen it once, I wouldn't be bothered to see it again, but I think the kids will love it and it will make things more real for them.
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Karen (the momma) Ian (the daddy) William - 8 (the Cars boy) Matthew - 6 (the all out Disney NUT)

Trick or Treat Trip Oct 11-16th 2014
Shades of Green :

Our MAW PTR
To Kidney - and Beyond!

Our kidney-versary trip - celebrating one year anniversary of kidney transplant!
kidney-versary trip 2011

Kidney-versary trip 2011
MAW trip Feb 17 - 23 2013
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Old 07-25-2012, 11:54 AM   #25
Lilfoot93
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Quote:
Originally Posted by carebearkidney View Post
Yes, completely doable in one day! Make sure you do make time for the parade - as everyone will see lots of characters they normally won't have out any other time - Luke, Leia, Anakin, Padme, Vader...the whole happy dysfunctional Skywalker family.
Also, get there about 20 minutes before HS opens the day you are going -they have a little "performance" by the stormtroopers to open the gates. Since I've seen it once, I wouldn't be bothered to see it again, but I think the kids will love it and it will make things more real for them.

Thanks for the advice! He is getting even more excited about going next year now that he just had a Star Wars birthday and now he is currently at Star Wars acting camp!

Jackie
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Old 08-04-2012, 12:15 AM   #26
Lilfoot93
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We went to the Seafair events today with Make A Wish. It was AMAZING! We toured the hydro pits, met the drivers and got pictures and autographs, and watched the blue angels. They really spoiled the wish kids too! We needed an extra bag just to put all the goodies! The kids had a blast and want to go back again.

The drivers were excited to meet the wish kids. I got a little emotional when they were talking with Trev and asking what he has gone through. Of course he excitingly told them about his surgeries

One of the Make A Wish staff asked Trev his name he told her and immediately she said "oh! You are the Star Wars Weekend Trevor!" his eyes lit up and he was talking about his wish with her. He was very excited she knew who he was

Jackie
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Old 08-04-2012, 06:25 PM   #27
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Hi jackie! Ohh! What a great Wish! I just got caught up on your thread here (I'm learning all the lingo, PTR I guess I should say. You have such a beautiful family!!! How cute you have twin girls!!! I bet your son is a wonderful big brother to them, he's such a brave, handsome little warrior!!! I'm so happy he is going to have this opportunity!!! So funny, I just saw the "Noodle Sabers" on Pinterest today and thought WOW!!!! What a cool idea and pinned that right away..LOL What a cool party!!!

Seafair sounds awesome!!!! So glad ya'll were invited to go do that!
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Old 08-04-2012, 08:14 PM   #28
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Sounds like your Trevor is a tough little cookie! I'm so glad he was granted a wish
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Old 08-05-2012, 12:02 AM   #29
Lilfoot93
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Quote:
Originally Posted by texastwinmom View Post
Hi jackie! Ohh! What a great Wish! I just got caught up on your thread here (I'm learning all the lingo, PTR I guess I should say. You have such a beautiful family!!! How cute you have twin girls!!! I bet your son is a wonderful big brother to them, he's such a brave, handsome little warrior!!! I'm so happy he is going to have this opportunity!!! So funny, I just saw the "Noodle Sabers" on Pinterest today and thought WOW!!!! What a cool idea and pinned that right away..LOL What a cool party!!!

Seafair sounds awesome!!!! So glad ya'll were invited to go do that!
Trev is a great big brother! The Star Wars party was a lot of fun to plan!

Quote:
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Sounds like your Trevor is a tough little cookie! I'm so glad he was granted a wish
Thanks. He is our little rock star!

Jackie
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Old 08-06-2012, 05:56 PM   #30
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More pics

Here are some more pics of Trev before his last heart surgery. He was a month shy of his 5th birthday here.




The best part of any hospital stay is the popsicles and movies!




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