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Old 05-04-2012, 01:30 PM   #1
aym4Him
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Ethan's Magical Make-a-Wish WDW PTR (November 11-17, 2012):

Hi, everyone.

My son, Ethan, has been granted a wish and we are heading to Disney World! This will be his first time and my hubby's first (his parents are joining us on their own dime- it will be their first time, too). I have been 3 times, but the last time was in 1993. It's been a while! We just got our dates and we will be there Nov 10-16th.

I'm very thankful to find you guys and all this information! I am feeling quite overwhelmed, though. I am not a planner by nature (much to my husband's chagrin) but am more of a fly-by-the-seat-of-my-pants-and-see-what's-gonna happen kind of girl.

A little about us. We are a family of 3 (4, counting our "firstborn" son, our Mini Schnauzer, Giggs). I'm Amy and I'm married to Dillon and Ethan is our little super hero. He's 3 and has had two open heart surgeries (with at least one more to go). At 5 days old, he was diagnosed with Transposition of the Great Arteries and a Ventricular Septal Defect. He had his first OHS at 9 days old to put his arteries (arterial switch) back where they were supposed to go and to have the hole in his heart patched- thankfully, the operation went very smoothly. He had some hiccups in recovery (collapsed lung, feeding issues, etc) but was able to come home after a month.

During one of his routine followup visits with his cardiologist, an issue was discovered about a month and a half after he was discharged. In 5% of cases, scar tissue can develop from all the suturing required to re-attach his arteries to (what should have been) their native valves on the proper ventricles. He was one of the "lucky" 5% and had developed narrowing in his pulmonary artery and valve due to this. After an unsuccessful heart cath to try and widen things up, he underwent his 2nd OHS at 4 months old. It was successful but he will need his pulmonary valve replaced at some time in the future b/c he will outgrow the one he was born with due to the synthetic patch used to widen it.

For all intents and purposes, he is a typical 3 year old boy. In fact, he has given us his first non-heart emergency issue just this week! He swallowed a ball bearing (the size of a small marble) and was pretty proud to show off the xray to his teachers and friends at school and church. It successfully exited his system within a 24 hour period, so we are thankful.

Anyway, that's our story. Ethan has his annual cardiology check up on May 15th so prayers that all is well are appreciated! I'm so paranoid that something will go awry now that we have our dates for Disney! (Because, that's just how us Durhams roll!!!)

You can read more about Ethan here

What should I be doing now, other than feeling giddy and a bit overwhelmed? Hehe. We definitely will be buying MVMCP tickets for all of us. How soon do we need to do that? What about ADRs?

Thank you thank you thank you!!

Last edited by aym4Him; 09-10-2012 at 03:05 PM. Reason: edited title to update travel dates
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Old 05-04-2012, 03:49 PM   #2
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I will be praying all goes well on the 15th!!

Alot has changed since 1993!!

What should you be doing now...start planning and enjoy the planning process!!

I'd also suggest buying or renting the Disney Sing-A-Long dvd's. There is one for Animal Kingdom, one for Disneyland but it's very similar to the Magic Kingdom, there is also one for the camp ground and one for the water parks. It will help with getting Ethan familiar with the characters and the music.

3 years old is such a great age for Disney!!
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Old 05-07-2012, 03:50 PM   #3
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Thank you so much!!

Haha. Ok. I'm going to do my best to start the planning process. Wow..so much to take in!!!

Thank you for the DVD suggestion. A friend of mine also suggested a book- it was something like, "Traveling to Disney with Your Toddler" or something to that end. I think I'm going to find a lot of info on these boards, though!

I really appreciate the prayers!
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Old 05-20-2012, 09:12 PM   #4
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Appointment change..

Our cardiologist's father died :-(, so Ethan's appointment was moved to May 25.

One of his "heart buddies" and his mommy and daddy were with us this week, visiting from AZ. Ethan and Owen share a similar heart defect, though Owen has an ASD instead of a VSD. Anyway, they had a great time.

I am really needing to get back on the Disney ball and plan. Will do so this week.
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Old 05-20-2012, 10:26 PM   #5
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Sorry to hear about his father. Understandable that he would put work on hold for bit. Praying all goes well on the 25th!

You are at the 180 day window. You can make your ADRs now!
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Old 05-21-2012, 08:27 PM   #6
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Quote:
Originally Posted by lovethattink View Post
Sorry to hear about his father. Understandable that he would put work on hold for bit. Praying all goes well on the 25th!

You are at the 180 day window. You can make your ADRs now!
Thank you.

Just trying to figure out what ADRs we want. Trying to keep in mind that he's 3 (will be a little less than a month away from 4 when we go) and determine what I think he'll want to do. This is a kid who gets uber-excited at going to Toys R Us just to LOOK at toys, so anything we do is going to be awesome for him. I just don't want to risk the dreaded meltdown or plan something that we might not get to enjoy due to said meltdown. I guess my next step is to see what the pricing is for the places we want to try (he barely eats so paying full-price for him would be crazy).

Any tips? We are thinking Ohana and Chef Mickey are must-dos, but I don't know about anything else.

We are either going to have to go to MVMCP on Monday night or Thursday. I just need to decide which party at GKTW to skip (either Halloween or Christmas).
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Our Family: Dillon (DH), Amy (me), and Ethan (Wish Kid Alumni)

Ethan's Magical MAW PTR (November 11-17; extending to the 20th!, 2012)

Shh! It's surprise! "Darth Ethan's Return to the Kingdom 2013" Pop Century November 11-19th
Happy Wishiversary, Ethan!
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Old 05-22-2012, 04:22 AM   #7
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To the DIS!!!


Another heart Mom here. I know what you mean about the worries and unknowns. We finally took our daughter's MAW trip this past October and it was simply AMAZING! Enjoy the planning, it goes by MUCH too quickly!
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Old 05-22-2012, 04:30 AM   #8
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Quote:
Originally Posted by aym4Him View Post
Thank you.

Just trying to figure out what ADRs we want. Trying to keep in mind that he's 3 (will be a little less than a month away from 4 when we go) and determine what I think he'll want to do. This is a kid who gets uber-excited at going to Toys R Us just to LOOK at toys, so anything we do is going to be awesome for him. I just don't want to risk the dreaded meltdown or plan something that we might not get to enjoy due to said meltdown. I guess my next step is to see what the pricing is for the places we want to try (he barely eats so paying full-price for him would be crazy).

Any tips? We are thinking Ohana and Chef Mickey are must-dos, but I don't know about anything else.

We are either going to have to go to MVMCP on Monday night or Thursday. I just need to decide which party at GKTW to skip (either Halloween or Christmas).
My 2 cents (and that is exactly what it is worth)...I would NOT over plan and I think one character meal at this age might be enough, it can be sensory overload...I would pick O'hana's over Chef Mickey because it isn't buffet and it is one less "place" you have to venture off to.

Again this is JUST ME...having done MNSSHP, as well as the Halloween party and Christmas party ay GKTW....I would personally skip the MVMCP. Those were our FAVORITE parties at GKTW! (I have them both well documented on our TR, just click on the links in the Table of Contents if you want to read about them...).
I am going to be posting our MNSSHP night soon. If we could do it over again, I would save the money!
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Old 05-23-2012, 09:51 PM   #9
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Thank you for the welcome, Judy! How is your daughter doing?

Well, we found out today that Ethan is going to need tubes in his ears. We've been dancing around it for a while. He's only had 3 infections in his life but tends to harbor fluid, apparently. He failed two hearing tests at his pediatrician's office (the most recent being yesterday) and we managed to get in to see the ENT this morning where he failed their test as well. Tubes will be placed June 20. We're having it done at the same hospital where he's had his heart surgeries b/c they will use the same anesthesia group and everyone is right there under the same roof.

I can't believe his annual cardiology check up is almost here.. Friday at 10:30. I'm ready for some good news! We hope to visit our local chapter's Wish Tower that afternoon and meet his wish manager.

Now, back to the PTR.

For our cast of characters, I shall start with the Main Man, Mr. Ethan!


This is his favorite play outfit, and it shows! It was in pretty good shape when I took this pic in the fall but it has started to unravel in the front and come apart at one of the seams on the shoulders! I don't know what we'll do when it completely falls apart! He also has a pair of beloved boots that I found at a consignment store that are too small for him and, wouldn't ya know it, Gymboree doesn't make them anymore? Hahaha..

Anyway, he has a long-running love story with Buzz and Woody. His first toys were actually some I had saved from a Burger King kid's meal back when the first movie came out . He carried those guys with him everywhere. As I type, he's supposed to be getting into his PJs for bed but he is putting on his Woody costume.

More pictures of Ethan and the rest of our cast will have to wait til later.

Have a great night, everyone!

Amy
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Our Family: Dillon (DH), Amy (me), and Ethan (Wish Kid Alumni)

Ethan's Magical MAW PTR (November 11-17; extending to the 20th!, 2012)

Shh! It's surprise! "Darth Ethan's Return to the Kingdom 2013" Pop Century November 11-19th
Happy Wishiversary, Ethan!
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Old 05-25-2012, 04:54 PM   #10
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Woo-hoo!!

We had some GREAT news today! Ethan's heart looks perfect (for a heart like Ethan's) and we don't have to go back for another year !! I don't dance, but I think I could bust a groove like Mr. Banana up there- I think the last time I felt this relieved and happy was during his first open-heart surgery when the surgeon called and said his coronary arteries were long enough to make the arterial switch!! Well, then and afterwards when Dr. M (his surgeon) and Nurse Kathy came out with smiles and hugs all around!! I didn't realize just how much anxiety and stress I was harboring over this until after his appointment- and, I'd be pinching myself if Ethan's cardiologist hadn't done the echocardiogram himself. It was so good to have him point out exactly what he was looking at. Even though there is still some regurgitation around his pulmonary valve, it's not enough to affect his heart function. The right side of his heart is stable and hasn't gotten any larger that it looked after he had his 2nd surgery (at 4 mos old to relieve the pulmonary stenosis/narrowing around the artery and valve). This means his valve replacement surgery is so far into the future that he could be a young adult before he needs another! He even used the words "if ever." He has never said that before!! He mentioned knowing of some adults in their 30's with pulmonary leakage that are doing all right but, we know every heart is unique (we also found out that Ethan is the only patient he's ever had who has needed a 2nd surgery for scar tissue build up (what caused the narrowing in his pulmonary artery/valve). That's our boy- there was only a 5% chance it would happen, and it did. We are just going to live in peace for another year (until about a month out from his next appointment, which is when my stress level starts bugging out!) and enjoy life!

For those few people who are following this thread and have prayed for us, THANK YOU!! You rock!

In celebration, and since Dad had the day off, we paid a visit to the Wishing Place (our MAW chapter's HQ) today. We met E's wish manager and hung out with one of his wish granting volunteers. He had a great time. They are gearing up to celebrate their 7,000th wish tomorrow! That's pretty amazing! Anyway, we found out that the flights for our trip probably won't be booked until September, so I guess we're kind of in limbo regarding whether or not we'll want to extend the trip (either go down early or come back later) a few days. It's all good, though. I know Ethan will adore GKTW so whatever else we do will be a cherry on top! 5 days to fit in all that fun is just too crazy to plan, anyway!

I'm thinking, after being sooo geared up for it before, we may be skipping MVMCP. Even if we added days to the end of our trip, the only other party is the 16th which is a Fri and I heard those parties can be pretty crowded.

Hollywood Studios sounds pretty fun- and has a lot that I think Ethan will love, especially all the Pixar-related stuff. I just need E to grow about 4" by November so he can go on Star Tours with us! Can someone make some magic happen?

I'm trying to get a feel for whether or not I want to do any character dinner reservations. When E does eat, he doesn't eat a lot and I'm wondering if he's going to be so freaked out by the giant cartoon characters he won't eat . Then again, it could be the dinner/breakfast of his life! LOL. I can't get a straight answer out of him over what his fav character is, at the moment. I would normally say Buzz or Woody but I think he's crushin' on Minnie Mouse at the moment! I know better than to ask who he would want to eat with (b/c eating means having to stop playing around, etc) so I tried asking him who he wanted to give the biggest high 5 to, etc. One minute, it was Minnie, followed by the whole Mickey Mouse Clubhouse Posse (including Pete and Clarabell!). The next, it's the Toy Story crew. Throw in Sully and Mike and you have one confused kid- too many to sort thru!

I'm so excited for our trip and so excited about his appointment. I just wasn't sure what to expect, even though he's been acting and feeling relatively well. Even though, at his last visit, the dr said things looked great, you just almost don't let yourself believe it until you get to the next appointment when he says the same thing. Whew. I'm so so so happy! Now, we just need to get the tubes behind us so we can really focus on how much fun we're going to have at Disney!

Can y'all tell I'm excited? I tend to talk, nonstop, when I'm giddy. I'm sorry about that!!!

If y'all want, go leave us a message on E's CaringBridge page, too! Thanks!!

http://www.caringbridge.org/visit/ethankyle/journal
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Our Family: Dillon (DH), Amy (me), and Ethan (Wish Kid Alumni)

Ethan's Magical MAW PTR (November 11-17; extending to the 20th!, 2012)

Shh! It's surprise! "Darth Ethan's Return to the Kingdom 2013" Pop Century November 11-19th
Happy Wishiversary, Ethan!
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Old 05-25-2012, 05:07 PM   #11
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More pictures of our Cast of Characters

Mickey has always been a part of his journey (The day after his 1st OHS, the pediatric heart support group at the hospital had a Holiday Party. Radio Disney was part of the entertainment. They had little contests and his daddy won one of them and could choose a prize- he picked Mickey. It wasn't until after he chose it that we noticed the heart embroidered on his foot! )



This was a fun pic we took at our local Disney Store:



(is everyone seeing the pics ok? I'm posting from flickr)
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Our Family: Dillon (DH), Amy (me), and Ethan (Wish Kid Alumni)

Ethan's Magical MAW PTR (November 11-17; extending to the 20th!, 2012)

Shh! It's surprise! "Darth Ethan's Return to the Kingdom 2013" Pop Century November 11-19th
Happy Wishiversary, Ethan!
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Old 05-28-2012, 06:03 PM   #12
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Just wanted to say:





I am SO thankful to read the great cardiology news!!!
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Old 05-28-2012, 07:27 PM   #13
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Quote:
Originally Posted by aym4Him View Post
Well, we found out today that Ethan is going to need tubes in his ears. We've been dancing around it for a while. He's only had 3 infections in his life but tends to harbor fluid, apparently. He failed two hearing tests at his pediatrician's office (the most recent being yesterday) and we managed to get in to see the ENT this morning where he failed their test as well. Tubes will be placed June 20. We're having it done at the same hospital where he's had his heart surgeries b/c they will use the same anesthesia group and everyone is right there under the same roof.
I'm sorry. I hope the tubes help and will be praying all goes well and there is very little pain on the 20th and thereafter.

Quote:
Originally Posted by aym4Him View Post
Now, back to the PTR.

For our cast of characters, I shall start with the Main Man, Mr. Ethan!


This is his favorite play outfit, and it shows! It was in pretty good shape when I took this pic in the fall but it has started to unravel in the front and come apart at one of the seams on the shoulders! I don't know what we'll do when it completely falls apart! He also has a pair of beloved boots that I found at a consignment store that are too small for him and, wouldn't ya know it, Gymboree doesn't make them anymore? Hahaha..
We've had that a couple times with Gymboree costumes. Sometimes they do repeat with a different twist but it's usually years later. We had it with a certain cowboy hat and a pirate vest, that were my son's favorites, the hat did repeat so I bought the present size and a larger size for just in case.

Quote:
Originally Posted by aym4Him View Post
Anyway, he has a long-running love story with Buzz and Woody. His first toys were actually some I had saved from a Burger King kid's meal back when the first movie came out . He carried those guys with him everywhere. As I type, he's supposed to be getting into his PJs for bed but he is putting on his Woody costume.
Be sure to check out the Pixar meet and greet. We did it for the first time and it was awesome. Our experience is somewhere towards the end of my TR. It was one of the best M&G we have ever done. And it wasn't Buzz and Woody at the end that captured my son's attention, it was the queue!!

Quote:
Originally Posted by aym4Him View Post
We had some GREAT news today! Ethan's heart looks perfect (for a heart like Ethan's) and we don't have to go back for another year !! I don't dance, but I think I could bust a groove like Mr. Banana up there- I think the last time I felt this relieved and happy was during his first open-heart surgery when the surgeon called and said his coronary arteries were long enough to make the arterial switch!! Well, then and afterwards when Dr. M (his surgeon) and Nurse Kathy came out with smiles and hugs all around!! I didn't realize just how much anxiety and stress I was harboring over this until after his appointment- and, I'd be pinching myself if Ethan's cardiologist hadn't done the echocardiogram himself. It was so good to have him point out exactly what he was looking at. Even though there is still some regurgitation around his pulmonary valve, it's not enough to affect his heart function. The right side of his heart is stable and hasn't gotten any larger that it looked after he had his 2nd surgery (at 4 mos old to relieve the pulmonary stenosis/narrowing around the artery and valve). This means his valve replacement surgery is so far into the future that he could be a young adult before he needs another! He even used the words "if ever." He has never said that before!! He mentioned knowing of some adults in their 30's with pulmonary leakage that are doing all right but, we know every heart is unique (we also found out that Ethan is the only patient he's ever had who has needed a 2nd surgery for scar tissue build up (what caused the narrowing in his pulmonary artery/valve). That's our boy- there was only a 5% chance it would happen, and it did. We are just going to live in peace for another year (until about a month out from his next appointment, which is when my stress level starts bugging out!) and enjoy life!

For those few people who are following this thread and have prayed for us, THANK YOU!! You rock!

In celebration, and since Dad had the day off, we paid a visit to the Wishing Place (our MAW chapter's HQ) today. We met E's wish manager and hung out with one of his wish granting volunteers. He had a great time. They are gearing up to celebrate their 7,000th wish tomorrow! That's pretty amazing! Anyway, we found out that the flights for our trip probably won't be booked until September, so I guess we're kind of in limbo regarding whether or not we'll want to extend the trip (either go down early or come back later) a few days. It's all good, though. I know Ethan will adore GKTW so whatever else we do will be a cherry on top! 5 days to fit in all that fun is just too crazy to plan, anyway!

I'm thinking, after being sooo geared up for it before, we may be skipping MVMCP. Even if we added days to the end of our trip, the only other party is the 16th which is a Fri and I heard those parties can be pretty crowded.

Hollywood Studios sounds pretty fun- and has a lot that I think Ethan will love, especially all the Pixar-related stuff. I just need E to grow about 4" by November so he can go on Star Tours with us! Can someone make some magic happen?

I'm trying to get a feel for whether or not I want to do any character dinner reservations. When E does eat, he doesn't eat a lot and I'm wondering if he's going to be so freaked out by the giant cartoon characters he won't eat . Then again, it could be the dinner/breakfast of his life! LOL. I can't get a straight answer out of him over what his fav character is, at the moment. I would normally say Buzz or Woody but I think he's crushin' on Minnie Mouse at the moment! I know better than to ask who he would want to eat with (b/c eating means having to stop playing around, etc) so I tried asking him who he wanted to give the biggest high 5 to, etc. One minute, it was Minnie, followed by the whole Mickey Mouse Clubhouse Posse (including Pete and Clarabell!). The next, it's the Toy Story crew. Throw in Sully and Mike and you have one confused kid- too many to sort thru!

I'm so excited for our trip and so excited about his appointment. I just wasn't sure what to expect, even though he's been acting and feeling relatively well. Even though, at his last visit, the dr said things looked great, you just almost don't let yourself believe it until you get to the next appointment when he says the same thing. Whew. I'm so so so happy! Now, we just need to get the tubes behind us so we can really focus on how much fun we're going to have at Disney!

Can y'all tell I'm excited? I tend to talk, nonstop, when I'm giddy. I'm sorry about that!!!

If y'all want, go leave us a message on E's CaringBridge page, too! Thanks!!

http://www.caringbridge.org/visit/ethankyle/journal
Congrats on the great cardio report!! Wow, no return for a year!! That's awesome!!

Quote:
Originally Posted by aym4Him View Post
Mickey has always been a part of his journey (The day after his 1st OHS, the pediatric heart support group at the hospital had a Holiday Party. Radio Disney was part of the entertainment. They had little contests and his daddy won one of them and could choose a prize- he picked Mickey. It wasn't until after he chose it that we noticed the heart embroidered on his foot! )



This was a fun pic we took at our local Disney Store:



(is everyone seeing the pics ok? I'm posting from flickr)
Oh yes!! Look at the heart on the foot!! So sweet!

That's great you have a Disney Store!! So many have closed.
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Old 05-29-2012, 01:11 AM   #14
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Judy, thank you. I hope you all had a blessed Memorial Day. My husband and I had a bit of a respite as Ethan went to stay with his Grammy and Grampy Sunday night. We kind of had a lazy day and then ended it by a visit to a memorial set up (at a church) honoring those who have given so much for us. Today, we joined Amazing Little Hearts (our CHD support group) and brought some lunch to the Congenital Heart Surgery Unit for the families and staff. When Ethan had his 1st open heart surgery, we were there over Christmas and New Years and we know how much it meant to be thought of- especially with something yummier than hospital food! Anyway, it's something we can do to give back..

Tink! (Can I call you Tink?) Thank you for your prayers about E's ears and the rejoicing over his "all clear til next year" cardiology report!

I will definitely check out your TR. I tried reading through but I've been getting stuff packed for a little trip E and I are taking to visit some family. I hope to keep up with you guys while we are away. DH will be joining us later on- he has some work to do.

The Disney Store- actually, the one that pic was taken at IS closed BUT we moved about 25 miles up the road and there is another one not too far from us. The best store (in my opinion) is the Disney Outlet. It's a bit farther of a drive but it's worth it b/c it's in an outlet mall and there's other stuff to look at/do. We don't get out there very often, but happened to swing by this weekend when we were E-free (easier to look!) and picked up a few items on clearance. Woot! They had their kids' shirts for $5 but the best ones were already gone, in E's size (DH really wanted to get E an Avengers shirt). I found a couple for me (in the ladies' section, har har) but I think I'll be more comfy if a slim down a couple of pounds. Hopefully, they'll work by November! Just need to <- exercise.

I'm coming back with a continuation post of our Cast of Characters... Stand by...
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Our Family: Dillon (DH), Amy (me), and Ethan (Wish Kid Alumni)

Ethan's Magical MAW PTR (November 11-17; extending to the 20th!, 2012)

Shh! It's surprise! "Darth Ethan's Return to the Kingdom 2013" Pop Century November 11-19th
Happy Wishiversary, Ethan!
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Old 05-29-2012, 01:21 AM   #15
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Continuation of our Cast of Characters...

Here is one of our more recent pictures of the 3 of us, taken at a pumpkin patch last fall:



Here is a photo collage I did for CHD Awareness Week:



and here is a pic of Ethan with his Beads of Courage:



and a more recent shot of him in his Woody outfit (notice the fraying?):



I will confess, there are a lot of other pix I want to post but I am refraining from doing so for the greater good .

Y'all, please let me know if I'm posting them correctly. I'm only using the IMG tags and taking off the other stuff...

Have a great week!!!

Amy
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Our Family: Dillon (DH), Amy (me), and Ethan (Wish Kid Alumni)

Ethan's Magical MAW PTR (November 11-17; extending to the 20th!, 2012)

Shh! It's surprise! "Darth Ethan's Return to the Kingdom 2013" Pop Century November 11-19th
Happy Wishiversary, Ethan!
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