Ethan's Magical Make-a-Wish WDW PTR (November 11-17, 2012):

[angel's momma]

Sorry about your heel, praying you won't have any problems with it.

Technology is wonderful when it works, maddening when it doesn't.

Have a fantastic trip!

 

[carebearkidney]

Hoping your heel was cured by waking up in DISNEY WORLD this morning!!!!!
It's now - it's happening - enjoy every minute!

 

[angel's momma]

Can't wait to read about the trip

We hope your family has a wonderful Thanksgiving!

 

[blessedmom4]

Thinking of you and looking forward to hearing about all of the magic.

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[aym4Him]

Hoping your heel was cured by waking up in DISNEY WORLD this morning!!!!!
It's now - it's happening - enjoy every minute!

You know, it wasn't healed, but thanks to some molefoam padding and me not being worried that I looked like a dork with it stuck to each foot (I wore birkenstocks), I made it thru

Can't wait to read about the trip

We hope your family has a wonderful Thanksgiving!

I've unpacked most of the suitcases but I'm still "unpacking" my brain- I hope to be able to post a report soon. E's birthday is 12/3 and it kind of snuck up on us- trying to figure out if we want to have a small family gathering here at the house or not. Of course, it's Thanksgiving now and WOW!

We had an amazing time!! AMAZING! E is a roller coaster junkie (Rode Goofy's Barnstormer 12 times in a row one night)!

Thinking of you and looking forward to hearing about all of the magic.

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Thank you and HAPPY THANKSGIVING to you all!! We have loads to be thankful for!!! (Plus, our lil buddy David is still with us to celebrate!)

Ok. Back to watching the Macy's parade with my boy. HUGS to you all!

 

[angel's momma]

You know, it wasn't healed, but thanks to some molefoam padding and me not being worried that I looked like a dork with it stuck to each foot (I wore birkenstocks), I made it thru

I've unpacked most of the suitcases but I'm still "unpacking" my brain- I hope to be able to post a report soon. E's birthday is 12/3 and it kind of snuck up on us- trying to figure out if we want to have a small family gathering here at the house or not. Of course, it's Thanksgiving now and WOW!

We had an amazing time!! AMAZING! E is a roller coaster junkie (Rode Goofy's Barnstormer 12 times in a row one night)!

Thank you and HAPPY THANKSGIVING to you all!! We have loads to be thankful for!!! (Plus, our lil buddy David is still with us to celebrate!)

Ok. Back to watching the Macy's parade with my boy. HUGS to you all!

Glad you had an amazing time. Wow - 12 times in a row! Sorry your heel was still giving you problems, but glad you made it through.

Looking forward to hearing about his birthday.

So glad David was able to celebrate. :hugs:

Hope you enjoyed the parade. We taped it, and still need to watch it.

 

[angel's momma]

 

[blessedmom4]

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[angel's momma]

 

[MonsterWDWmom]

Not sure if you check this anymore but I came across this and thought I would just say hi and hope all is well from another "heart" family. My daughter (5) was born with Truncus Arteriosus and so far has had 1 repair and 2 caths we are looking at her next repair to be anytime from 1 to 4 years . I hope your son is doing good and you had a great trip!

 

[aym4Him]

Not sure if you check this anymore but I came across this and thought I would just say hi and hope all is well from another "heart" family. My daughter (5) was born with Truncus Arteriosus and so far has had 1 repair and 2 caths we are looking at her next repair to be anytime from 1 to 4 years . I hope your son is doing good and you had a great trip!

Hi!!!

Thanks for saying hello!

We are well. E's last checkup showed his pressures on the right side had increased some but we are still on annual visits, so that's good. It still worries us that it was up (from 14 to 31) but his dr reassured us that he wasn't worried. What he didn't tell us til later is that he's moving at the end of this month. Waaaah!! He has been our one-and-only since E was diagnosed at 5 days old. It's going to be very hard to say goodbye.

Hoping surgery is way way way out on the horizon for you!

We are actually surprising Ethan with a return trip to WDW on 11/11!! We never dreamed we would be back so soon but Disney fever hit us hard!! In the meantime, we are counting our pennies.

 

[MonsterWDWmom]

Hi!!!

Thanks for saying hello!

We are well. E's last checkup showed his pressures on the right side had increased some but we are still on annual visits, so that's good. It still worries us that it was up (from 14 to 31) but his dr reassured us that he wasn't worried. What he didn't tell us til later is that he's moving at the end of this month. Waaaah!! He has been our one-and-only since E was diagnosed at 5 days old. It's going to be very hard to say goodbye.

Hoping surgery is way way way out on the horizon for you!

We are actually surprising Ethan with a return trip to WDW on 11/11!! We never dreamed we would be back so soon but Disney fever hit us hard!! In the meantime, we are counting our pennies.

Sorry to hear about the rising pressures. Faith (my daughter) has the same problem with her branch arteries last summer we went to children's (Boston) and she had a cath done they were able to get the flow to the left lung from 22% to 33% , we found the problem was not necessarily her arteries but her pulmonary vein that grew under her heart instead of around (so the heart is compressing the vein).

That is too bad about your doctor, but luckily there is a growing field of doctors who are specializing in CHD's.

A surprise trip is awesome, I know what you mean by Disney fever I have it right now ! I hope you have a great trip.

By the way I showed Faith a picture that you have of Ethan on here where you can see his scar and it made her night. She loved knowing another kid has a "zipper" just like her

 

[aym4Him]

I'm so glad she got a kick out of seeing Ethan's picture and that it made her feel good to know she's not alone. He really hasn't mentioned much about how his chest is different from most of his friends. His sister by heart (they were NICU neighbors), on the other hand, has been asking lots of questions. We are very involved with our heart kids support group so maybe that helps E not think about it too much. Then again, he's a boy & too busy to think about most things other than ice cream & Star Wars!!!

Our relationship with E's cardiologist is pretty rare, I think. I'm afraid it won't be close to the same when we get a new dr. We're having the going-away party this Sunday and then dinner with him, his family & a couple of his other patients & their families next week.