Grace's Make A Wish: Disneyworld!

[Azheartmom]

Hi everyone! Super excited to meet all of you and soak up as much information, reccomendations, and tips about having the best MAW trip ever!

Before we get started... Meet Grace!

Grace was born December 1st, 2008, 10 weeks premature, seemingly healthy despite her early unexpected arrival. 12 hours later, Grace was life-flighted to a local children’s hospital with a suspected heart defect. Overnight, Grace developed a very loud murmur and began to turn blue- she wasn’t able to keep her oxygen levels within a safe range. The L&D department didn’t explain much, only that there may be a minor heart issue, and not to worry.
Famous last words… Hours later Grace was diagnosed with Tetralogy of Fallot (TOF) with Pulmonary Atresia and Ventricular Septal Defect (VSD) complicated by Major aortopulmonary collateral arteries (MAPCAS). Unfortunatley, because of her premature status, Grace was too small to survive the necessary corrective surgery. After battling preemie issues, including Necrotizing enterocolitis (NEC), Grace became stable enough for her first open heart surgery at 1 month old. 6 months later, Grace had her 2nd open heart surgery- this procedure being fraught with far more complications than ever before. Thankfully, Grace is a happy, seemingly healthy, energetic, sweet 3 year old today.

Grace met with her Wish Granter’s yesterday, and wished for Tangled (her favorite), Mickey Mouse, and the beach. We’re super excited to start the planning phase of our Disneyworld MAW trip! Grace is currently being evaluated for her next open heart surgery (to take place @ Stanford University), so that will help us coordinate dates for our upcoming trip.

Meet Gavin!

Gavin is our wild boy- he definitely keeps us on our toes! Gavin was born in January 2010, a seemingly healthy 6+ pound baby boy. Gavin has had rough beginnings- a Cerebral Palsy diagnosis, chronic ear infections (tubes), Sensory Processing Issues, and Eosinophilic Esophagitis. Gavin is a “Choo-Choo” fanatic and loves all things Cars & Toy Story. Gavin and Grace are partners in crime and often team up to make me and my DH nuts.

Meet Felix & Anneke!

Felix and I have been calling the greater Phoenix area home for the past six years, after living in Northern California. After struggling with infertility for 8+ years (unexplained male infertility and PCOS), we adopted our tiny miracles. Felix works from home as a claims adjuster and I am a stay-at-home mom. Felix is a true outdoorsman- hiking, fishing, camping, you name it! Having grown up in Jackson Hole, Wyoming is probably to blame. Opposites must attract. I prefer to stay indoors- reading, shopping, surfin' the net, listening to music. My hobbies probably stem from growing up outside San Francisco. Together, we love to travel, spoil our kids, and spend time improving our home.

Our family makes frequent trips to Disneyland, but we’ve never been to Florida, or to Disneyworld- any and all tips are more than welcome!

 

[Moodyzblu]

Hi from another "heart" mom ! My son, Jayden, also has Tetralogy of Fallot and has been through a LOT. He had open heart surgery at 12 weeks old and well you know the countless other procedures these kids go through trying to maintain their hearts and health. But they are truly fighters !

So happy for your family to be able to go to WDW !! You all are going to have a fantastic time.

We are still waiting to meet with the wish granters but hope to go to GKTW. Jayden is a BIG Harry Potter fan and wants to visit Harry Potter world as well as Magic Kingdom.

 

[Azheartmom]

Hi from another "heart" mom ! My son, Jayden, also has Tetralogy of Fallot and has been through a LOT. He had open heart surgery at 12 weeks old and well you know the countless other procedures these kids go through trying to maintain their hearts and health. But they are truly fighters !

So happy for your family to be able to go to WDW !! You all are going to have a fantastic time.

We are still waiting to meet with the wish granters but hope to go to GKTW. Jayden is a BIG Harry Potter fan and wants to visit Harry Potter world as well as Magic Kingdom.

So nice to meet you! I'm assuming you do surgeries @ Boston Children's?

How exciting about the upcoming wish. The waiting is definitely the hardest part. I wonder at times if we're doing this too soon age-wise, but with another OHS on the horizon, I want to make an amazing memory while we are all seemingly healthy.

I love Harry potter too! I'm definitely putting hogwarts on my must see list, as well as a butter beer.

 

[Moodyzblu]

Yes .. Boston Children's is our "home" away from home ! But I feel so fortunate to be just an hour away from them. Everything is done there, even his dentist !

I think Grace is a great age to visit WDW. I can't blame you for wanting such a special trip before her surgery. Then in a few years you can always go back and re-visit.

Our wish granters will be here this Thursday .. so we are right behind you !

 

[momminnie]

Hi I am so excited to read about you trip planning. Your children are beautiful. I took my youngest son to WDW when he was 2 and 3 and He had a blast. We enjoyed doing Disney through his eyes. Hope you enjoy every minute of the planning and the trip.

 

[lorasmom]

Welcome!

You have a beautiful family

We are originally from FL, and grew up at WDW. Now that we're in SoCal, we are "stuck" with DL . You guys will LOVE Disney World! Can't wait to follow your story!

 

[katibosch]

From another adoptive mom, welcome to the boards! I've only been here a few weeks but I've already learned a ton! I hope your planning for your trip goes well and also the upcoming surgery. My prayers will be with you.

 

[Azheartmom]

.

Our wish granters will be here this Thursday .. so we are right behind you !

I can't wait to hear how it goes! We find out about the surgical plan for Grace on Thursday, so I may need the good vibes of your wish session.

 

[Azheartmom]

Hi I am so excited to read about you trip planning. Your children are beautiful. I took my youngest son to WDW when he was 2 and 3 and He had a blast. We enjoyed doing Disney through his eyes. Hope you enjoy every minute of the planning and the trip.

Thank you! How was it with him? Did you do multiple days, or did you rest in-between? my youngest has done 2 consecutive DL days, followed by a beach day. He did phenomenal, but with his SPD I worry about overdoing it.

 

[Azheartmom]

Welcome!

You have a beautiful family

We are originally from FL, and grew up at WDW. Now that we're in SoCal, we are "stuck" with DL . You guys will LOVE Disney World! Can't wait to follow your story!

Thank you! Your family is beautiful as well! Just came from Gabby's PTR

What brought you to the OC from FL?

 

[Azheartmom]

From another adoptive mom, welcome to the boards! I've only been here a few weeks but I've already learned a ton! I hope your planning for your trip goes well and also the upcoming surgery. My prayers will be with you.

Thank you for your prayers! I'll post Gace's operative status as soon as I know.

 

[Azheartmom]

I'm still trying to process the information, and I'm super emotional.

Looks like Grace's surgery will happen sooner than expected. She is NOT a candidate for the melody valve (cath procedure), and needs a conduit replacement (synthetic pulmonary artery) and heart reconstruction. The plan to rebuild her left branch pulmonary artery, and possibly cut away some of the excess muscle on the right side of her heart. Surgery will happen sometime between March and May, we'll get specific dates this coming week.

Our MAW trip will occur sometime in Jan/Feb/early March. I'm excited for the amazing memory to be made, but can't beleve I have so little time to get it all together! We plan on extending our trip. Luckily we have a timeshare, so we'll stay there for the extended portion.

DD adores Rapunzel is there a character dining option with her? What about the boutique? Any Tangled must do's?

 

[Moodyzblu]

SO sorry to hear about the surgery coming so soon. Plus NO time to plan !!
Your head must be swimming.
I know it's easy to tell you not to worry .. but I understand where you are coming from. Hang in there and have a wonderful trip with your family.

I put in for March, April or May .. but we'll have to see what happens.

I'll be thinking of you guys and praying all goes well with everything !

 

[Delaney21]

Welcome! Your children are absolutely beautiful!

My wish kid also has an Eosinophilic disorder like your little guy. Hmm...I just looked it up and we are facebook friends! Nice to see you over here too!

 

[billwendy]

Hi!!! oooh, cant wait till you get some dates!!!! I guess its so hard to plan when you dont know when you are going!!!!! If you have any questions about GKTW, let me know, I got to go there with my nephew on his MAW trip and it was AWESOME!!!!!!!!!

 

[Owensheart]

You are all going to LOVE GKTW!!!! Owen had the best time at the village and enjoyed all the fun evening activities. Put in a request for Jan or Feb if possible. You do not want to be here when it's hot. We had one or two warm days and we spent that time at the splash pad at GKTW.

We still have two days, but I'll give you any secrets or tips when we get home. SO excited for Grace (and Gavin too)!

 

[Azheartmom]

Crazy days for us! It's been a real whirlwind. Whew!

Grace is set to have surgery on Feb. 9th. We'll need to be at Stanfors for pre-op and cath beginning February 3rd. That doesn't give us much time, and I really wanted to do this trip before her next open heart surgery... So, we got dates! We will begin our wish trip January 9th, 2012!!

A mixture of sadness and excitement. Bummed I have run out of time to create cute custom Disney clothes and items, but excited, of course, to make such great memories before surgery, and to have memories on film to play during Grace's recovery.

I'm doing research and trying to gain as much insight as possible- 2 weeks comes FAST!! We made character dining reservations at a couple of places. Any other must-do's?

Thanks all!
Merry Christmas!!

 

[Moodyzblu]

Wow, thats really not much time but how exciting !!

You need a visit to the Disney Store ASAP to get some cute shirts and such .. that's what I usually do .. I like to theme the boys clothes to the park we are in .. although I'm sure I won't be getting away with THAT much longer since they are getting older .. but right now they still let me dress them the way I like.

Sorry you have to face surgery so soon .. I'll be praying that it all goes well. So far Jayden has been squeaking by the cath procedure but his one lung is functioning very poorly .. so I know it's only a matter of time.

Good luck with your planning !! Has MAW mentioned anything special in the works ?? How many days are you going to be there ?

 

[Azheartmom]

You need a visit to the Disney Store ASAP to get some cute shirts and such .. that's what I usually do .. I like to theme the boys clothes to the park we are in .. although I'm sure I won't be getting away with THAT much longer since they are getting older .. but right now they still let me dress them the way I like. :good vibes

Good luck with your planning !! Has MAW mentioned anything special in the works ?? How many days are you going to be there ?

I'm trying to theme them- I love the personalized embroidered look (iron-ons?). Do you think that if I go on Etsy that I could get them in time? Are there any disboards people that sew for the Big Give that I should look at? I'd rather share the wealth with disboards friends!

Trying to get everything we need (rain ponchos, swim suits, tennis shoes... I know I'm forgetting things!!) but also kep it to a dull roar- plane tix and hotels to San Francisco are painfully more than I expected, particularly this quickly. Thankful for amazing friends & family, though, many are trying to donate miles and air vouchers.

Nothing "special" mentioned from MAW. We'll be staying at GKTW (have I mentioned how excited we are about this?!?) Jan. 9th thru 15th, and then we are extending at our timeshare through the 22nd. I've made reservations for ds Bday (he'll be 2!!) at the T Rex experience, we're also doing O'Hana for dinner, Crystal Palace for character bfast, Tusker House for character lunch, and hopefully Chef Mickey's for another character bfast.

DD really wants to meet Rapunzel and Ariel.I don't think there are other opportunities to have lunch or anything with them, so hopefully she'll at least see them in the parks? I've been on the fence about BBB. Is she old enough to really enjoy? She just turned 3... I thought about bringing our own princess dresses, but is that really comfortable to wear around the park?

So many questions, so little time!! Lol!

Thankfully I've got all of this to delay my panic about surgery! . Thinking I'll post this in the MAW file too? That way I can get questions answered.

Counting down!!!