September 6-12 is a great time to go to GKTW Eva Paige's Wish Take 2

[ellenbenny]

Just joining in on your PTR. You have a beautiful family and yeah! for dates!! I am so sorry to hear of your sister's passing, and how difficult it must be for you to find out now, and that you lived so close!

I live in Rochester, and we got a bit of snow yesterday too. I had to look up Afton on a map as I hadn't heard of it.

 

[angeque143]

Thank you!!

Afton is off of Route 17 about a 1/2 east of Binghamton.....I grew up and lived on Long Island until this past August when I moved here.

 

[angeque143]

I forgot to add....GRANDMA AND GRANDPA CAN COME!!!!!

Or as Eva likes to call them MEMA and Gampa.....

 

[Blyssfull]

Your children are so beautiful! What an inspiring story you have, especially being a single parent.

Can't wait to read more about your planning and your trip.

 

[angeque143]

Your children are so beautiful! What an inspiring story you have, especially being a single parent.

Can't wait to read more about your planning and your trip.

Thanks so much!! This is all so very exciting!! There is NOW way we would ever have been able to do this with out GKTW and MAW!! I cant wait till we are back and I can help others have this opportunity!! DS already wants to do something!!

 

[tinytreasures]

MOther nature played a cruel joke on us and pounded us with 8 inches of snow....This a day before yet another cancelled ortho appt!! I so want to get Evas legs looked at before Disney...She has leg length descrepancy and I was hoping that the doctor could do something to make her walking a bit steadier prior to going....

Also please say a prayer for me...I received devastating news about my biological sister ....Short story I was adopted at 6 (long story about that in and out of foster care since birth abused in one) but there was a sister born a year 1/2 after me placed in foster care at birth due to severe CP...Just found that she died in 1995 not 10 miles from where I lived nearly all my life....She was only 23...I never thought this news would hurt so much...maybe it is because I have always been an LPN a to special needs kids focusing on CP (SMALL WORLD!!)

hugs for the lost of your bio-sister

 

[brookerene]

Yay for all of the good news, but I am sorry that your sis died its awful to know she was so close and you never knew it...but at least you got to learn a little about her....Can't wait ot hear more!

 

[angeque143]

So we just scheduled the Wish Party it is NOT until April 30!!! I have to keep this from DS until then!!! Eva is easy because she is kind of unaware of things and she cant SNOOP!!!! WOW!!! This is so crazy!!

I have tried to plan ahead for what we want to do.....


Anything with the dot is an event at Give Kids The World (where we are staying)



Wednesday 5/11

Arrive at GKTW

Walmart

Orientation

Thursday 5/12 Sea World

Disney Character Photos in Julie’s Safari Theatre from 8 a.m. to 8:30 a.m. and 9:30 a.m. to 10 a.m. (before going to Seaworld)

Sting Ray Lagoon

Dolphin Cove

Shark Encounter

Back to GKTW in afternoon

•Winter Wonderland from 6:30 p.m. to 8:30 p.m. on the Avenue of Angels and the Castle of Miracles
•Carriage Rides from 6:30 p.m. to 8:45 p.m.
•Winter Wonderland Parade at 7:45 p.m. on the Avenue of Angels
•Santa Claus in Julie’s Safari Theatre from 6:30 p.m. to 8:30 p.m.

Friday 5/13 Universal Studios
•Universal Orlando Character Photos from 8:30 a.m. to 9:15 a.m. in the Castle of Miracles
•Pirates and Princesses Party with Shamu and friends from 7:30 p.m. to 8:30 p.m. on the Avenue of Angels




Sat 5/14 Disney World

•Horseback Riding from 8 a.m. to 11 a.m. at Keaton’s Korral
•LATE NIGHT AT DISNEY STAYING FOR FIRE WORKS @ 9pm




Sun 5/15 Hollywood Studios



12:25 LUNCH Hollywood and Vine Hollywood Studios

•The World’s Largest Candy Land game from 7:30 p.m. to 8:30 p.m. at Matthew’s Boundless Playground.
•Twinkle Hope’s Tea Party from 2 p.m. to 3 p.m. in the Castle of Miracles.
Monday 5/16 Animal Kingdom

•Disney Character Photos at Julie’s Safari Theatre from 8 a.m. to 8:30 a.m. and 9:30 a.m. to 10 a.m.
•Kids’ Night Out/Grown-ups’ Night Off from 5:45 p.m. to 9 p.m. at Amberville Train Station
•Discovery Cove Animal Exploration from 6:45 p.m. to 7:30 p.m. on the Avenue of Angels


Tuesday 5/17



•Nickelodeon Character Photos in the Castle of Miracles from 8:30 a.m. to 9:15 a.m.
Check out by 11 am

 

[kjpotter]

Small World.... MY FIL lives in Chenango Forks, NY. I think it's about 30 minutes from you.

 

[angeque143]

Small World.... MY FIL lives in Chenango Forks, NY. I think it's about 30 minutes from you.

That it is!!!

 

[hurleysweety]

Just found your TR and I'm so excited that you get to go to GKTW! DH and I are volunteering there on May 9 (so we'll miss you there, but we'll be in WDW still), but I just love hearing about families that get to go and experience such a wonderful place!

I think its great that grandma and grandpa get to come too. What a special experience for the whole family, especially little Eva. And I hope you're able to keep it a surprise from AJ!

Plans look great. Horseback riding at Disney sounds like so much fun! What a special opportunity!

 

[angeque143]

Just found your TR and I'm so excited that you get to go to GKTW! DH and I are volunteering there on May 9 (so we'll miss you there, but we'll be in WDW still), but I just love hearing about families that get to go and experience such a wonderful place!

I think its great that grandma and grandpa get to come too. What a special experience for the whole family, especially little Eva. And I hope you're able to keep it a surprise from AJ!

Plans look great. Horseback riding at Disney sounds like so much fun! What a special opportunity!

Thanks so much!! I am so excited to have the opportunity to go!

 

[Mom2Miracles]

I'm a little late to the party it seems, I haven't been around much the last few days. Regardless, welcome to DIS!! Congrats on Eva's trip, and what great news that your parents get to tag along for all the fun.

 

[angeque143]

I just got a phone call from my Aunt who sews with a talented group of ladies...They are going to make Eva a couple of bibs in the Disney theme (I think she said 2 Minnie mouse prints and 2 princess prints!)!!! I am so excited!!

As you can see all of her bibs are handmade. Eva cannot get these bibs off. She tries to but cannot!! This saves her clothing!! We went through every type that I could get my hands on and these dont realease the snap as easily for her so she gives up trying!

I will have to post pictures when they come!!

 

[mom2pixies]

Just tuning in! Congrats on getting dates and for Grandma and Grandpa to join you guys on Eva's special trip!

 

[angeque143]

Today was a hard day here. Mommy (me) is a control freak and a planner. I am learning to let go and put this in someone elses hands...Please tell me that I am not the only one who has a hard time with this!!!

Eva has been running a low grade fever and other than being a bit tired she seems fine....Now I get nervous because we have had a very uneventful winter other than major GI issues we have gotten off easily...I keep waiting for something.

I saw in the other PTR the back pack that she will need for her pump and my insurance DOES NOT cover it!!!

I need to know what the cheapest way is to ship Eva's pediasure down is I cant buy it at Walmert like MAW told me to do she is on the higher calorie count with added fiber....Also if I ship it will GKTW hold it there for me? I am thinking that the cheapest way for me to do this is to put it into the flat rate priority boxes......

I guess we will figure it out!!

 

[Blyssfull]

Today was a hard day here. Mommy (me) is a control freak and a planner. I am learning to let go and put this in someone elses hands...Please tell me that I am not the only one who has a hard time with this!!!

Eva has been running a low grade fever and other than being a bit tired she seems fine....Now I get nervous because we have had a very uneventful winter other than major GI issues we have gotten off easily...I keep waiting for something.

I saw in the other PTR the back pack that she will need for her pump and my insurance DOES NOT cover it!!!

I need to know what the cheapest way is to ship Eva's pediasure down is I cant buy it at Walmert like MAW told me to do she is on the higher calorie count with added fiber....Also if I ship it will GKTW hold it there for me? I am thinking that the cheapest way for me to do this is to put it into the flat rate priority boxes......

I guess we will figure it out!!

I'm a planning control freak too. You're not alone. I've had to learn the hard way with two kids I gotta go with the flow and I can't get everything done in one trip like I used to.

Insurance makes me so angry. I did medical insurance coding and billing before I got to be a stay at home mama and it amazes me what they decide to be "necessary". There's probably a way to get it paid for it just might take some letters from her doctors and some pestering by you. G'luck with that.. I'll be glad to help if I can.

 

[angeque143]

I'm a planning control freak too. You're not alone. I've had to learn the hard way with two kids I gotta go with the flow and I can't get everything done in one trip like I used to.

Insurance makes me so angry. I did medical insurance coding and billing before I got to be a stay at home mama and it amazes me what they decide to be "necessary". There's probably a way to get it paid for it just might take some letters from her doctors and some pestering by you. G'luck with that.. I'll be glad to help if I can.

That is so sweet!! Unfortunately we are not dealing with private insurance anymore We have state assistance for her, thay are cutting back like mad. I am going to see if her Care at home program can pull a few strings.

 

[blessedmom4]

Today was a hard day here. Mommy (me) is a control freak and a planner. I am learning to let go and put this in someone elses hands...Please tell me that I am not the only one who has a hard time with this!!!

Eva has been running a low grade fever and other than being a bit tired she seems fine....Now I get nervous because we have had a very uneventful winter other than major GI issues we have gotten off easily...I keep waiting for something.

I saw in the other PTR the back pack that she will need for her pump and my insurance DOES NOT cover it!!!

I need to know what the cheapest way is to ship Eva's pediasure down is I cant buy it at Walmert like MAW told me to do she is on the higher calorie count with added fiber....Also if I ship it will GKTW hold it there for me? I am thinking that the cheapest way for me to do this is to put it into the flat rate priority boxes......

I guess we will figure it out!!

Hugs for your hard day. I don't have a lot of advice for you. Have you told MAW that it is NOT available at Walmart? Would that make a difference in them helping you? I DO know GKTW will hold packages for you.

 

[angeque143]

WE spent the day celebrating Anthony's birthday after going to get Eva's glasses fixed...The frame broke!! I waaas in a panic BUT they were covered under warrantee!! So we were able to pick out a NEW pair since her old frames were d/c'ed!!! We picked out ones that were NOT metal since that is the part she kept bending!! They are ADORABLE!! We should have them in a week. From there we went to the doctor because she felt warm and was so so irritable...other than a temp of 99 and a bit of nasal congestion the Dr said she was fine

We then had Anthonys party at a bouncy place unfortunately due to people not replying what should have been a bigger party only turned out to be 4 boys...They had a BLAST though!!! So did Eva...she loved the trampoline and her older sister was able to get her to do somersaults on her own.....by saying stand up...touch the ground...head in ...and roll...She sings it to Eva and Eva follows direction!!!

The child AMAZES ME!!! Eva did NOT like the bouncy maze (lots of air blasting in her face) one more thing to add to my notes of things that set her off.

Great day in all though!! Has anyone heard the song Gods Will by Martia Mc Bride? I heard it last night and just bawled my eyes out...I so thought of all of our brave children and all that they go through. What brave amazing angels we have been gifted with!!