Wish Trip for Miss Haylee

[Haybuggsmom]

From what I have read many many do dress up and from pics I have seen lots of others do not, so my guess it would be preference ? BUt for kiddos sake I would think it would be so fun to see family join in on that Grats on being asked to be in the Big Give thats so wonderful and soo excited to watch PTR for upcoming pics !!!

Thanks!!
You must be getting excited for your trip too!! It's coming up quickly!

 

[wishin' on a star]

Hooray for the Big Give!!!

 

[kdzbear]

Congrats on the Big Give! You will love Ohana for breakfast with Lilo and Stitch. It is a lot of fun and the food is great. We had a great view of Space Mountain from our table. I can't wait to hear more about your plans!

 

[Haybuggsmom]

Hooray for the Big Give!!!

Thanks!! We are so honored and excited!!!

Congrats on the Big Give! You will love Ohana for breakfast with Lilo and Stitch. It is a lot of fun and the food is great. We had a great view of Space Mountain from our table. I can't wait to hear more about your plans!

Thanks!
We are super excited about Lilo and Ohana (which seems perfect as we are back with FAMILY- the meaning of Ohana)

 

[J'sMum]

Thanks!!
You must be getting excited for your trip too!! It's coming up quickly!

Definatly excited ! My son was saying today that he only has 2 more treatments before we have the trip Kinda neat that this trip gives him ability to make it thru the next few treatments

 

[Haybuggsmom]

So my 20 year old son almost made me wet my pants..

I was online making Haylee's Ohana Breakfast reservations and Jonathan asked me what I was up to. So when I told him he says "so my man Donald will be there right?!?"
So now I am making character breakfast reservations for my 20 year old son.

Then I started thinking...
When we took Amber for her BIG competition at Disney, 3 of the 4 days were filled with cheerleading activities so no one got to do much (adding to the excitement for this trip.. we got that little taste) When we asked him what he wanted to do on that trip he said Downtown Disney (WHAT?!?!) These were the 2 things he could not live without...

He still wears that hat everywhere!!!!
So of course Donald is "his man"!!!

 

[cajunfan]

That is too funny! Donald is my 16 year old son's favorite also! Try Tusker House for breakfast..Donald is there...

Lynn

 

[yinyanggirls]

Too funny! Love the crazy hat!

 

[Haybuggsmom]

That is too funny! Donald is my 16 year old son's favorite also! Try Tusker House for breakfast..Donald is there...

That's were he wants to go. Waiting for some thing to open up now. So maybe it's a "big guy" thing!!
Lynn

Too funny! Love the crazy hat!

He always hets great comments on his hat. I think it's funny when he wears it to Busch Gardens!!!

 

[Haybuggsmom]

I wanted to take a few minutes to tell Haylee's story. I wrote a short book about her from birth to age 3. But I though I would put it in a nutshell.

In 1993 I was diagnosed with Cervical Dysplasia. After two surgeries in a week I was fine but missing 80% of my cervex. I was young so it didn't phase me.
In 1997 I was pregnant with my Dustyn. He was born at 23 weeks due to my cervex. But they did not say that was why they just said premature labor. He passed in my arms when he was 45 min old.
In 1998 I was pregnant with Miss Haylee. When I passed the 23 week mark we were so happy. But at 24 weeks I was admitted into the hospital once again in premature labor. After a week in the hospital they told me it was my cervex issue. After 1 more week in the hospital Haylee entered my world (or should I say she started drawing everyone into hers) She weighed 1lb 11 oz. But looked huge compared to Dustyn's 1lb 2oz. She spent a VERY long 5 months in the NICU. I was blessed to have moved home to Hawaii with my parents so my mother could take care of me. So my family helped with the big kids so I could spend my days with Haylee. She went through your normal preemie stuff until her 1 month birthday. That morning they called me to come in, she was dying she has contracted sepsis. We spent 3 days solid at her bedside and finally she pulled out after about 6 weeks. After they took off all the medications to put her in a medically induced coma we noticed that she never started moving again. Turns out she has a congenital muscle disease and her non movement tured her muscles to nothing. She has never fully recovered from that. Then we worked for the next several months to get her to breathe on her own. She was having none of that. When she was 4 1/2 months old they decided to give her one try off the ventilator then the would put in a trac (that day) so we coudl start the going home process. She actually decided to breathe. She was just being stubborn.
Over the next year we were misdiagnosed with MD which she was rebiopsied 18 months later and told she had the hypotonia(floppy muscles). She spent years with only the feeding tube. Then over the years we added more things. First cortical blindness (meaning she sees when her brain lets her), Leagal deafness, tactile defensiveness, scholiosis, complete oral aversion, SEVEERE brain damage (she has almost no living brain cells) then at 8 she started the seizures. We had been told to expect them but you hope they never come. She does have grandmauls OFTEN, but we have the VNS and they have gone from 15 min to 20 seconds. THANK GOD FOR THAT DEVICE!!!!! We have told her doctors that we have enough diagnosis for now. hahaha
With all this said she is the love of my life and everyone's who she is arround. She had a smile that can melt the hardest heart. I am blessed that God gave me a front row seat to a miracle everyday of her life.
We never know what tomorrow brings with her but we all know we are TRUELY BLESSED!!
SO now that I am crying again....
LET'S DISNEY!!!!!

 

[Haybuggsmom]

Just got Haylee a white floppy hat for the trip. I'm thinking I will make changable bands to match her outfits for it!!!
Also got reservations for:
Ohana (Haylee)
1900Park Fare (Haylee/mommy)
Tusker House (Jonathan) hahaha

 

[cajunfan]

Woot for the ADRs...btw, my son also has a light saber! We also have many Donald coffee mugs...for being such a good buddie of Mickey's, he sure is hard to find sometimes.

Lynn

 

[maroo]

Aw! How cool that your son says Donald is his man!

My little brother (who is in his 30's now) still loves Chip and Dale! He now has his own little boy and wants me to bring him a Chip and Dale doll one day.

Thank you for telling Haylee's story. Wow - she was tiny!! What a crazy time you guys have had and I am so glad she got this special wish! I know she will have a great time at Disney with all of you guys!

 

[Haybuggsmom]

GKTW Question-
I know I had seen a mention of it somewhere but I can't find it again.
While my parentsw are with us on Sunday can they purchase meals? And how do we go about doing that?

 

[maroo]

GKTW Question-
I know I had seen a mention of it somewhere but I can't find it again.
While my parentsw are with us on Sunday can they purchase meals? And how do we go about doing that?

Yes! At the main check in at GKTW they will give you guys some vouchers so that they can eat. They *may* charge you a nominal fee for them - like a $1.00 per meal - but they will probably just give them to you guys if they are just eating there once.

 

[Haybuggsmom]

Yes! At the main check in at GKTW they will give you guys some vouchers so that they can eat. They *may* charge you a nominal fee for them - like a $1.00 per meal - but they will probably just give them to you guys if they are just eating there once.

Thanks so much for the info!! That's one worry marked off!

 

[Treft Family]

How exciting to be taking your family to DW!

I have a son who is in a wheelchair. We've been to DW many times and I have to say that everyone there is AMAZING!!

Is this your daughter's first time there? (sorry, I haven't read every single post)

 

[Haybuggsmom]

How exciting to be taking your family to DW!

I have a son who is in a wheelchair. We've been to DW many times and I have to say that everyone there is AMAZING!!

Is this your daughter's first time there? (sorry, I haven't read every single post)

We are so very excited!!!
We actually were there for 4 days in May. But it was for a cheerleading competition. So we only had competiton 2 days and 2 half days (one of which it stormed) We didn't do much outside of the competition and the resort. But we still had fun and we did notice how nice everyone was. We walked to the monorail (we were at the shades of green) changed to a bus to the All Star to meet my daughters team, then a third bus to WWS. You would think it would have been terrible but it was actually pleasant.

This trip we will all actually get to just have fun. I think we are more excited about Give Kids the World than anything else!!! Even the big kids can't stop talking about it.

 

[J'sMum]

Thanks for sharing your story, so sorry for your loss and so happy at the joy you have with having Haylee I am always amazed by the strength of everyone here on disboards and so honored to be able to know a bit about everyone that is willing to share My two kiddos (14 & 17) are very very excited about GKTW as well. One thing I have noticed that many of us have in common is siblings of ill kiddos tend to need that moment to just be a carefree kid as well, so many days lost at needing to be strong and grown up and time with dr's. What an amazing gift to each one of us that is blessed with the chance to go Oh shoot who am I kidding... I am just as excited as the kiddos to go there

 

[Treft Family]

One thing I have noticed that many of us have in common is siblings of ill kiddos tend to need that moment to just be a carefree kid as well, so many days lost at needing to be strong and grown up and time with dr's.:

How absolutely correct that is! I think that our other children sometimes have to grow up so fast because the time spent dealing with the issues from our children with disabilities can be enormous. My two girls are the most empathetic, understanding, caring, selfless kids I know because they see how "easy" their friends have it and don't appreciate it.

We make it a point to take them to DW often. It's the one place where we can all relax and forget about Doctors (well, aside from the two times my son got sick there) LOL