Make a wish trip oct 2012

[hanori]

Hi Everyone,
Just wanted to introduce ourselves at the right spot, I posted but I think in the wrong spot. We are headed to Disney world Oct 2012. We are DH Lonnie, DD HH Hannah 6, and DS Orion 4 almost 5, He was born with a complex congenital heart defect. He also has a rare syndrome called Heterotaxy syndrome. He has had 5 cardiac caths, 2 heart surgeries and 2 open heart surgeries. His wish was to see Mickey's Animals. We are getting so excited. We have been on quite a journey since his diagnosis at 21 weeks in utero. I will post his story later. I am so excited, I have been to disney but about 25 years ago and I can't wait to see it with my children. It's overwelming, but not knowing all the details is killing this momma, I am such a planner and we haven't even gotten any letter or anything saying we are going. I have been collecting info,lurking on here, and just trying to get as much info as possible.
So my 1st question is at what point did MAW let everyone know when you were going and an iteniary? Plan to be on here alot more since its so close. This is the best ...

 

[blessedmom4]

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So excited to read more! Each Wish Chapter is different on how they do things, so if you have specific questions about the process, I would definitely ask your Wish Granters.

We took my daughters MAW trip last October and it was AMAZING!! You are going to have a blast!

 

[hanori]

Thank you, I think that I'm going to send them an email tonight.

 

[Lilfoot93]

:

Jackie

 

[hanori]

I have a question for anybody, what about carseats, do I need to bring them fromhome, kids both sit in booster seats. Don't know what the laws in FLA are, they are 6 and 4 years old, 6 year old 75 lbs Wish boy Orion about 41 lbs

 

[hanori]

woo hoo, we just got our dates and we will be staying at GKTW Oct 23,2012 - Oct 29,2012 Orion's 5th Birthday is Oct 25. How amazing!!!!

 

[Lilfoot93]

Yay for dates what a wonderful way to celebrate his birthday! I am not sure about car seats as we haven't left on our wish trip yet. So I am curious to see what the answer is

Jackie

 

[hanori]

Hello, i did find out that we can take ours and check them and they do not count as part of your luggage also a stroller is the same, so glad because Orion could never walk through the airport with out being out of breath, and there is no way i could carry him lol he weighs 40 lbs. Also i know that you get a free stroller rentel but his is comfy and we can also use it for my 6 year old although she can walk just fine it's alot of walking for little legs!

 

[hanori]

ok i have tried 2 times tonight to post some of our story and when i get done it doesn't post and says i am not logged in. I am now doing it in word and saving it and then will copy and paste

 

[hanori]

So me and my husband had been married and dealt with infertility for several years, finally in June of 2005 we got pregnant with DD Hannah, it was wonderful, after that right after Hannah’s 1st birthday we found out we were expecting again. Wow 2 kids in 21 months I was 35 years old and have DM so with both of my kids I had lots of ultrasounds, in May 2007 we found out we were having a DS, but we did not have a name for him and were going back and forth, I was 19 weeks. Then at a regular check up with the perinatologist when I was around 21 weeks, I was having and U/s and she kept going to the same area, and it was taking a lot longer than usual. Then the Dr came in which he did before and always took a peek, but then he asked me to meet him in his office, he changed my life by telling me my son had no spleen, and had dextrocardia, he thought maybe something called heterotaxy syndrome. I was shocked and scarred I was alone, and couldn’t believe it. That was the longest drive ever, I stopped at my husbands job and told him, he was shocked also, we were devastated. 3 weeks later I went to a pediatric cardiologist and had an u/s. there I learned that he had Hypoplastic Left heart syndrome, and heterotaxy with no spleen, I was still in shock. I then had to tell our families and friends, it was very hard. Then we decided on a name Orion, special name for a special boy. My husband is a hunter and likes greek mythology. After lots of research, many tears and lots of prayers Orion was to be born at a hospital 70 miles from our home and I opted to have a repeat c- section. During this time I was going through the grief stages I was mad, sad, and so many other emotions and finally seen the poem by Erma bombeck about the perfect mother and then it struck me, why not us, why are we so special , and I knew it was meant to be . He was born Oct 25. He had a rough start cord around his neck, and low Apgar’s. I finally heard him cry and then got the see him. I was in awe of him; I couldn’t believe it, because he looked perfect, unfortunately I knew in his chest, it was far from perfect. But he was ours and was beautiful. After a while we got to see him and then he was off to the children’s hospital a few miles from where I was. My mom went over with him, my husband was scared to death, and he then went home to be with our Hannah. The next day Orion had his 1st of many cardiac caths. It was determined all of his defects and where everything was and what was going on in his chest. He was to have 3 surgeries over a few years and the 1st would be in a few days. He had is b-t shunt when he was 7 seven days old on Nov 1. He did well and it was a shock, because then a few days later it was discovered he had a 2nd PDA and would need a 2nd b-T shunt on the other side, He again did well and we were able to bring him a week after that. I was a little afraid, even being an LPN they barely touched on the subject of heart defects, which is strange since it kills more children than cancer every year. His sister finally got to meet him and boy was she surprised, and so in love with him. Orion did well he ate well, gained weight, slept well. Took his meds pretty well for a newborn. Then when he was having a routine Echo at 5 months old and he desated and his Dr said to take him home, don’t let him cry and wait for her to call because he was going to be having his 2nd stage of his surgery the glenn soon. He was 7 months old when he had his 1st open heart surgery. He had a good start after surgery, and I wasn’t allowed to stay in his room, so I stayed at my mom’s house about 15 minutes from the hospital. The next day he was ok, but they were cautious. I left that evening and went to mom’s, but after being there for only about an hour something told me to go back. I went back and about 45 minutes after being there Dr Fiore was going home and said we are watching him close. Well he wasn’t gone 5 minutes and Orion stopped breathing and went into V-Fib. They started CPR on him, all I could think was OMG, why, why, why. I was asked to leave the room, I told them once they got his heart beat back I would leave the room, Dr Fiore was back and doing chest compresions, they gave him epi 2 times and atropine 2 times. After what seemed like eternity but was only about 4 minutes, they got a NSR back and I stepped into the hall. I called my husband, my mom, my aunt who would take care of Hannah. I was a mess, again alone. I went and prayed and sat and hoped prayed and prayed some more. After that he was pretty stable, except during his surgery his vocal cord was paralyzed. We stayed a total of 3 weeks. More later.

 

[hanori]

Haven't been on here in a while, We leave Tuesday!! Our wish granters just left, and I am sorry to say I am so thankful for this opprotunity, but I am a little disappointed in some of the things that have happened. We get to Orlando On Tuesday @ 06:10 pm and then will go to GKTW and then the fun begins. We are leacing Orlando on Monday the 29th @08:40 am. I just feel disappointed they had told the kids that they would get to Trick or treat and they were so excited, but we will not be goingt trick or treating. i wanted to go to Mickey's Not so Scary halloween also because again they said we got to. But with it being so expensive and we were not alotted alot of many at all, I feel bad for the kids, they were very disappointed that they won't get to go Trick or treating, We were going as the wizard of oz. We aren't going to be able to do any extras and I know that it will be amazing I just thought that for once I wouldn't have to tell them No, and I feel like I will have to tell them No. I wish I would of known, and I could of tried to save money, but I only got the info tonight about any of this. I know it will be great but I had such high expectations after reading on here and other sites that I wouldn't have to worry about the finances, but here I am 4 days before we leave and I am super stressed and am wishing it was different. I know I am whining and i am sorry but

 

[blessedmom4]

I would love to hear how the trip went....

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