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Old 04-15-2009, 08:52 PM   #1
kmparrish5
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Bailee's Wish Trip

Hi everyone!

My name is Kristy (thirty-six). I have been married to a wonderful man, Stephen (thirty-nine), for twelve years. We have three terrific children, Bailee (nine-wish kid), Caroline (five…six in May), and Landon (twenty-two months).

Bailee has dealt with some challenges. She struggled to breathe immediately after birth and was diagnosed with Pierre Robin Sequence (PRS) shortly thereafter. PRS is a condition where the child is born with a small lower jaw, the tongue falls in the back of the throat blocking the airway, and a cleft palate develops due to the tongue’s position. This condition was considered a genetic mutation; therefore, we were told we would likely have healthy children if we chose to have more. After struggling to breathe and eat for five weeks, Bailee left the NICU with a feeding tube and trach. For most of the first year Bailee was in and out of the hospital. Her cleft palate was repaired at seven months. The hardest surgery however was the jaw distraction performed at ten months. This procedure lengthens the lower jaw hopefully enabling the child to breathe independently; as a result, the trach would no longer be needed. During this operation, the lower jaw bones on both sides of Bailee’s face were broken. Metal rods were attached to her jaw bones. They came out about two inches on both sides of her chin. We used a screwdriver type tool to turn the rods twice a day for two weeks. The surgery helped Bailee get rid of her trach at twenty-one months. Her feeding tube was removed at two and a half years. From September until April of Bailee’s first three years, she was unable to leave the house; otherwise, she would always end up in the hospital. Bailee has had a total of sixteen surgeries. Some were major while others were small day procedures. After all of these it has still not been easy to hand Bailee over to a medical staff. In addition to having experienced so many surgeries, Bailee has asthma and chronic sinus. At age three she also developed symptoms of anxiety and Obsessive Compulsive Disorder. She works to deal with these daily.
When Bailee was three and a half we had our second child, Caroline. She was born at forty-one weeks and continued to do well. She was a bit physically delayed and often sick, however. Her issues were much less severe than Bailee’s. We rejoiced and thanked God for this healthier baby.
We decided to go for a third and final child. Our son, Landon, was born when Caroline was four years old. We knew he would be our last considering I vomited constantly until both Caroline and Landon were delivered. I also became very ill with preeclampsia during the last week of my pregnancy with Landon. Landon was born at thirty-seven weeks. He showed no signs of PRS and was declared healthy. My gut told me something was wrong, however. Landon refused to eat while in the hospital, but the staff kept telling me he would eat when he was hungry. We went home feeding him with a one cc/ml syringe. He still continued to have no interest in eating for the first four months of life. Landon was barely growing and not getting stronger. I continued to tell the pediatrician something was wrong, but he kept saying Landon was just a little small. Landon was hospitalized with RSV at five months. At ten months he weighed thirteen pounds and could barely hold up his head. After changing pediatricians we began looking into the reasons for his failing to thrive. In addition to seeing a new pediatrician for help we also used a pulmonologist, neurologist, gastroenterologist, and geneticist. Landon became ill and ended up hospitalized due to dehydration. This turned out to be a good thing. We stayed until we found some answers. A modified barium swallow study showed Landon was aspirating all consistencies. As a result, he had surgery to place a g-button and was no longer allowed to eat orally. It seemed to be easier to deal with this since our oldest had one, also. I knew my sweet son would finally begin to grow and hopefully develop. Fast forward to the present…Landon is getting stronger every day. He has gained eleven pounds and grown several inches in the past year. He started walking at twenty months but needs orthotics to stabilize his feet. Landon is still completely fed via g-button. He has a strong desire to eat by mouth. We do not eat or drink in front of him since he cries if we do.
In May 2008 we finally got a diagnosis for Landon. We learned both girls and he have a 22q11.2 distal deletion. This is very rare and a newly diagnosed chromosomal deletion. There are only ten to twelve documented cases in the world. Therefore, we don’t know what the future holds. Our kids do get sick a lot; both girls have missed twenty to twenty-five days of school this year. Landon has been just as sick. They do seem to stay healthier during the warmer months; consequently, we are looking forward to them.

We just received confirmation for our trip dates. It will be May 23rd-29th! I better plan quickly since we leave in only 38 days!
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Bailee's PTR/TR link:
http://www.disboards.com/showthread....4#post31360944

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Old 04-15-2009, 09:22 PM   #2
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Kristy,I am so excited for your trip! Y'all are so deserving! I can't wait to hear how much fun your sweet kids have at Disney!
Now get to planning girl!!
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2002 Off Site, 2009 GKTW (Caleb's Wish Trip), 2010 POR, 2012 POR

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Old 04-15-2009, 10:08 PM   #3
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Wow...

Bless your heart!

I am so glad you guys are going to Disney!

And I see you already found the Wish Trippers thread...posted your 10 posts and are ready to go!! Congrats! You have this figured out!
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Old 04-16-2009, 07:22 AM   #4
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Yippee .... Disney trip

I hope you and your family have lots of fun in Disney If anyone needs some magic its you

You have a lot of health challenges to deal with. I obviously don't know you but I pray for you and your children. I can't imagine the stresses you all go through.

Enjoy your trip. We were there with our kids last November and my DD still talks about it EVERYDAY.
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Old 04-16-2009, 11:05 AM   #5
kmparrish5
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I have a question for those parents with tube fed kids. Our insurance covers our Pediasure for Landon. Our wish granter said that we could purchase it at Walmart with the money alotted for his daily food. However, if I already have it here I hate to not carry it with me. He gets 4 cans per day. I would have to carry a case with me. What have those of you who have gone already suggest? Would you carry it with you?
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Bailee's PTR/TR link:
http://www.disboards.com/showthread....4#post31360944

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Old 04-16-2009, 12:20 PM   #6
shordiebecka
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I'm sorry I can't give any insight onto your last question, but I just wanted to stop by and say how excited I am for you. It sounds like your family deserves this trip so much!!!
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Old 04-16-2009, 04:17 PM   #7
WishMom09
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Kristy, ask this question on the wish trippers unite page...I bet you will get some answers there!
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Caleb's Wish Trip TR
http://www.disboards.com/showthread....7#post30337247

2002 Off Site, 2009 GKTW (Caleb's Wish Trip), 2010 POR, 2012 POR


Last edited by WishMom09; 04-16-2009 at 08:44 PM.
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Old 04-20-2009, 10:06 AM   #8
WishMom09
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So do you have your days planned out yet?
We would love to read your plans!!
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Caleb's Wish Trip TR
http://www.disboards.com/showthread....7#post30337247

2002 Off Site, 2009 GKTW (Caleb's Wish Trip), 2010 POR, 2012 POR

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Old 04-20-2009, 02:38 PM   #9
kmparrish5
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Quote:
Originally Posted by WishMom09 View Post
So do you have your days planned out yet?
We would love to read your plans!!
Our send off party was scheduled to be at Bailee's class. However, she made herself physically sick on Friday worrying about the party and being the center of attention. I contacted Angela, our MAW granter. She was very understanding and is allowing a small party at home on the Thursday before we leave.

I have a first draft of our plans. They may change when we get our flight times.
Saturday, May 23rd - Arrive (no times yet)...we will want to attend Mayor Clayton's Birthday Party at GKTW! I am sure we will do something else that day when we get our flight times.
Sunday, May 24th - Animal Kingdom (I think this will be Bailee's favorite)....Candy Land Party at GKTW
Monday, May 25th - Character Pictures at GKTW
Universal Studios and Universal Island of Adventure...this is Memorial Day so the parks might be crazy...this will probably be a short day
Tuesday, May 26th - (Princess Caroline turns 6) We will be at Magic Kingdom that day!
Wednesday, May 27th - Horse Back Riding at GKTW early that morning....Epcot
Thursday, May 28th - Character Pictures at GKTW...Hollywood Studios....then back to GKTW for Christmas!!!!
Friday, May 29th - Leave and go back to TEXAS....maybe we can squeeze something else in if we have time.

We are going to take each day as the kids can handle them. Bailee gets stressed out easily. She is not comfortable around lots of people some days. We are going to try to make this a calm, but fun trip.
I want to look at the parade schedules, but don't know where to find them.

If anyone sees something I completely missed on our schedule....feel free to let me know.
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Kristy , Stephen , Bailee (10 -wish kid) , Caroline (6), and Landon (2)
Bailee's PTR/TR link:
http://www.disboards.com/showthread....4#post31360944

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Old 04-20-2009, 06:41 PM   #10
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Joining in on your fun, sounds great so far!!!
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Our very magical, very first trip to Disney World!!
http://www.disboards.com/showthread.php?t=2182745

Come check out my Pre Trip Report, May 09
http://www.disboards.com/showthread.php?t=2066680
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Old 04-21-2009, 08:32 AM   #11
maroo
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Quote:
Originally Posted by kmparrish5 View Post
Our send off party was scheduled to be at Bailee's class. However, she made herself physically sick on Friday worrying about the party and being the center of attention. I contacted Angela, our MAW granter. She was very understanding and is allowing a small party at home on the Thursday before we leave.

I have a first draft of our plans. They may change when we get our flight times.
Saturday, May 23rd - Arrive (no times yet)...we will want to attend Mayor Clayton's Birthday Party at GKTW! I am sure we will do something else that day when we get our flight times.
Sunday, May 24th - Animal Kingdom (I think this will be Bailee's favorite)....Candy Land Party at GKTW
Monday, May 25th - Character Pictures at GKTW
Universal Studios and Universal Island of Adventure...this is Memorial Day so the parks might be crazy...this will probably be a short day
Tuesday, May 26th - (Princess Caroline turns 6) We will be at Magic Kingdom that day!
Wednesday, May 27th - Horse Back Riding at GKTW early that morning....Epcot
Thursday, May 28th - Character Pictures at GKTW...Hollywood Studios....then back to GKTW for Christmas!!!!
Friday, May 29th - Leave and go back to TEXAS....maybe we can squeeze something else in if we have time.

We are going to take each day as the kids can handle them. Bailee gets stressed out easily. She is not comfortable around lots of people some days. We are going to try to make this a calm, but fun trip.
I want to look at the parade schedules, but don't know where to find them.

If anyone sees something I completely missed on our schedule....feel free to let me know.

Your plans look GREAT!!! I was going to ask you guys if you wanted a planner...but it looks like you have included everything that I would have suggested!

I have finally linked this back on the Wish Trippers thread! I have no idea what happened there!
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Old 04-21-2009, 09:23 AM   #12
WishMom09
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Your plans look great! I think Caroline will get a button and maybe a gift certificate (since she will not be using the get in free for your birthday deal)??? Am I making this up? I thought I read that somewhere!
You should ask at the park! I know she will get a birthday button though!
What a great place for a princess to spend her birthday!!!
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Caleb's Wish Trip TR
http://www.disboards.com/showthread....7#post30337247

2002 Off Site, 2009 GKTW (Caleb's Wish Trip), 2010 POR, 2012 POR

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Old 04-21-2009, 09:59 AM   #13
maroo
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The parade schedule can be found here...

www.wdwinfo.com


But I must warn you. It can, and probably will, change before you get there. Normally they ADD parades, though, and don't normally cancel them. But you can check right before you leave and they may have added one.
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Old 04-22-2009, 10:32 AM   #14
BeckySob
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Yay! You're going to Disney! You will have so much fun, and you guys deserve to have all the fun! We just got back from there last week. GKTW is sooooo amazing!

My daughter was tube fed for almost 8 years, so I know what you're going through! Expensive stuff!

My advice to you....pack light, as they have washer/dryers in your villa! You will need the extra room in your baggage for all the stuff you bring home!
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Old 04-23-2009, 09:57 AM   #15
kmparrish5
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New Plans...

I have changed our plans since I was able to get a reservation for lunch with the Princesses on Caroline's birthday! Here are the new plans. I also added parades to this draft. My kids get really cranky and tired when we make the days too long. Therefore, I think it will be better to do the parades that occur during the day most of the time. We may change our minds once we get there.

[B]Saturday, May 23rd[/B] - Arrive (Waiting for Flight Times), Mayor Clayton's Birthday Party @ GKTW, and Downtown Disney
Sunday, May 24th - Animal Kingdom, Jammin Jungle Parade @ 3:45 p.m., and Candyland Party @ GKTW
Monday, May 25th - (Memorial Day) - Characters at GKTW, Universal Studios and Universal Island of Adventure
Tuesday, May 26th - (Princess Caroline's Birthday) - Horseback Riding @ GKTW, EPCOT, Princess Storybook Dining @ 2 p.m., Illuminations Parade @ 9:00 p.m. (this is only if they can make it that long)
[B]Wednesday, May 27th [/B]- Magic Kingdom, Dreams Come True Parade
@ 3 p.m.
Thursday, May 28th - Characters @ GKTW, Hollywood Studios, Block Party Parade @ 3 p.m., Christmas @ GKTW
Friday, May 29th - Going Home To Texas, Depending on Flight Times we may sneak in something else
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Bailee's PTR/TR link:
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