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Old 12-17-2011, 12:28 AM   #1
Delaney21
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Making all of Mitchell's *WISHES* come true! MAW Pre-Trip Report!

Hi Everyone! Welcome to our Pre Trip Report! This report is dedicated to all of the planning going into Mitchell’s wish trip!

Preliminary:

In October I received the call that Mitchell was going to be granted a wish from Make a Wish. At first I was ecstatic, smiling from ear to ear, telling everyone around me and so excited for him. Then reality set in….if he was granted a wish, that means he’s really bad…oh no, this can’t be true….really, are they sure he qualifies?? I don’t know if other wish families go through this, but despite being so happy for him, it brought me down for a couple of weeks. I’m back at being very happy for him and ready to plan the best trip ever!

The Wish:

Mitchell made his official wish on Tuesday. We had decided that we wouldn’t talk to him about his wish prior to the wish grantors coming out because we didn’t want to influence his wish. That totally backfired on us!! His first wish was to go on a Disney Cruise. Unfortunately, it would be impossible for us or MAW to make this safe for him so he had to come up with a new wish. He was bummed because “he wanted to see Captain Mickey and sleep on the boat for 7 nights.” Thankfully, he quickly switched it and his official wish is - to go to Disney World, go on the Safari and meet Flynn Rider. He thinks Flynn Rider is the coolest thing ever and he is the first character Mitchell has ever idolized.

Mitchel has a list of additional things he would like to do and I’m going to try to make sure they all happen. The past few years have been pretty rough for him and it sounds like they are only going to become worse in the next year, so we have been setting money aside to make this trip extra special for him.

About Mitchell:



Mitchell is an amazing 5 year old, who is all boy! He loves playing baseball, playing in the mud and running around the house screaming….all while driving us crazy! He’s smart as a whip and loves to show it off. He is in a pre-K class, but is already reading at a 1st grade level, can navigate a computer better than most and has been known to give tutorials on smart phones for new users...ok, let me brag please, it doesn’t happen often! 

The medical side: Mitchell has a severe form of Eosinophilic Gastroenteritis, a rare auto-immune disorder which causes life threatening consequences for him any time foreign substances (food, drink, medicine, etc.) are introduced into his body. His reactions to these substances range from anaphylaxis, GI distress (debilitating pain, bleeding and tissue damage leading to malnourishment and dehydration), and respiratory illnesses such as pneumonia. Mitchell’s primary source of nutrition is an amino acid formula, which he gets through a g-tube. His reactions are still not typical for this disorder and much more severe than the typical case. It is presumed he has yet another disorder that we haven’t discovered yet. At this point, he is doing very well so we don’t want to rock the boat trying to find that missing piece. More on Mitchell below…

The other wish trippers:


A couple years ago, we decided Mitchell needed a sibling. There is a genetic component to Mitchell’s disorder so we had to consider that. After speaking with all of his doctors and weighing the risks, we decided to move ahead and….SURPRISE, it’s TWINS!!




Mason and Mallory were born in April of this year and they totally complete our family! Mitchell is totally in love with his little brother and sister. He is seriously the best big brother ever. He will do what ever is necessary to keep his brother and sister happy! I had asked the question in a another thread on here as to whether we should take them with us on our trip and someone recommended we ask Mitchell what he thought. When we asked him, he looked at us like we were crazy to even consider leaving them home and he insisted they needed to come with us. We asked our wish grantors if we could bring along someone to help care for the babies and we were told it was probably not possible. I think either way, we’re going to have to find a way to make it work because at this point, the babies are only 8 months old and still a lot of work.

Mom, Jessica (me) and DH Kyle, who is seriously the best husband and father ever!!! We are the typical parents who love their kids more than life it self. Ok, sorry I have an issue with talking about myself….so we’re going to skip that part.



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Mitchell's Make a Wish Trip Report: Making all of Mitchell's *WISHES* come true! MAW pre-trip report!

Last edited by Delaney21; 12-17-2011 at 12:43 AM.
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Old 12-17-2011, 12:30 AM   #2
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History:

When starting foods at 6 months, Mitchell started constantly screaming in pain and he stopped growing. At 11 months of age he was diagnosed with failure to thrive as he dropped off the growth charts and began to lose weight. After testing it was revealed he has Eosinophilic Gastroenteritis. Shortly after his diagnosis, Mitchell quit eating due to the extreme pain and he was admitted into the hospital for severe malnourishment and dehydration. After a week of trying to figure out why he wouldn’t eat, he received a feeding tube and he was taken off all foods. For the next 8 months, the only thing Mitchell ate was ice.

We traveled cross-country to meet with the best doctors in the country and over the past 4 years under close supervision, Mitchell has been trying foods, medicines and hygiene products, such as toothpaste. Mitchell reacts to these trials by; 1) immediate life threatening anaphylaxis requiring Epinephrine injections, an ER visit and a week of steroids, or 2) a delayed GI reaction, which typically happens 4 days following the introduction of the substance. This is followed by about a week of intense pain and vomiting. During this period, Mitchell quits eating and his g-tube feedings have to be stopped or he will continue to vomit. He then needs to be set up on a continuous cycle of pedialyte at a very slow rate through his g-tube so he doesn't become dehydrated. Sometimes this rate is too much, he continues vomiting and he will need to be hospitalized. After this, it takes him another week to build his strength back up until he can function normally. Within a few days from recovering from the GI reaction, Mitchell will typically come down with a respiratory illness, such as pneumonia, which has resulted in additional hospitalizations. Each instance takes approximately 4 weeks to fully recover from and then he starts the process again with another food. After all of these trials, only seven foods have been successfully added to his diet.

In addition to this, a cost-benefit analysis has to be done for every illness or injury Mitchell has as to whether the medicine he needs is worth the risk of what it could do to his body. As a result, for example, he couldn’t have any pain medication after getting staples in his head due to a large laceration, or following surgery to place ear tubes and have his adenoids removed. Ear infections need to be evaluated – use the 1 antibiotic we know that doesn’t hurt him, or watch it and see what happens.

Now, Mitchell doesn't want to try any new foods. He knows the majority of foods cause him extreme pain, so he is happy with what he has. Occasionally he will say he wants to try a new food, then after eating it once, he says he is done because he doesn't want it to hurt him. My heart aches for him!

The new challenge for Mitchell is he sees his brother and sister trying new foods and he is confused as to why they can eat more things than he can. We have always told him that's just the way it is and he may be able to eat more when he's older, so he thinks everyone younger than him should have a limited diet. Now his baby brother and sister can eat more foods than him and he's really struggling with this. It's so hard to tell your child..."I'm sorry baby, but you just can't eat."
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Mitchell's Make a Wish Trip Report: Making all of Mitchell's *WISHES* come true! MAW pre-trip report!

Last edited by Delaney21; 12-17-2011 at 12:47 AM.
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Old 12-17-2011, 08:36 AM   #3
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Your family is gorgeous. I hope you will have a truly magical trip.
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Old 12-17-2011, 09:00 AM   #4
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Quote:
Originally Posted by cogero View Post
Your family is gorgeous. I hope you will have a truly magical trip.
Thank you! I am truly in love with all of them!

Thanks for stopping by! I hope you have a very Merry Christmas!
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Old 12-17-2011, 10:02 AM   #5
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I'll be following along too! Mitchell and Mason and Mallory are adorable and I can't wait to read about your much needed vacation to Disney World!
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Old 12-17-2011, 01:54 PM   #6
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Originally Posted by ZFamily5 View Post
I'll be following along too! Mitchell and Mason and Mallory are adorable and I can't wait to read about your much needed vacation to Disney World!


Thanks for following along!
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Old 12-17-2011, 02:04 PM   #7
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So happy Mitchell received his wish. We took our oldest daughter to Disney as an infant and had a FABULOUS time! I think it will be a great excuse to have some down time at GKTW...it is simply amazing!

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Old 12-17-2011, 10:10 PM   #8
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Joining in for all the Planning fun. Your family pic is so precious... He is a very handsome little boy. Looking forward to reading more and watching the excitement build.
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Old 12-18-2011, 08:48 AM   #9
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So glad you are doing a PTR, joining in!
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Old 12-18-2011, 10:32 AM   #10
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I'm here ! Glad to see you started a Pre TR !

Your family is beautiful !! Isn't having twins fun ?? I love every second of it. (well almost ! )

Looking forward to reading about your plans too !

I got more paperwork to fill out and had to send it to MAW .. hopefully we'll hear more after they receive it.
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Old 12-18-2011, 03:18 PM   #11
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Hi - I hope you have a GREAT TRIP!!!!!

We came along on my nephew's trip to help them with their 5 kids - we paid our own way, but were able to enjoy the trip with them. I think up to 7 people can stay in a villa at GKTW??? but the extra people have to pay for their own tickets and things. Im not sure about the eating at GKTW, we were allowed to eat 1 meal there as a guest, but were unable to purchase or attend any more than that.
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Old 12-19-2011, 04:53 PM   #12
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Sorry for the delays, this weekend was crazy busy! We had to start and finish our Christmas shopping all in 2 days, but thankfully, minus a gift card, we are done.

Quote:
Originally Posted by blessedmom4 View Post
So happy Mitchell received his wish. We took our oldest daughter to Disney as an infant and had a FABULOUS time! I think it will be a great excuse to have some down time at GKTW...it is simply amazing!
I'm happy to hear a positive story about taking an infant! Everyone keeps telling me I'm crazy for wanting to take the twins. They are such good babies and I'm sure they will love watching all of the excitement.

Quote:
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Joining in for all the Planning fun. Your family pic is so precious... He is a very handsome little boy. Looking forward to reading more and watching the excitement build.
Thank you for the compliments! I'm happy you are joining us!

Quote:
Originally Posted by ellenbenny View Post
So glad you are doing a PTR, joining in!
Hi, Ellen! Thanks for joining in! Did you see my message to you on FB?

Quote:
Originally Posted by Moodyzblu View Post
I'm here ! Glad to see you started a Pre TR !

Your family is beautiful !! Isn't having twins fun ?? I love every second of it. (well almost ! )

Looking forward to reading about your plans too !

I got more paperwork to fill out and had to send it to MAW .. hopefully we'll hear more after they receive it.
The waiting is so hard!! When our wish grantors told us it would be a few months before we knew if his wish would be granted, I think Mitchell was about ready to fall out of his chair!

Having twins is a blast! I know people think I'm not so nice when I say I wish everyone had twins, but it is amazing! Mason and Mallory are only 8 months old, but we can already see the boy/girl differences and it's so fun to watch them interact. The best part is putting them down to bed and then sneaking back in after a few minutes to watch them holding hands through the crib bars or reaching through to tickle each other's feet.

Quote:
Originally Posted by billwendy View Post
Hi - I hope you have a GREAT TRIP!!!!!

We came along on my nephew's trip to help them with their 5 kids - we paid our own way, but were able to enjoy the trip with them. I think up to 7 people can stay in a villa at GKTW??? but the extra people have to pay for their own tickets and things. Im not sure about the eating at GKTW, we were allowed to eat 1 meal there as a guest, but were unable to purchase or attend any more than that.
Thanks for joining in! That's very good to know! I'm hoping we'll be able to have enough room for an additional person to come with us!

I will be updating with preliminary trip details soon. Mitchell is working on a list of everything he wants to do when we are there, so I'll type that up soon and try to figure out how to fit it all in to our busy schedule.
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Mitchell's Make a Wish Trip Report: Making all of Mitchell's *WISHES* come true! MAW pre-trip report!

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Old 12-19-2011, 06:56 PM   #13
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Hi, Ellen! Thanks for joining in! Did you see my message to you on FB?
No I did not get anything Can you send it again? Thanks.
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Old 12-20-2011, 07:44 AM   #14
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Your babies will LOVE Disney and they should be there with you as a family, I STRONGLY support your choice! AND MITCHELL'S!!!




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Old 12-23-2011, 01:19 PM   #15
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I'm doing a drive by post to say...

Merry Christmas Everyone!!!


This is a *VERY* busy time for me at work and will be for the next few weeks, so I don't have much free time to do anything else right now. Please forgive me for the lack of responses and updates during this time. I might be able to swing an update next week because it should be relatively quiet in the office....but if not, I hope everyone has a very Merry Christmas and a Happy New Year!!
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