Making all of Mitchell's *WISHES* come true! MAW Pre-Trip Report!

Discussion in 'Pre-Trip Reports and Plans' started by Delaney21, Dec 17, 2011.

  1. Delaney21

    Delaney21 Mouseketeer

    Joined:
    Jul 10, 2010
    Messages:
    276
    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:

    [​IMG]

    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!!

    [​IMG]


    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. :lmao:

    [​IMG]

     
  2. Avatar

    Google AdSense Guest Advertisement


    to hide this advert.
  3. Delaney21

    Delaney21 Mouseketeer

    Joined:
    Jul 10, 2010
    Messages:
    276
    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."
     
  4. cogero

    cogero DIS Veteran

    Joined:
    Jun 11, 2008
    Messages:
    4,529
    Your family is gorgeous. I hope you will have a truly magical trip.
     
  5. Delaney21

    Delaney21 Mouseketeer

    Joined:
    Jul 10, 2010
    Messages:
    276
    Thank you! I am truly in love with all of them! :goodvibes

    Thanks for stopping by! I hope you have a very Merry Christmas! :santa:
     
  6. ZFamily5

    ZFamily5 DIS Veteran

    Joined:
    Jul 13, 2010
    Messages:
    860
    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!
     
  7. Delaney21

    Delaney21 Mouseketeer

    Joined:
    Jul 10, 2010
    Messages:
    276
    :welcome:

    Thanks for following along!
     
  8. blessedmom4

    blessedmom4 WE BELIEVE IN MIRACLES! ~~Nearly twice as many chi

    Joined:
    Apr 2, 2010
    Messages:
    4,471
    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! :goodvibes:goodvibes
     
  9. Blyssfull

    Blyssfull Mouseketeer

    Joined:
    Mar 4, 2011
    Messages:
    299
    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. :)
     
  10. ellenbenny

    ellenbenny DIS Veteran

    Joined:
    Feb 5, 2005
    Messages:
    2,059
    So glad you are doing a PTR, joining in!
     
  11. Moodyzblu

    Moodyzblu DIS Veteran

    Joined:
    Apr 29, 2006
    Messages:
    1,572
    I'm here ! Glad to see you started a Pre TR ! :banana:

    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. :thumbsup2
     
  12. billwendy

    billwendy DIS Veteran

    Joined:
    Aug 28, 1999
    Messages:
    4,944
    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.
     
  13. Delaney21

    Delaney21 Mouseketeer

    Joined:
    Jul 10, 2010
    Messages:
    276
    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. :woohoo:

    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.

    Thank you for the compliments! I'm happy you are joining us!

    Hi, Ellen! Thanks for joining in! Did you see my message to you on FB?

    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. :laughing:

    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.
     
  14. ellenbenny

    ellenbenny DIS Veteran

    Joined:
    Feb 5, 2005
    Messages:
    2,059
    No I did not get anything :confused3 Can you send it again? Thanks.
     
  15. blessedmom4

    blessedmom4 WE BELIEVE IN MIRACLES! ~~Nearly twice as many chi

    Joined:
    Apr 2, 2010
    Messages:
    4,471
    Your babies will LOVE Disney and they should be there with you as a family, I STRONGLY support your choice! AND MITCHELL'S!!!

    [​IMG]


    [​IMG][​IMG][​IMG][​IMG][​IMG][​IMG][​IMG][​IMG][​IMG][​IMG][​IMG][​IMG][​IMG][​IMG][​IMG][​IMG][​IMG][​IMG]
     
  16. Delaney21

    Delaney21 Mouseketeer

    Joined:
    Jul 10, 2010
    Messages:
    276
    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!!
     
  17. Moodyzblu

    Moodyzblu DIS Veteran

    Joined:
    Apr 29, 2006
    Messages:
    1,572
    Same to you !!

    Hope you have a wonderful holiday ! :santa:
     
  18. GrammyJudy

    GrammyJudy DIS Veteran

    Joined:
    Jan 9, 2008
    Messages:
    1,793
    Your children are gorgeous!

    Absolutely take the twins! We took our DGS when he was 4 months old...he loved it. He loved the colors, characters. music and all. He loved the pool. He was great... a couple of meals he was asleep, some he was fussy bit we have the pictures and those are priceless. His brother was 7 at the time.

    MY older GS who is 11 now has a heart defect that limits his activities. He has learned what he can and can't do but it is hard for my daughter to tell him he can't go on certain rides or play some sports.As your son gets older he will understand you love him and just want to protect him and limit his pain. I hope you have a doctor you like and trust and one that is good talking to children. That has made a big difference for my GS.

    When are you going? Please tell us all your plans and ask any questions you may have.
     
  19. Delaney21

    Delaney21 Mouseketeer

    Joined:
    Jul 10, 2010
    Messages:
    276

    Hello everyone! I hope you all had a wonderful Christmas! I’m sorry for the delay on getting an update posted, but as I said before, this is my busy time at work and every time I sit down to log onto the computer this happens….

    [​IMG]

    Seriously, they go crazy when the laptop is pulled out. Ahh…we’re starting them young! :laughing:

    We all had a fabulous Christmas. I don’t have many of our good pictures on this computer so I’ll only post one for now, but hopefully I can get some of the other ones soon. My sister surprised Mitchell with a Flynn Rider t-shirt and my parents got him his own luggage to take on his trip. He’s getting more and more excited every day!

    [​IMG]

    As far as the trip…we’re in waiting mode. It will still be awhile before we get our dates, I’m sure, so for now I’m planning a trip for when I’m hoping it will happen in May.

    Since Mitchell is primarily tube fed going to restaurants or even stopping for the rest of us to eat isn't fun for him. One of his main requests for his wish trip is to go to a character meal each day. It doesn't matter whether it is breakfast, lunch or dinner, but one night he wants to go to Hoop Dee Doo and he loved Crystal Palace, so he wants to go back there.

    Here is what we are considering right now:

    Crystal Palace – breakfast
    Ohana - breakfast
    Garden Grill - dinner
    Chef Mickey’s - dinner
    Tusker House - breakfast
    1900 PF – breakfast or dinner
    Hoop Dee Doo

    Seems like character overkill to me, but my goal is to make all of his wishes come true! :woohoo:

    My next goal is to start a list of all of his "wishes". I have a hard time with this because we always teach him to be happy with whatever he has and now I'm asking him to make a list of everything he wants...hopefully he knows this won't continue after this trip! :lmao:
     
  20. Moodyzblu

    Moodyzblu DIS Veteran

    Joined:
    Apr 29, 2006
    Messages:
    1,572
    That IS a lot of character meals .. but if that's what he wants !! It will sure be ton's of fun and tons of food .. lol

    I have done Crystal Palace and it was very fun .. but haven't done the others. Jayden isn't a big fan of sitting in restaurants either so we usually eat and run !

    LOVE the shirt ! :thumbsup2

    The pic of the babies and the computer is TOO cute !! :love:
     
  21. tinkerbellandeeyor

    tinkerbellandeeyor DIS Veteran

    Joined:
    Aug 4, 2011
    Messages:
    5,367
    Make a wish team will do their best
     

Share This Page