Allison's MAW/GKTW Pre-Trip Report ***1/27 TRIP REPORT STARTED***

Discussion in 'Pre-Trip Reports and Plans' started by 4monkeys, Nov 13, 2010.

  1. 4monkeys

    4monkeys Mouseketeer

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    I have been lurking on the board for a week or so. Finally go the nerve to sign up, then posted and was referred here!! So here goes.... Hopefully I do this right!?!?!?!?

    The who: Hello. My name is Amy. I am the mother of four wonderful kids and Navy wife to my high school sweetheart. Our oldest son is 15, our wish kid is 12 then we have 2 more little guys 4 and 6 months.

    The Why: My daughter was diagnosed almost 2 years ago with Indeterminent Inflammatory Bowel Disease. Although, they are now saying Crohn's. She has had symptoms since she was 2 and it took 8 years and A LOT of doctors to finally figure out what was wrong. Allison has always been a trooper. Happy and goes with the flow. Rarely did she complain, but when she did.....you knew she was sick.

    She doesn't have the "normal" symptoms most people have with Crohns. She has mostly suffered with Oral lesions (apthous ulcers) beginning at 2 years of age. She was first hospitalized then for severe dehdydration. She would continue for the next few years to have occasional sores in her mouth. Pediatricians and dentists said just watch what she eats there is nothing more to do. When she started school the sores became more frequent and she would have more and more at the same time. So begins the referalls to numerous specialists and many oral treaments and magic mouth washes. NOthing worked. In Sept 2008 she was referred to her GI dr. She had not grown in the past year and actually started to lose weight. They did a work up for IBD and other than her Inflammatory marker being elevated he didn't think it was IBD. So again..... we are on our own. At this point she has NO Days between sores. They are constant and at varying stages. Normally having 10 or more at a time (sometimes they would get big enough that 2 became 1 large one) She can't eat, can barely talk. Her meals consisted of Pediasure, applesauce, pudding....

    November 2008 comes and so does the severe chest pains and fast pulse. Within 3 days she was in the ER 3 times for her heartbeating very fast and chest pains. No diagnosis. Referred to Pediatric cardiolgist with a halter monitor. Of course no repeats during this!! Then the abdominal pains began. Not little ones, NO she needed 2-4mg of Morphine to help with the pain. After several trips to the ER and pediatrician, back to the GI doc we went. After the "normal" crohns symptoms started, he decide to do her first EGD/Colonoscopy. Finally some answers. They think she has Inflammatory Bowel Disease. Once diagnoed, she was started on medications right away specifically for the Inflammatory Bowel Disease. The first few treatment plans did not work or caused additional problems. She started Prednisone in January of 2009 because she was still having so many sores in her mouth. We also were refered to Oral surgeons to do biopsies. Around this time she started with nasty productive cough and they didn't want to used sedations, so my strong girl stayed awake and did the surgery under local anesthesia!! The results.. inconclusive.

    After 4 or 5 attempts to wean off prednisone they decided it was time to try something new. This is Sept 2009 and she ended up on Remicade. Finally after a year on prednisone she was weaned. Just in time for Christmas!! What better gift! She has now been getting remicade for 14 months. She just had her second EGD/Colonoscopy. We didn't get the best news and it looks like her Remicade is not working!! They are giving her one more chance at the max dose of Remicade. If that doesn't work we need to try something new. She has several other issues that go along with Autoimmune diseases as well as chronic upper respiratory and sinus infections. ( Back In January she was to have the oral surgery but couldn't be sedated because of her respiratory status) She has been on antibiotics for months at a time for these URI. Tons of labs, xrays, IV's ......

    That's the nutshell anyway. So here we are!!

    Where Make Wish comes In: She was referred to MAW by the nurses in her hematology/oncology treatment center. It took quite a while to hear anything back (MONTHS) because the doctors papers "didn't make it back" to MAW. Once they got them, it has moved VERY quickly. We got the letter in the mail that our Volunteers would be calling. Less that 2 hours after opening the mail they called. They were at our house 2 weeks later. They brought Allison a MAW barbie!! So cute. It is displayed on a shelf in her room. More paper work, birth certificates, more papers for the dr. Which by the way, her dr. was deployed very suddenly to Afghanistan in October. So the one doctor that finally figured out what was wrong AND gave her quality of life back..... is now gone. But that's a whole other story. So the papers again finally make it back to MAW. Our Wish Granter calls and literally wanted us to leave in 2 weeks from when everything was approved. (Which would have been today)

    Her first wish was to meet Harry Potter's George and Fred. We were told we would have to be willing to leave within 48 hours of being notified, which with a Sailor you just can't do. Her second wish was to go to The Wizarding World of Harry Potter. They decided to have us go to GKTW and visit the Orlando parks, which includes IOA where Harry Potter is. She is a huge Potter fan.

    Our trip is December 12-18. She is so excited!! And we are all excited as well. We LOVE Disney!! LOVE LOVE LOVE it!! DD LOVES Tink :tinker: Even at 12 still has alot of her in her room!! We have nothing specific planned at this point.. just to kinda go with the flow.

    I feel like I just said so much, but yet it isn't nearly our whole story!other It doesn't even go into the kiddos or my husband or I So happy to have found this board!! YAYAYAYAYAY:yay:

    Please help us plan!!
     
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  3. DVCWDWMEMBER

    DVCWDWMEMBER DIS Veteran

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    :welcome:

    Welcome to Disboards. So glad you posted. I am so sorry to read about your little girls health problems. She sure sounds like a trooper. Your family will have a wonderful time in Florida. You will have to post about your trip once you get back. party:
     
  4. tinytreasures

    tinytreasures DIS Veteran

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    welcome to our group
    can't wait to hear all about her trip
     
  5. Emilyswish

    Emilyswish Mouseketeer

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    Welcome to the board. You'll be going right before we do so I'll be looking forward to hearing all about your trip.

    My name is Aimee and I have four kids too btw! ;)
     
  6. kailatilear

    kailatilear Mouseketeer

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    Welcome to the boards. Your family has been through so much, I am so glad she is getting a wish. We too are from VA, which chapter did you go through? I am just wondering, we are going through the central VA Chapter, since we live in Richmond. We are hoping it doesn't take too long, hoping to go in March. Our wish volunteers came out on 10/25 for Abby to say her wish and now just waiting to hear something back. I hope you have an awsome time on your trip.:cool1:
     
  7. 4monkeys

    4monkeys Mouseketeer

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    That is the same chapter we went through.Although, the satelite office in Virginia Beach took care of it I think?!?! Good luck, it shouldn't take long.

    Thank you for the welcome Aimee!! Pretty cool we have 2 things in common.:woohoo:
    Thank you

    We can't wait to go. It will be so nice to get a break, especially since she has had a nasty URI and 2 flares in less than a month.
     
  8. 4monkeys

    4monkeys Mouseketeer

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    Day 1~ We arrive in Orland around noon. I fgure we will head to GKTW and check in, hang out there for the day. Any good suggestions what to do while we are there????

    Day 2~ WWHP. YUP~ Alli's first order of business is Harry Potter. Not sure if she wants to get the Butter Beer first or some rides. It's her day, so she can decide. Suggestions always welcome

    Day 3~
    Day 4~
    Day 5~
    Day 6~
    Day 7~ Heading home. Our flight is at 3:30


    Not much, but it's a start:yay:
     
  9. 4monkeys

    4monkeys Mouseketeer

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    Our Wish Princess Allison. Born at 38 weeks due to pre-eclampsia, pre-term labor at 7 months. Multiple URI and UTI's from birth until age 4. Diagnosed with Severe Crohn's in January 2009. Please see her Pre-trip report for her story. This picture is her at Victory Junction Kids Camp this past summer.The camp is AWESOME! It is for children with chronic health problems. The week Alli went was for kids with GI diagnosis and I believe cancer.
    [​IMG]

    Daddy and Alli. Dad is currently active duty Navy. He was placed on limited duty recently for his own health issues. He has uncontrolled hypertension while already on multiple meds. Muliple visists to the ER, with 1 admission in less than 3 weeks. Many symptoms and tests. We are awaiting results.
    [​IMG]

    Alli's first Remicade treatment.
    [​IMG]

    Big brother Jake!! 15years old~ Born at 36 weeks, after trying to come at 24 weeks. (First time with pre-eclampsia/pre-term labor/GD, multiple hospilizations, home health) Our miracle baby! Currently a straight student on the Varsity Football team
    [​IMG]

    Me and our youngest 2. Jonathon (4) born at 38 weeks (due to pre-eclampsia) at 9 months stopped growing. He ended up on very strict diet due to multiple food allergies.Put on Elecare formula and medications to stimulate his appetitie and help with his reflux and reactive airway. He has since outgrown all of that, challenged and passed all food allergies, no longer has reflux and is thriving. Christopher (6months) was born at 36 weeks (due to pre-eclampsia) Initially lost 18% of birth weight and was readmitted at 2 weeks. Had feeding issues and recieved home occupational therapy up until 4 months. He was bottle fed (breast milk) until then, at 4 months we were able to get him exclusively breastfed!! (Huge accomplishment for me and him) He is still on the tiny side, but continues to grow and is sooo happy. During this period of feeding trouble I was diagnosed with severe post partum depression. What a wake up to what people go through. My mother had to come stay with us for 2 months to help care for my kids as DH was out to sea most of that time. What a blessing my mother was!! Our family all lives out of state, my mother took time off work to help.

    [​IMG]

    After this year, we are all so ready for a break!!
     
  10. Glo's wish

    Glo's wish Mouseketeer

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    Congrats on dates! I cant wait to hear about your plans. We think we are going the week of my DD's (wish kid) 7th birthday which is March 1, but that is not confirmed yet. Anyway, :welcome: and I am subbing!
     
  11. maroo

    maroo DIS Veteran

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    Sounds like you guys have been through the wringer! :(

    I am so glad you are getting an awesome trip for Allison!! :)

    I added you to the Make a Wish thread with all of us!

    So glad you found us!
     
  12. 4monkeys

    4monkeys Mouseketeer

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    I read your PTR, and am so glad you guys are getting a wish. I hope that Gloria is able to go for her birthday. How awesome would that be?!?!

    Thanks Maroo for adding us to the thread. Yours was the first I read.:) It was a fluke that I even found this site. I googled MAW Disney trips and your thread is where it took me. I have been reading and getting LOTS of info from this board.:thumbsup2

    I feel like I am so far behind in our planning!:confused3 I see everyone's awesome plans and GREAT pics. I have some work to do!:surfweb:

    The personalized things people have are great!!
     
  13. Joshay2234

    Joshay2234 Joshay2234

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    Hi Amy! I just read about your daughter (just gorgeous, by the way) and my best friend in high school pretty much has the same story, only her lesions were in a different area. After dealing with this for so long and having all of the medications NOT work, she decided after the birth of her second child to get the colostomy (sp?) bag. She was miserable for 18 years because of Crohn's and after the initial self-consciousness of the bag, she has been really happy and healthy. I hope they find a cure for Crohn's just like I hope they find a cure for what my little girl has. Until then, we will deal with it and try to make the best of a bad situation.

    Your itenerary is a lot like mine. Pretty much go with the flow. I want to schedule in some things, but am trying not to control too much of our days there.

    Good luck planning and have a blast!!!:thumbsup2
     
  14. 4monkeys

    4monkeys Mouseketeer

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    Hi, thanks about Alli!!:lovestruc Sad that your friend had to go through that for so long, and end up with what everyone tries to prevent. We actually just got back from seeing the Gastroenterologist. BOY OH BOY!! That traffic was terrible, and the baby cried 1/2 way home. We were given a lot of new info today. (This is a new dr) He is very nice, and seems to genuinely want to help. He has some new thoughts and wants to test her for a few more things that have been checked yet. He also wants to see if her cortisol levels are low in the morning and that is why she has been sooooo tired lately.
     
  15. 4monkeys

    4monkeys Mouseketeer

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    I just spoke with our Wish Manager to find out what happens next. We should hear from our "party" volunteers the beginning of December. They will set up the time of Allison's party and we get our package then. She said that GKTW sends their own package seperately, but doesn't know their timeline for sending!

    I figured I would research the park hours and compare to GKTW activities. Still only really have Monday planned. Alli mentioned wanting to go to the MVMCP Sunday after we arrive/check-in/possibly do orientation.

    Can't believe it's so close!:cool1:

    Does anyone know if we can pack all of the family meds in a carry-on for a medical bag??? And can we pack Allison's pediasure in there??
     
  16. fulseasmama

    fulseasmama Mouseketeer

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    What a beautiful family you have! I am so glad Allison is getting her wish as it sounds like she has been through so much. What a great opportunity to spend some magical time together as a family. I am excited to continue following your planning and can't wait to hear about your trip when you return.
     
  17. 4monkeys

    4monkeys Mouseketeer

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    Thank you! I read your PTR too, and am following along!! :)
     
  18. 4monkeys

    4monkeys Mouseketeer

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    So, I have been reading through other threads. Well let's say I am now in panic mode!:scared1:

    We have never flown as a family. (I have only flown once) I don't know what to pack or how to pack for a flight. We always driven and space wasn't nearly as much a problem.

    People are talking about packing sheets for the playpen/crib. Blow up tubs. And high chairs. WOW..... Do I need all this too?? I don't remember reading about that on GKTW website. :surfweb:

    Also, anything that we absolutely shouldn't forget??? Medications will be with us never leaving our side... but what else??

    People have outfits planned according to where they will be. I haven't done any of that. I haven't figured out what weather to pack for.

    On a better note, we get to watch Alli dance tonight. She had to give up dancing 3 years ago due to all of her medical issues and inability to keep up. She just started again!! So happy for her!!:banana:
    This all happened so quick. Don't get me wrong, we want to go and Alli deserves it... I just need some help. So glad I found disboards.
     
  19. smileycrissy

    smileycrissy DIS Veteran

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    Hi!! Just joining in. I can't offer much help with what to pack for GKTW, I imagine that they will have everything you will need for your stay there. :confused3

    However I can help you with the clothing since I live near Disney. :) It's still warm during the day (about mid-upper 70's) so I would say pack up some shorts or capri's, short sleeved shirts. I do suggest packing some long jeans/pants and a lightweight sweater for all but the baby (because he'll probably need to stay warmer). It has been cooler in the evenings and the early mornings. When it comes to packing I've heard the rolling technique seems to save space in luggage. I've always over packed when I traveled in case I wasn't sure if I wanted to wear this outfit or that so no technique has ever helped me. :rotfl:

    Which airline are you flying thru?

    And really, don't panic if you forget anything. There is a Walmart next to GKTW and its open 24 hours.

    Yay for Alli's return to dancing!! :banana::banana: I hope she enjoyed herself.

    Oh and by the way, you do not look old enough to have a 15 yr old kid!! :)
     
  20. fulseasmama

    fulseasmama Mouseketeer

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    Yeahhhhhh for Alli's return to dancing. That is so great!:mickeyjum
     
  21. 4monkeys

    4monkeys Mouseketeer

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    Thank you for the info!! I hope to not over pack, but have never been good at that!!:rotfl:I will have to try the rolling thing. Never done it!

    We are flying Airtran. MAW got us a direct flight since we have little ones. There are 2 airlines close by, and we are going to the further one so we can get that flight.

    Glad to know there is a Walmart. I think we will be hitting that up the first day. ;)

    And I'm not old enough to have a 15 year old:eek::rolleyes1

    We are very happy she is dancing again. Hoping it helps with her energy levels!!:tinker:
     

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