Has anyone done a MAW trip with a lot of children??

Discussion in 'disABILITIES!' started by SixUnderSix, Feb 17, 2013.

  1. SixUnderSix

    SixUnderSix Earning My Ears

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    Hi all - we just found out last Friday that our 2 year old adopted son was going to be granted a wish through the MAW foundation.

    He is terminally ill and has several circumstances that I am researching to see what he can do and can't (he's on a feeding tube, in a wheelchair, and has a pulse ox monitor and is sometimes on oxygen).

    My question is, we have 6 children (3 bio children - ages 8, 7 and 5 our adopted son aged 2 1/2, and our two foster daughters - ages 17 months currently and 7 months).

    My question is, how have other large families with a child with so many needs managed at WDW. My husband and myself will be with all the children and we have gone before we adopted our son but this trip is obviously going to be a bit different.

    Thoughts? Experiences? Anyone else with a child that had a feeding pump or other tubing - will I have time to get on and off rides with his equipment - I know they slow most of them but I'm scared of not making it on and off in time...

    Thanks so much - we are so excited for him that I'm already having dreams of his trip :-)
     
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  3. chloelovesdisney

    chloelovesdisney DIS Veteran

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    Many of the rides have wheelchair accessible cars, so you can just take him on in his chair with his equipment and tubing intact. Are you and your husband going to be the only adults? I guess one adult can wear the 7 month old while pushing the chair, and the other adult take care of the 17 month old along with the older kids. Maybe take a double stroller also for the 17 month old and 5 year old, and the 7 and 8 year old kids could each hold on to one side to help keep track of everyone.
     
  4. SixUnderSix

    SixUnderSix Earning My Ears

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    That would be cool if he could stay in his chair for some but I know some he can't...still going through the threads to see what all he can stay in chair for.

    He actually normally can wheel his own chair (he's AWESOME) but I know there is NO way he can do this all around Disney, he gets tired extremely quickly. I have a double stroller that the two youngest usually ride in, but I remember from a trip a while back how hard it was to buckle and unbuckle at each ride and then with a wheelchair on top of it, I'm just thinking it will be hard to ride with two babies and help manage the wheelchair too (the 17 month old doesn't walk - her and her sister both have Fetal Alcohol Syndrome from their bio-mom and have many delays as well).

    I like the idea of wearing a baby or two - that may help a bit. Around home, we usually have Jake in his chair and the two babies in a double stroller and I can push the chair with one hand and the stroller with one while my three older children walk.

    Do you think the 5 year old will need a stroller space? I saw you mention it and I know he's young but he hasn't been in a stroller in 3 years probably. I'm foreseeing a lot of baggage at the airport....lol. Because of the walking, do most 5 year olds need a stroller rest? Thanks for the input!
     
  5. ambiancetc

    ambiancetc Mouseketeer

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    Welcome to the boards! We have not done WDW with lots of kids but we HAVE done it with lots of equipment!

    1. You will receive a free double stroller rental for each park day. Technically, depending on how large your children are you could squeeze three in a pinch.
    2. YES unless your 5yrold is used to a LOT of walking or you take many breaks, plan on at least a rotation in the stroller.
    3. The CM's are AWESOME about helping you in and out of the rides. (they will NOT lift the child but did help get situated/buckle our other two so DH and I could take care of DS) We never felt rushed and since it was often a bit of an ordeal they encouraged us to just stay put and ride twice!
    4. DS had a feeding tube and O2 on the entire trip. We ran all the lines into a Line Tamer so all we had to do was grab the feeding backpack and the O2 canister bag and not worry about the lines catching on anything while we transfered him to a ride. They never restricted what he could have with him during the ride (but then again, he wasn't 40inch so only did the smaller stuff he did LOVE Barnstormer though!) This year he may also end up on IV fluids through his port. We'll just at that tube to the Line Tamer and I'm going to get a large bag (probably use a sturdy 31 bag I've been given) and put all the equipment into the one bag and pin the Line Tamer to the handle. We'll hook it on the back of his stroller so it will be just one bag to grab and transfer rather than three. You can find Line Tamers at: www.feedingessentials.com get the 42inch one!

    For the formula we'd fill his bag and bring a ziplock sandwich bag filled with ice. Once it melted we'd just ask for a glass of ice at any Counter Service restaurant and refill the bag and put back in the feeding backpack. For tube feedings we brought baggies with premeasured powder in them and an empty bottle. Again, we'd ask for free water, mix up the next batch and not worry about the "stock" going bad. We had a Quiver Keeper (also from feeding essentials) for the pre-drawn meds and kept putting a baggie of ice in the middle to keep them cool.

    Pace yourselves, MAKE A PLAN, learn as much as you can about the parks but once their, use it all more like a guideline then a "must follow at all costs". Oh, and don't miss Christmas at GKTW. We did and regret it! I'll keep in eye on this thread so ask me questions if you have them :) You're going to have a blast!
     
  6. TheRustyScupper

    TheRustyScupper Common sense is so rare, should be a Super Power.

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    1) If you are staying at Give-Kids-The-World, send me a PM.
    2) I can supply a lot of hints.
     
  7. Somer

    Somer Make-a-Wish Princess

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    Hi,
    My daughter has the same heart condition! Sometimes MAW will allow a nurse or nanny to go with you. You should ask MAW if they will allow you to bring an extra person for the help!
    When we went a few years ago, we didn't have any extra equipment except for wheelchair. This time we're also going with oxygen too and I'm a little worried:scared: but I'm sure it'll all turn out good :thumbsup2
     
  8. gilesmt

    gilesmt DIS Veteran

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    Hi, I have not taking a bunch but I have gone with many obsticles and as far as Disney you will be fine. I am legally blind, with kidney transplant and two knee replacements. My ex has a knee replacement and PTSD, our oldest dd has cerebral palsy with seizures, our youngest dd had ADHA as child and now is known to have BiPolor aspergers. I remember the trips that I had to lift dd fromw/c while blind, while ex tried to just get himself in, while younger dd would race off to another ride since she was tired of waiting. We always made out great, Disney never rushed us and we now look back and laugh at it all, and since then we all grew up, and we have added for a while a granddaughter who was born a preemie with needs for a few years but now is great.

    W/c as a stroller is a great option. MAW kids get the VIP treatment so I don't think it will be as hard as you think. I think it would be a great help to ask if you can get a nanny, or a nurse. Most times your 5 year old should be able to walk, on occassions you will get a 5 yo that won't, my granddaughter wouldn't until she was 7 but she was a preemie born 8 weeks early and always a little slower muscle wise. I would also start carrying the baby in a baby front or back pack now. Disney is a lot of walking, you will at least want to be use to carrying the baby in the pack long before you go.lastly I would be concerned that you have a plan incase anyone gets separated. I hear about tatoos that have all the identifiable information on them, temporary of course. Their are places on this site that talk about them.

    I hope you all have a wonderful time.
     
  9. Somer

    Somer Make-a-Wish Princess

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    I also wanted to say that if you're staying at GKTW, there is Sooo much fun to be had for little ones that you won't need to do full days in the disney parks!
     
  10. SueM in MN

    SueM in MN combining the teacups with a roller coaster Moderator

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    Seconding those who pointed out there is a lot of fun stuff to do at Give Zkids the World Villag.
    My niece just got back from a volunteer trip there and was involved in lots of fun activities for the families.

    I not have a few minutes right now, but just wanted to point out something that you may or easy be very aware of - I don't know what the laws are in your tSt, but it is possible you might not be allowed to bring the the 2 foster children out of state. Or, at very least, might need to get started right away with getting permission to tke them. I know in some areas that would require a court order, which might take. Bit of time to arrange.
     
  11. MSSANDRA

    MSSANDRA DIS Veteran

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    I was going to also point out that DSS very well may not allow you to take the little two foster babies. My friend had to jump through HUGE hurdles to get to take their then foster son and they were well on the way to adopting him! They ended up having to put him own his own insurance policy (which they paid for) as well as some other considerations I can't remember right now. It was a HUGE ordeal but they did get to take him.
     
  12. SixUnderSix

    SixUnderSix Earning My Ears

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    We have traveled with them out of state at least 10 times. In our state, you need permission from DHS and the parent and both of them are very obliging. We've had both girls since birth and they've never been with anyone else. They encourage us to take the girls everywhere we go and treat them just like family. MAW said we would need their birth certificates (which we have, permission from bio parents which we have, and placement papers which we have). Of course, nothing is final until it's final but it looks good for us to bring them.

    We've been to WDW before we adopted DS and brought previous foster children - it was FANTASTIC and the parents and caseworkers were great then too - here's hoping it goes just as well :-)
     
  13. SixUnderSix

    SixUnderSix Earning My Ears

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    I know we are SOOO looking forward to the Village - I think he will LOVE it.

    Also, thanks for the reminder about out of state travel. We have traveled many times with them for everything from family visits to vacations - their bio-mom and DHS worker are great about getting us permission. They've both been with us since birth. We've taken previous foster children to WDW too and have loved every minute of it :-) I feel so bad for foster parents who aren't backed up and have to jump through so many hoops to include their angels in things that they should be included in as part of the family :-(
     
  14. SixUnderSix

    SixUnderSix Earning My Ears

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    Oh I love meeting other heart mamas and a HLHS mama at that! I will see about the extra help but we were kind of hoping to just be us as a normal family, without nurses, if you know what I mean...lol.

    We've done Disney with 5 by ourselves before but not with 6 or with our sweet boy.

    Good luck with your extra equipment. Our insurance won't pay for a concentrator so we have to travel with our E tank - oh joy ;-)
     
  15. SixUnderSix

    SixUnderSix Earning My Ears

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    Wow - awesome info!!! Thanks so much. Heading to the website in just a minute...I bet I can find all kinds of cool things for him. We are on Peptide 1.5 right now so luckily I just have to ice it and not mix anything there. He doesn't do oral feeding at all.

    I want to get the line tamer just for ease around our city...that's fantastic!!!
     
  16. Betty Rohrer

    Betty Rohrer DIS Veteran

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    not sure where you are staying for MAW trip but from i have seen with our 2 MAW trips, the Villas at Give Kids The World could be hard for your family. ours only had 2 bedrooms, one with a king sized bed and second with 2 twin beds. living room as a full sized sleeper and there was a roll away bed in one closet and also a pack and play. something to check out with ages and size of your family.
     
  17. SixUnderSix

    SixUnderSix Earning My Ears

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    Wow, mama - you've had your hands full!!! My 8 year old was 8 weeks early and gets tired easily so I can relate to that...but I figure that we won't be moving at a crazy pace with 6 kiddos and one in a wheelchair..lol. We are not 'hurry' kind of people so hopefully our slow pace will accomodate our 8 year old and 5 year old.

    Last time we went we had our 3 bio-children at the time were 6, 4, and 3 and our two foster babies age 1 and 3 months and we did two double strollers...we may have to consider that again...lol.

    We've got kids that stay right with us (we have a system...lol) but we buy the safety tats every time too...just in case ;-)
     
  18. kalimom6

    kalimom6 Mouseketeer

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    We went in Dec 2012 for our daughters wish trip. Six kids, ages range from 10 down to a year and a half. And my husband and I. My husband and I had the king bed, our baby had the crib in the same room as us. The second bedroom had 5 year old in one twin bed, 10 year old on the other, and 3 year old on the rollaway, pushed against the wall. Both the 5 and 3year old beds had the rails that GKTW also provides. The 7 and 8 year old boys slept on the pull out couch in the living room. We all were comfortable and slept well. Oh, and a friend of ours traveled with 10 in their group for her daughters wish trip, and they just had both sides of the villa.

    Anyway, OP, like I just said, all 8 of us went almost 3 months ago. The only really long day was Sea World as that was my daughters wish. The rest were halfdays, while the youngers took naps, the others swam or explored the village with my husband or me, whichever wasn't napping.
    PM me if you need any ideas, advice, questions, etc as my mind is too tired right now to think :-)
     
  19. WheeledTraveler

    WheeledTraveler DIS Veteran

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    Since MAW trips usually fly, I wanted to mention that MAW is going to need to work with the airlines if your son will need oxygen in-flight. You probably already know this, but you might want to mention it to your Wish Granters if you haven't already. IIRC, the choices are usually an air-travel approved concentrator or airline-purchased oxygen during flight (with bottles delivered to GKTW; your supplier should know something about how to arrange that). I haven't ever traveled with oxygen, but I know it's something that can be extra complicated when flying.
     

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