Ashley's MAW PTR Cruise May 9th-May 13th, 2010

Discussion in 'Pre-Trip Reports and Plans' started by Mtopher4, Feb 12, 2010.

  1. Mtopher4

    Mtopher4 DIS Veteran

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    Hi,
    I'm Lisa, Mom to make a wish kid Ashley age 5 and Jessica her twin sister and Christopher age 8. Last time I was on his board I was gatherig valuable information or our Disney World trip for Sept. 2008.

    After trying to concieve for 4 years and using ovulation meds we switched to injectables and got Topher and then tried for number two for a year and then did injectables and IUI's and after 3 misscarriges... Finally I was Pregnant :-) Not just one with Twins :-)

    When I was pregnant with my girls I was high risk and had many ultrasounds and not one caught anything.
    Ashley was born with Apert Syndrome. You can see her pics at www.apert.org/bock . She just finished her 18th surgery and has more to go.
    You can read more about Apert at www.apert.org.
    Apert is fairly rare only occurring in 1 in 160,000 to 200,000 births

    I'll go back and see how to post pictures. We are now waiting to see what dates we will be going on the cruise..Can't wait .... Would LOVE some tips and advise..
    Than you :goodvibes

    UGH I just typed Ashley's whole story and the computer lost it :(

    Anyway..It was horrible not to be able to enjoy the birth of my twins. Both were born and taken to the NICU..C-section and 35 weeks gestation. My Son had been an emergency C-section (Meconium pneumonia).
    Ash actually got to come home with me from the hospital but Jessica had to stay for 11 days. My son stayed for 11 days after his birth too.
    I treated Ashley like a doll for the first month of her life, until I met another child with Apert. She had 9 surgeries that year. Jessica stopped breastfeeding because I was away from her too much. Christopher started having huge temper tantrums. My house has been chaos to say the least. With all the therapies, etc...We live in Houston and travel to Dallas for all Dr. appointments and surgeries because that is the place to be when you have Apert.
    Ash has:
    Sleep apnea..Obstructive and Central, Hydrocephalus, Chiari Malformation, Fused skull sutures at birth, fused fingers and toes, PDA, retruded midface, sub mucosal cleft palate with bifid uvula, constant Sinus infections, Asthma and a severe allergy to gelatin.
    She has had 18 surgeries..

    Some of these below were combined so to try to limit the number of surgeries she will have in her lifetime.
    2 cranial remoldelings, 1 orbital advancement, endoscopic 3rd ventriculostomy, external Ventrical drain, VP Shunt, 3 strabismus surgeries, 2 sets of ear tubes, 2 tonsil removals (Yes they did grow back :(, 6 finger separations with skin grafts, 1st stage toe separartion with skin grafts, sinus surgery.
    More surgeries this year will be 2nd stage toe release and RED Midface advancement.
    She was very delayed..even more noticeable having a twin sister..not able to hold up her head that first year of life, not sitting up until 18 months, crawling at 20 months, not having any teeth until 24 months, not walking until 3 years old and still isn't potty trained. I feel like I have missed out on so much with my girls. I hate to say it but the first two years of their lives I was in survival mode. I wish I could go back and redo it and enjoy it more :(
    Our family is so looking forward to getting away and being able to create some happy memories :-)
     
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  3. Mtopher4

    Mtopher4 DIS Veteran

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    [​IMG]
    Jessica, Christopher ad Ashley Dec. 2009
     
  4. Mtopher4

    Mtopher4 DIS Veteran

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    [​IMG]
    Ashley at birth
    Are thesetoo big? They are 800 x 600?
    [​IMG]
    Testing thumbnail of Child life
    [​IMG]
     
  5. Mtopher4

    Mtopher4 DIS Veteran

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    Got the thumbnail thing figured out :-)
     
  6. Mtopher4

    Mtopher4 DIS Veteran

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  7. cmp1111

    cmp1111 DIS Veteran

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    Wow, I'm so glad you're getting to go to WDW. What a lot to deal with. :hug: My twins were born at 32 weeks, so we had a bunch of NICU experience, but thankfully now they are both well.

    I'll be looking forward to hearing more plans.
     
  8. Mtopher4

    Mtopher4 DIS Veteran

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    Thank you :-) Glad to hear your twins are doing Well :-)

    The suspence (sp?) on waiting for the dates is killing me :-):tinker:
     
  9. Deb T.

    Deb T. DIS Veteran

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    Just wanted to pop in and say that I like the full-size photos better than the thumbnails. Your daughters and son are precious! I know you will all have a fabulous time on your MAW cruise! :goodvibes
     
  10. Mtopher4

    Mtopher4 DIS Veteran

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    Thank you Deb :-) I see you have been on several cruises.. Any advise?
     
  11. Mtopher4

    Mtopher4 DIS Veteran

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    Ok I had to post this picture bigger :-) This was taken at Medical City Dallas in the Child Life Dept right before Ashley's surgery in Jan. It's amazing how quikly they learn exactly where all ths real Dr. Stuff goes. Child Life gave her a Dr. kit full of real Dr. stuff that she uses to play Dr. on her bear and dolls.It's so cute. She also has her pulse ox and suction machine she plays with too.
    [​IMG]
    [​IMG] waiting for surgery after getting some goofy juice aka versed
     
  12. Mtopher4

    Mtopher4 DIS Veteran

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    :upsidedow
    I'm going crazy... waiting..waiting....waiting for them to give me some dates for the cruise to choose from.

    I'd like to go before the end of May. Hoping it's not too hot but not too soon because I'd rather it be a little warmer.
     
  13. pipersmom

    pipersmom DIS Veteran

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    Hi, Lisa! Not sure why no other wish families have found your PTR, but there are a bunch of us hanging about. :goodvibes: Your girls are very cute (as is your son!), and I can only imagine what you've gone through with Ashley, she's certainly a strong little girl to go through all that (as is her Momma!). I'm excited you're going on a cruise, and hope you'll post a TR when you're done..I tried to talk Piper into a land/cruise combo, and she wasn't having it, lol..it's straight WDW for us, which is great also. Have you checked out the wish trippers thread in the disabilities forum? There are a ton of us over there also. Anywa, keeping my fingers crossed that you get dates soon, and looking forward to following along!
     
  14. Mtopher4

    Mtopher4 DIS Veteran

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    Thank you Amanda. I was actually looking at your MAW PTR the other night when the board closed for two hours for an update :( Your daughter is beautiful. I'm going to ask our local MAW if we can change it to the land and sea option but I have heard they don't offer it here :( I KNow Ashley would love to eat a meal in the castle :-)
     
  15. pipersmom

    pipersmom DIS Veteran

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    You're welcome :) I know some chapters offer it and some don't. Maybe you can tack on a night once you get back into port and go? I do know some chapters will let you extend the trip on your own dime and still pay for the return flight, might be something to think about. :goodvibes:
     
  16. Mtopher4

    Mtopher4 DIS Veteran

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    They are looking into dates April 18th, May 9th and May 16th :-) They said their chapter doesn't do the land and sea :( But she is asking about adding a couple of days at our cost.. I'm praying
     
  17. Mtopher4

    Mtopher4 DIS Veteran

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    I'm worried about getting sea sick on the cruise. This is our very first cruise. Any Advise?
     
  18. pipersmom

    pipersmom DIS Veteran

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    I hope they'll let you extend Lisa, will keep my fingers crossed for you. As far as seasickness, i've never cruised either, but I have heard that seabands are wonderful. I think they're relatively inexpensive also.
     
  19. Mtopher4

    Mtopher4 DIS Veteran

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    Good idea on the seabands :-) I heard today a couple years ago our MAW chapter would not approve extentions.... I hope they do for us .. My fingers are crossed ;-)
     
  20. yinyanggirls

    yinyanggirls DIS Veteran

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    Hi Lisa! I'm glad you are leaving replies on other threads so more people will find you. ;) Your family is so sweet. I'm curious, since your kids are older than my Tessa (4), how do the siblings handle having a sister with fairly severe needs? My oldest "looks" like a typical 8 yr old, but it is obvious to see that she is not, and yet my youngest has yet to ask why. She kind of treats her like a younger sibling or just does her own thing. With the Wish Trip coming up I have mentioned a few things to her about Phoebe being "different" (no mention of life threatening conditions, I think she would assume it means impending death). I hope you don't mind my asking, but I am trying to be prepared to help her understand her sister.
    Also, I noticed that there is one pic of Ashley standing with the other girls, and then saw the pic of her on the bus. Does she use a wheelchair full-time or just for convenience if she tires out? Make sure you check out the disABILITIES main page because there are helpful hints on using chairs at WDW (maybe cruises too?) and other special needs tips.

    As for sea-sickness, Tessa gets car-sick. Never had a problem in an airplane, roller coaster or anything else, so I don't know if she would be sea-sick. Anyway, we got some great tips from people here to try the Sea-bands and they seem to have worked 100% on our recent driving trip (4 days of driving). A pregnant friend of mine also recommended Preggie Pop Drops, candies, that you can get at Babies R Us. I think they are ginger and are supposed to help reduce feelings of nausea. I had some for Tessa on the drive but I don't think she needed them with the bracelets on. Oh, we found the bracelets at WalMart in the pharmacy section.

    Seems like you have some great dates to choose from. Will you have to take the kids out of school?

    I hope your chapter lets you extend your trip.
     
  21. Momofwishkid

    Momofwishkid DIS Veteran

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    Hi Lisa, Im so glad you posted so I could find your PTR. Your kids are just adorable. A cruise sounds great I cant wait to hear all about it and I hope they approve your extension unfortunatley my chapter dosent. Cant wait to hear more!
     

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