Sarah's MAW PTR

Discussion in 'Pre-Trip Reports and Plans' started by sarsop524, Feb 17, 2012.

  1. sarsop524

    sarsop524 Mouseketeer

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    Well, I decided I might as well start this report now since Sarah got admitted this afternoon and I am doing nothing but waiting for her MRI tonight! She is sleeping right now, so I have time to at least get started!


    Not sure where to begin...Sarah is going to be 8 in May. She has quite a few different medical diagnoses, so I will list the big ones. She has 1p36 chromosome deletion syndrome, epilepsy, eosinphilic esophagitis, scoliosis, syringomyelia, hypothyroidism...and the list goes on! Sarah has a twin sister, Sophie, who is an awesome sister and helps take such great care of Sarah! Sarah has had numerous surgeries and way too many hospital stays. We are currently inpatient as she has had an increase in seizure activity and some other little weird things going on. She just had an eeg done and we are waiting for an MRI of her brain a little later tonight.

    During one of our hospital stays, one of Sarah's therapists talked to me about MAW. I had never thought much about it and really didn't think Sarah would qualify. She pulled up the website on her laptop and told me to fill out the online portion while she was working with Sarah just to see what would happen! That was in November, and we found out about three weeks ago that she was approved for a wish. I filled out that paperwork and returned it, and we got a phone call this week from our wish granter! After reading some reports on here, I didn't expect things to move so quickly! So, hopefully we will be home by Tuesday as that is when our wish granters are supposed to come meet us!

    I have spent so much time reading other people's reports to ideas for planning, and I am excited to start planning for us!

    I need to go back and read the instructions for posting photos...so those will have to follow!

    Kylee
    wife to Andy and mom to Sarah (wish kid) and twin sister, Sophie
     
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  3. nesser1981

    nesser1981 DIS Veteran

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    Awww, poor girl!

    I'm glad you started your PTR! Waiting for dates is so hard! But I'll tell you it only took us 6 months from applying to for the Wish to actual going on the actual trip. Hopefully things will move quickly for you guys!
     
  4. Moodyzblu

    Moodyzblu DIS Veteran

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    I'm here Kylee !

    Sorry Sarah is in the hospital and hope she gets out in time to meet her wish granters. :goodvibes

    Looking forward to your PTR. :thumbsup2
     
  5. roach3770

    roach3770 Earning My Ears

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    My wish child is also 8! We just got our dates last week and we are going in April. I was actually surprised we are going so soon. We had our first meeting right before Christmas! Keep us posted as you make your arrangements and hope you get home soon!

    Shawna
     
  6. blessedmom4

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

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    Hi Kylee, So happy you were able to get started but I am SORRY Sarah is in the hospital. :hug::hug: Come on by and visit our TR when you have time. :goodvibes There are lots of pics of the village and more to come. Just use the Table of contents to avoid the banter...
     
  7. sarsop524

    sarsop524 Mouseketeer

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    I swear I don't usually have so many difficulties...but wondering if one of you could tell me how to link this in my signature?!?!

    Sarah's neurologist is switching some of her meds, and we hope to be home MOnday...just in time to meet our wish granters Tuesday:cool1:

    Thanks! I will check out your reports later tonight when she goes to sleep...my girl is good at being demanding while in the hospital!

    Kylee
     
  8. sarsop524

    sarsop524 Mouseketeer

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  9. nesser1981

    nesser1981 DIS Veteran

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    Copy & paste the IMG codes in your post. :)
    [​IMG]
    [​IMG]

     
  10. sarsop524

    sarsop524 Mouseketeer

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    Thank you!! I will get it all figured out! Sarah is still inpatient. Unfortunately her labs are not improving yet, platelets down today and ammonia and liver function up. They took her off one of her seizure meds because they think it may be toxic to her now...hoping for some improvements in the am. She also had a few seizure spells today, so need to get the right combination of meds now! Still hoping to meet our wish granters Tuesday, not so sure now though:sad2:
     
  11. nesser1981

    nesser1981 DIS Veteran

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    Hugs to you guys! Lots of prayers going out for her, hope she starts to improve soon.

    Don't worry about not getting to meet with your wish granters. They are super happy to reschedule.

    We had to cancel our first meeting too because Keira had her tumor removed and had some complications and we were still in the hospital on the day we were suppose to meet them. I think we pushed back 3 weeks and we're still going on our trip almost 6 months to the day I contacted MAW after we were referred.

     
  12. Moodyzblu

    Moodyzblu DIS Veteran

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    Sorry to hear about Sarah and sending prayers ! :goodvibes

    Your girls are beautiful ! :love:
     
  13. sarsop524

    sarsop524 Mouseketeer

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    Thanks for the well wishes and prayers! Sarah got discharged last night, so we made it home in time to meet our wish granter tonight. We officially made her wish for Disney, so now we wait for that to be approved! When they asked me for some tentative dates they said it could be a year to a year and a half...so now we wait for it all to come together!!!

    I need to get better about using my camera to take pictures, I am so used to using my phone for everything! I will update more pics and keep you informed of our status!!
     
  14. nesser1981

    nesser1981 DIS Veteran

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    Awww good, I'm so glad you guys got to meet with your granters today.

     
  15. Moodyzblu

    Moodyzblu DIS Veteran

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    So glad Sarah is home and got to make her wish ! :goodvibes


    Hopefully it won't take THAT long !
     
  16. sarsop524

    sarsop524 Mouseketeer

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    It has been one week since our wish granters came to our house to meet us. Today I received an email from Make a Wish saying that they had received our paper work. The email said I should hear from them in the next few weeks! Can't wait to get dates and start planning...for now I will continue reading everyone else's trip reports!
     
  17. Moodyzblu

    Moodyzblu DIS Veteran

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    That's great news !! I'm excited for you and hope you get your dates real soon. :goodvibes
     
  18. Anderson05

    Anderson05 Mouseketeer

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    Found your report. Excited to see your planning and pictures. :lovestruc

    YAY for meeting her wish granters! Hope they got her meds figured out. Takes strong families to have kiddoes with health issues.

    Following along. :cheer2:
     
  19. sarsop524

    sarsop524 Mouseketeer

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    Just thought I'd write a quick note to let you know we are still here! I spend my nights when I can not sleep reading other people's trip reports so that I will have lots of good ideas when we get our dates and really start planning;) Sarah is doing pretty well, had a good visit at the endocrin this week to finally hear that her thyroid levels are where they should be...we have been adjusting synthroid doses for almost a year! This Monday we go to pick up her back brace for scoliosis...not looking forward to that. It is a providence back brace, she will not even be able to sit up when wearing it. For a girl who has struggled with sleep issues for years, I can't imagine her resting very peacefully in this:sad2: We are trying to avoid yet another surgery for this poor girl, so I will cross my fingers for the best!!

    Maybe the next time I update it will be with dates!!! Have a good weekend!
     
  20. Anderson05

    Anderson05 Mouseketeer

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    Thanks for the update! yay for getting her thyroid levels stable!! Its amazing how much one thing can effect a body so much. Hopefully she can pick out an awesome looking brace, or do something to make it pretty.:flower3: =) Poor kid, hopefully she will get adjusted to it and get some sleep. We'll keep our fingers crossed for no surgery also!

    Cant wait until you guys get your dates. When are you hoping to go?? :cheer2:
     
  21. sarsop524

    sarsop524 Mouseketeer

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    Gonna see if I have this photobucket thing figured out yet...

    Here is a pic of Sarah and Sophie last summer...
    [​IMG]

    Sarah's last hospital stay, this doesn't show it, but she LOVES pet therapy:)

    [​IMG]
     

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