Bella’s Very Merry WISH-mas Party ~ 10 Days of Dreams Come True MAW/GKTW Dec 3-10

Discussion in 'Completed Trip Reports' started by StefaniLyn, Dec 26, 2009.

  1. maroo

    maroo DIS Veteran

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    Great update!

    Something tells me that SC2 would have certainly met up with you guys! I am bummed that you couldn't meet him! But, you did get to sit up close - that rocks!

    I also enjoyed the CP so much!

    I am so glad you guys took advantage of the button and GAC so that you could catch lots of rides and attractions! :)

    Great update! I hope Bella feels much better soon and gets out of Club Med soon!
     
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  3. StefaniLyn

    StefaniLyn DIS Veteran

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    Thanks so much!!! Bella recieved your card last night. She says to tell Piper that she looooooooves that name! And she hopes she had a good time at Disneyworld too!
    Thanks so much. It's disappointing, but I just need to wrap my mind around a new definition of 'normal'. It will just take some time and adjusting. Hopefully our stay here in Club Med won't be an extended visit, but so far they have made little progress with Bella's feeds, so who knows? :confused3
    I enjoyed writing it. It has helped me remember better days. I'm working on another chapter today inbetween my freelance writing assignment and my school board reelection campaign questions. Both of those are due tomorrow though so they may need to take priority.
    Me too!:goodvibes
    It has ended the pain and anguish over eating but unforunately the tube feedings are now also causing nausea and vomiting. I almost feel sorry for the docs as they seem stumped too!

    The CP was one of the hilights of the trip for me and DGma. It was just one of those moments when I felt closer to God. Especially seeing SCC, knowing all he has been through with the loss of his daughter, and yet his faith is so incredibly strong and evident. Phenomenal.

    It is definitely worth making Bella happier, no matter how much I dread tube feedings again. My #1 goal has always been to make her happy and comfortable. I'm just hoping they can come up with a plan that will work for her. No luck so far, and we were originally planning on getting out today but clearly that won't be happening.
    I must try and get a copy of the CP cd. I didn't realize that they even had one as we didn't browse any souvenier shops afterwards in an attempt to get back in time for Mayor Clayton's Bday party. I wonder if one can be ordered online?

    Wow! to meeting George Hamilton. I hope we didn't miss any hidden opportunities to meet SCC in our rush to get out of there!!

    The close seats were definitely a bonus! I could literally feel the music moving through me, especially when they played those really long horns on the side (anyone know what those are called?). It was like I was sitting with the orchestra and surrounded by the chior.

    The magic button was amazing and I'm so happy that all my DIS friends gave me hints and tips for using it to it's fullest potential while we were there. Without all of you it would have taken us at least a day or two to realize the true advantages of 'the button'!

    Bella vomited this morning at a rate of 60cc's feeding. Her goal is 100 cc's so it is alarming that she is getting sick at just over half the rate they want her at. They just gave her some Zofran for nausea and she is in the bath tub now. After she gets out, I'm hoping she will take a nap so she can have at least 4 hours of continuous feeding at 60ccs. If she gets sick again, they will need to come up with another plan. We'll be here at least one more day. I also update her caringbridge website with more details if you're interested. It's www.caringbridge.org/visit/isabellagriggs
     
  4. p00h4me

    p00h4me Mouseketeer

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    Amazon.com has the CD. Just type in: Candlelight Processional and Massed Choir As Presented At Epcot

    I read Bella's caringbridge page tonight and am happy that she enjoyed the animal stories. So glad to hear you both get to go home tomorrow! :goodvibes:cool1::thumbsup2
     
  5. yinyanggirls

    yinyanggirls DIS Veteran

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    Stephanie, I'm so sorry that even the tube isn't solving the nausea. Poor Bella!!! Does she understand that the tube is feeding her? Could it be psychosomatic? She's certainly experienced some trauma.
     
  6. kayrosek

    kayrosek DIS Veteran

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    I've got to go back and read your post on CP but I wanted to jump on first and let you know I'm thinking about you guys. I'm so sorry Bella is still have so many problems. I will be praying the docs can figure something out soon.
     
  7. kdzbear

    kdzbear DIS Veteran

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    I know I haven't posted on your trip report. I sent Bella an ecard the other day and I have been following your hospital reports and pictures on FB. I love your candlelight processional update! We left about 3 days before that started. I hope Bella gets well soon. She is in our prayers! :grouphug:
     
  8. praisehisname

    praisehisname DIS Veteran

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    I'm so sorry Bella has been struggling. As a mom, I can imagine how hard this must be on you. :hug:

    Great update! I really enjoyed hearing about the CP! We didn't make time to do that this past December, and I wish we had.
     
  9. honeydiane1953

    honeydiane1953 DIS Veteran

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    I am so enjoying this trip report. I do not know what all this even does to a family All are effected. I had a son who committed suicide when he was 16 years old. That was in 1988 so I do know how that feels and words cannot begin to even try. Is this as far as u have gotten? I am not comp. savvy so I don't know if it's me or this is it for now as Bella is in the hospital. GOD BLESS YOU ALL.:littleangel::littleangel::littleangel::littleangel::littleangel::littleangel::littleangel::littleangel:
     
  10. Momofwishkid

    Momofwishkid DIS Veteran

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    Hi Stephanie, Im so sorry to hear that Bella is having a hard time. Best wishes that it all gets straightened out and she's feeling better.
    Great update. It sounds like the show was amazing and way to go on the up front seats!!
     
  11. sejejoemmiev

    sejejoemmiev Mouseketeer

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    Enjoying your TR so far...I just started reading it today. My DD(4) had a G-tube until this past December when it was finally removed!:cool1: So I know how you feel! Feeding DD(4) and getting her to eat was the MOST Stressful thing I have ever been through in my life. She also had a large ASD and had surgery to repair along with a few other problems. I wish someone told me about an inpatient program to teach her how to eat!! All we have here is outpatient OT or SPT appts that she would go to once a week. I never thought the day would come when she would finally eat! We are taking her to WDW for her 5th birthday in August to Celebrate her accomplishment! Thanks for sharing!:thumbsup2
     
  12. pipersmom

    pipersmom DIS Veteran

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    Just checking in before we head off to Club Med, I hope things are continuing to go smoothly for you guys at home..I'm going to check your caring bridge site here in a second.. :hug:
     
  13. that's nice

    that's nice DIS Dad #330

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    Awesome how you guys got to sit up front for CP! :woohoo: Love the pics of you guys in front of the Christmas tree. I hope you were able to make it back in time for the Christmas Party!!!!! :scratchin

    I was following along on your caring bridge site but while away I wasn't on the computer much so I didn't post. Sorry Bella had to go through all of this but it does seem like she is doing better.... like being able to drink OJ. I know there is nothing harder for a parent than to feel helpless when your child has health problems. We are still praying for you guys and hopefully she has turned at least one corner. :)
     
  14. fnrsgrl

    fnrsgrl Mouseketeer

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    Hi! I have just recently signed on to read your wonderful trip report, and have been touched and amazed at Bella's story and how much she has already made it through. When I read about her current situation, it brought tears to my eyes--how sad when she has worked so hard! All that said, I just wanted to let you know that I have been praying for Bella, and will keeping praying for her, that you and her doctors are able to find a comfortable solution for her. You have a truly amazing family!
     
  15. StefaniLyn

    StefaniLyn DIS Veteran

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    It's just before 5 am here and Bella woke up a few minutes ago vomiting with her tube feeding. She's congested because of a slight cold and I think that was the cause. I had to shut off the feeding pump, clean her up, change the bedding, put her back to sleep, and restart the feed. Now I can't sleep :confused3and since this seems to be my only free time this week, I wanted to use it to catch up here on my favorite DIS boards.

    We were discharged last Friday from the hospital and Bella came home with an NG tube (feeding tube in her nose) for feedings at nighttime. Her rate can't go any higher than 60ccs per hour so she still needs to consume 600 calories orally during the day. We have split it up into 4 milk snacks and she drinks them incredibly well. In fact, for the first time ever she is able to join her friends in the lunchroom at school. With the exception of tonight, her tube feedings have gone wonderfully as well thanks to regular doses of Zofran, an antinausea medication.

    After much contemplation, we have decided to go ahead with surgery to place a g-tube on Monday, March 22nd. It will be her 8th major surgery and she is not even 6 years old. She continues to amaze and inspire me with her strength. Although we know this is the right choice for Bella, it's still not an easy one.As always, I will update her caringbridge website during her surgery and hospitalization. We anticipate another 3-4 day stay at Club Med (tee hee hee - Amanda I just can't help but giggle over your nickname for hospitals) so long as the surgery goes smoothly. Please keep Bella in your prayers during this time.

    Thanks. I will have to check that out next time I earn enough Amazon points to get a gift card!

    Bella has since asked me to read her the "chickens story" as she calls it, several times since her return home. Thanks again!!


    I was hoping we could do all feeds overnight, but her body just can't handle it. Anything over 60 is causing her to vomit. She does understand that it's feeding her and has expressed her preference for tube feedings over oral feedings. I don't think it's psychosomatic, in fact her doctors have suggested that her GI tract cannot process large amounts of food at a time and that was what was causing her blood glucose spikes as well as the nausea at a rate higher than 60mls/hr.
    Thank you so much! The docs certainly haven't figured Bella out completely (and probably never will!) but they seem to have come up with a plan for now.
    Thank you so much for your card - It was so sweet! You'll have to catch the CP on your next Disney trip. It was amazing!!!

    We'll be back at Children's for surgery on Monday. Hopefully once they place the g-tube and Bella is consistently getting the bulk of her calories at a slow rate overnight she will start to gain weight and get healthy again. Thank you for your prayers and support!

    It is hard, but I try not to feel sorry for myself. After all, it is Bella dealing with all the crud, I just have to clean up the messes :rotfl:

    I am happy we made time to do the CP dinner package. Although it took a lot of time away from touring Epcot, it was truly a once in a lifetime amazing experience!

    I am so sorry for the loss of your son. I cannot even imagine the pain you must continue to feel. You and your family are in our prayers.

    Unfortunately, this is as far as I have made it in our trip report. Due to Bella's declining health and difficulty with meals over the past couple of months, my time on the DIS boards has been limited. And sadly, it's been difficult for me to find the inspiration to write about happy times when things have been so miserable. Add to that the loss of my beloved pictures and voila - you have a slow going trip report. I'm hoping to get back on track once things start to normalize around here after one more stay at Children's Hospital next week for Bella's surgery. Thanks for reading along!


    Thanks. Bella is doing okay for now, and once she recovers from her surgery I think she'll be doing even better.

    The seats were amazing. I loved having the trumpets literally blaring in my ear!

    Congratulations to your DD and you for having her tube removed! That is such a huge accomplishment, especially considering you were able to do it with just OT and ST! It takes a very dedicated mom and family to transition from a g-tube to oral feeds after so long! And what a great way to celebrate too!!!

    We actually tried a local inpatient program twice (two weeks each time) before going to Baltimore for KKI's program. I really think it just depends on your medical team as to weather they recommend feeding programs or not. Bella never progressed with ST and didn't qualify for OT so an inpatient program was really her only option. And even after 8 weeks inpatient, she could only eat pureed food at 4 years old. Her aversion is one of the worst they have seen at CHW.

    Again, congrats to your DD on her g-tube graduation!

    Oh no! Why are you off to Club Med again? Darn it I hate it when I get so far behind on TRs and PTRs. I need to go take a look at your thread. I hope everything is okay with Piper and you!

    Things are going smoothly at home (well, except for tonight of course!) and we have a good plan in place. I'm just learning to redefine 'normal' and accept that tube feeding may be a part of our lives longer than I had hoped!

    Hey Tim! How's it going? I sure have a lot of catching up to do on your thread as well. Sorry I've been AWOL over there!

    I know you know how it feels to be in my shoes :hug: Thank you for the prayers. We just have one more big corner to round on Monday with surgery and then we should have a long stretch of smooth sailing with tube feedings for a while. At least, that is what I keep telling God I really need right now, lol. I will leave it in His hands.


    Thank you for your prayers. I can honestly say that Bella is an inspiration to me and our entire family. What she has gone through really sucks, but she's an incredible kid and we are so blessed to be her parents. She will find a way to overcome this latest obstacle, just as she has anything else that has ever gotten in her way. That is why I call her SuperGirl!
     
  16. kimmylaj

    kimmylaj DIS Veteran

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    will definitely keep bella in my prayers. putting our kids in surgery is so hard. mia has had 2 surgeries i cant even imagine 8. prayers for mommy too:hug:
     
  17. StefaniLyn

    StefaniLyn DIS Veteran

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    As fast at my Tinkerbell pimped out GPS would take us, we headed back towards GKTW. Hoping to make it in time for Mayor Clayton’s birthday party! And we did! We did make it in time for the party!party:

    Unfortunately. I have no pictures of the party. That’s right none – not a single one. :sad2:And this time I can’t even blame it on the stinkin Flash Drive Fiasco. I have no pictures because I was too busy pouting. Ugh. I’m such a baby sometimes.

    We made it back to GKTW in plenty of time. First stop was our villa where we found 3 plush Mayor Clayton dolls awaiting our return. In a hurry to get to dinner and then Mayor Clayton’s Birthday party, I attempted to quickly feed Bella. My first mistake was trying to rush. She had a terrible meal. Lots of screaming, crying, and then she started vomiting. A lot.:headache: Unfortunately, she threw up so much that I needed to make more food for her and feed her again because I knew she had vomited almost her entire meal. Double Ugh.:sad2::sad2: This was not how I wanted to kick off Mayor Clayton’s birthday. I was really looking forward to the party!

    After feeding Bella essentially twice, we headed over to the Gingerbread House for the rest of us to eat dinner. But I was in no mood to eat after Bella’s meal so I just sulked and let Bella fall asleep on my lap for a little while. When the rest of the family finished eating, we woke Bella from her slumber and headed towards the party. It had already started, but the girls insisted on a ride on the carousel first. I believe I did have a picture of the carousel ride, but that was lost in the FDF’09.

    As I reflect on this evening of our trip, I start to get really mad with myself. :mad:I was upset about Bella’s meal but instead of letting it go, I let it get to me and in my sour mood, I just didn’t have any fun. Even worse, my mood rubbed off on the kids and I know they didn’t have as much fun as they should have at Mayor Clayton’s Birthday Party.

    After a ride on the carousel, we walked towards Julie’s Safari Theater where most of the Birthday party activities took place. There were games to play, music to dance to, and more yummy food and snacks to eat. The girls enjoyed the games and toys. Bella especially loved a giant connect 4game – one of her favorite games of all time! Kennedy had a lot of fun with hula hoops. The kids were able to make birthday cards and pictures for Mayor Clayton as well. AJ, unfortunately, was in a mood. I take full credit for her mood as she tends to take after me. Geez – they really need a smilie for “kicking myself for being such an Debbie Downer’ lol! She didn’t want to dance and felt the games were too babyish. She did enjoy some Dippin Dots and other snacks though.

    After about an hour, it was announced that Mayor Clayton was on his way and when he arrived in his super cute Mayor-mobile golf cart thingy, we all jumped out and shouted “Surprise!!!” Then we sang Happy Birthday to him. Kennedy and Bella had fun with the surprise party but I think we were all exhausted as they started to ask about going back to the villa soon after Mayor Clayton’s arrival. As I was still pouting about Bella’s terrible meal, I didn’t encourage them to participate in the fun any further. We headed back to the villa.

    Our original plans called for a possible return to Epcot for Illuminations if we had enough time. I didn’t even bother looking at a clock to see if we could make it. We were exhausted and definitely not going anywhere else this evening. We quickly put PJs on the kids and hustled them off to bed. I placed an order for delivery from Katie’s Kitchen aka Boston Market, started a load of laundry, and began transferring my digital photos from the camera memory card to my flash drives. I was quite proud of the collection of photos I was accruing.

    Once Katie’s Kitchen arrived, I sat down and enjoyed my meal. A little Boston Market always makes everything seem a better. With a full belly, I put myself to bed, praying that tomorrow would be a better day for Bella’s meals and the weather!

    UP NEXT: Act 4: Scene 1 - The Wish Kid Goes Fishing
     
  18. praisehisname

    praisehisname DIS Veteran

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    How's Bella doing now? Was she able to sleep a bit more without vomiting?
     
  19. Momofwishkid

    Momofwishkid DIS Veteran

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    Great update Steph. Im glad you mad eit back in time for Mayor Clayton's party but sorry Bella had such a hard time with her meal. Dont feel to bad about being in a mood Im certanly guilty of it a few times on our trip. I have been following Bella's caring bridge site and am so happy she is doing a little better with the tube and is able to enjoy a little food.
     
  20. MagicMomentsMom

    MagicMomentsMom Mouseketeer

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    sorry to hijack your TR--Wishing Bella the best of luck with her surgery next week--my DD has had a gtube and a nissen since she was 5 months old--she just turned 5 in January and still has her gtube. She has similar issues with the retching (she can't actually vomit any longer because of the nissen) she cannot take any moderate or large volumes of feeds--it makes her retch, they dx her with Delayed gastric emptying, but as of right now she isn't on meds. She was on reglan for a long time :( she has severe oral aversions but is in feeding therapy locally and she's come a long way, she now does eat some by mouth, so the feeding therapy has helped out a HUGE amount for her.

    HUGS
     
  21. jessica52877

    jessica52877 DIS Veteran

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    Enjoyed the update. I am sure I can be in quite a sour mood sometimes too.
     

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