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

[kayrosek]

Thinking about you and hoping everything is okay.

 

[that's nice]

I'm here too Stefani.

I hope everything is OK.

 

[praisehisname]

All caught up again! I got a little teary-eyed reading about the character meet. That was so sweet how much time the girls got with them!

 

[Chelley00]

My trip report is done. Your turn!

 

[pipersmom]

Hoping everything is going well and you're just busy, hon!

 

[StefaniLyn]

I promise I didn't fall off the face of the Earth. I'm still here. Just not here . . . on the DIS . . . where I would rather be. Instead, I'm here, at home, or at Children's Hospital or at school. Here lately I've been dealing with Bella's challenges, appointments, and the other stuff that keeps me busy all day long. Bella has recently been struggling with meals . . . really struggling. To the point where we need to make some important and difficult decisions that I would rather not make. I posted the deatils on Bella's Caring Bridge Website. But the long and short of it is we are looking at possibly tube feeding for Bella - something she has worked so hard to avoid.

Next week Bella will have a procedure and be admitted to the hospital for at least 3 days. They will place a tube in her nose that goes to her stomach and trial tube feeding before surgically placing a more permanent one. Tube placement would mean another surgery and another hospital stay. Bella has lost weight, fallen behind in school, and is generally miserable for at least 6 hours each and every day because of her feeding difficulties. Her blood glucose continues to spike after meals despite being on 3 medications, dietary changes, and trying every other far-fetched idea the docs have thrown at us.

We(everyone in our family, not just me) are frustrated and exhausted - mentally, physically, emotionally. I have been feeding extra meals to put weight on Bella, driving back and forth to Children's for appointments, and helping out the teacher's assistants at school with meals. Unfortunately, that leaves little time for the DIS. I apologize for my absence and lack of posting. And while I've tried to keep up with other threads, I must admit that I have fallen behind not only on my own, but everyone else's as well. On a positive note, 3 days in the hospital next week should allow me to catch up a little. Thanks to all who have posted their concerns.

We really loved the Kim Possible Missions too! We did three countries (Mexico, Germany, and United Kingdom) and next time we go back we will definitely do more. We didn't do China it looks like fun

The KP mission in China was great. I hope to do many more on our next Disney trip too!

Hey hon, just got all caught up. I'm sorry you all have been having to deal with so much lately and hope revisiting your trip is helping at least a little bit. I was just telling Pamela on her thread that reading your TRs is really amping up the excitement for Piper and I. It looks like you had a great day at Epcot..I hadn't decided for sure on whether to do Kim Possible, but I think we will do at least one! Maybe set it up to end in Norway in time for our Princess lunch ADR. Hoping everything is going well for you this weekend, and looking forward to keeping up more now that we're home!

Wow! You guys are leaving in like 2 days!!!! I feel terrible not knowing what is going on in your TR. It goes so fast over there. Glad to hear Piper is home and doing better!

You can definitely coordinate a KP mission to work with your schedule. Just let the CM at the recruitment center know what time and place you want to end before s/he swipes your ticket. Have a blast! I can't wait to see pictures and hear all the details.

Hi Stephanie!

I am really enjoying reading your trip report. My DH and I were at WDW at pretty much the same time as your family. Your girls are gorgeous! It's great that Bella and your family had such a wonderful time despite the ups and downs and feeding issues. My cousin (who is now 17), had the similar esphogeal issues. Due to her poor nutritional intake, she has always been on the smaller side, and has had to take growth hormones. However, in her older age, she has grown (well not much in height! ), to do very well. She grew to like gymnastics, and is now probably much stronger then me (I'm 13 years older!). So hang in there, and I hope that your Bella will do just as well!

Can't wait to see more of your trip!
P.S.....wasn't Kim Possible awesome? My DH and I did several "missions" in England prior to our dinner at Rose and Crown. I want to go back and do all the countries, ha ha!

I think Bella will be very similar to your cousin as she is already small in stature and starting to take an interest in gymnastics. I just home that one day Bella will be able to eat normally. Unfortunately it looks like that won't happen anytime soon.

KP was awesome. I would love to try some in other countries. It was so nice to have it coordinated with our reservations as well.

Checking in for an update (gentle nudge )

Missing you, sweetie!! Everythign ok?

I miss you too Liesa. Sorry I haven't been able to keep up with things. I hate it when life gets in the way of my DISaddiction. Things unfortunately are not really okay. I wish I could say they were.

just popping in to say i am thinking about you

Thanks

Thinking about you and hoping everything is okay.

Thanks. Sorry for the delayed response. Things have just been so crazy around here that I can't keep up with everything. Hopefully that will be resolved in the near future.

I'm here too Stefani.

I hope everything is OK.

Thank you Tim. Are you still here? Or are you in Disney? I have to head over to your TR and check your dates. I know your trip is sneaking up really quick. Do you have dates for the Wish Trip yet?

All caught up again! I got a little teary-eyed reading about the character meet. That was so sweet how much time the girls got with them!

It was one of our first magical Disney moments. I hope to share more with you soon!

My trip report is done. Your turn!

I still have a few installments to read on your TR. I promise to get back to reporting on mine once things get back to normal around here. Unfortunately, that could take a month or so. Hopefully the mods won't move it over to the 'dead TR zone" before I get around to that.

Hoping everything is going well and you're just busy, hon!

Thanks. It is a combination of busy, exhausted, depressed, and a little of everything else too. Thanks for checking in on me!

 

[kimmylaj]

please take your time and do what you have to do for your family we will be here waiting whenever you feel like it.
i am so sad to hear that bella is having such a tough time. she is such a fighter and i am sure that this is tough for all of you. i will keep you in my prayers

 

[that's nice]

Stefani-
So sorry that Bella is going through this. We will be here waiting for you and if you need to talk or just blow off steam we are here to listen.

 

[pipersmom]

Aww Stefanie..I was afraid you were going through some stuff, I wish I had been wrong! I can't blame you for being tired, frustrated, and depressed, I think any of us would be. If you need an ear, or Bella might enjoy mail from the world, just let me know..I'll pm you, actually..

 

[All7OfUs]

AWwww... Stephanie, We are all here for you to vent or process or talk- whatever- if you need to!! I hope you feel this is a safe place to come and share, even if it's not all good news.

Know we are all praying for you- even now.

WE love you!!!

 

[kayrosek]

So sorry to hear that Bella is struggling so much. You will all be in our thoughts and prayers.

 

[StefaniLyn]

I just wanted to stop by and update everyone on Bella. We're at Children's Hospital right now for a couple of days. She was admitted after an endoscopy yesterday. During the procedure, they also placed an NG tube and are now trialing tube feeding with her before we consult with surgery to consider surgically placing a tube. So far, things are going pretty good. She hates the tube in her nose but sadly prefers it to actually eating. It looks like we will be here until tomorrow afternoon sometime. If you are interested in the details, I have updated her caringbridge website. https://www.caringbridge.org/visit/isabellagriggs
There is also a link in the latest journal entry where you can create and send Bella a card (very similar to what they do at Piper's hospital if you keep up with that PTR). The cards and guestbook entries really help to lift her spirits and are greatly appreciated.

While we're staying here at Club Med (sorry, I just had to steal that from Amanda) I have been working on an updated to my TR believe it or not and may actually get a chance to post a new chapter this evening!

Thanks to all of you for sticking around through this lull in the action over here on my TR. Your support through all of this means the world to me!

 

[pipersmom]

Hey hon...have sent a card and guestbook comment, but wanted to let you know we're thinking about you! I'm glad it's at least looking like a short stay!

 

[Chelley00]

Thinking of you guys. I'm so sorry for what you are going through and hope you get to go home soon.

 

[StefaniLyn]

With just 45 minutes until Candlelight Processional showtime, we decided to head back to World Showcase. I was unhappy that we had spent so much time crisscrossing Epcot because of the CP tickets, but found it to be a blessing in disguise as we were able to cross two more items off the Future World list in the process. As we walked towards the entrance to World Showcase, we listened to the joyful sounds of D’Vine Voices singing inspirational Holiday gospel music. It was at this time that Kennedy decided she was going to jump out of the moving stroller to watch the show! I nearly ran her over! As she knows better than to do this, I sat her down on a bench and gave her a time out while the rest of the group continued on. It was a good excuse for me to catch a solid 8 minutes of the show. Awful mom that I am, I made Kennedy face the other way so she couldn’t watch, but she was able to listen.

With her time out over and a promise to never jump out of a moving stroller again, we tried to catch up to the rest of our group. We found them waiting in line for the Friendship Boat. The boat arrived quickly and we enjoyed a leisurely ride across the lagoon. Honestly, we likely could have walked faster, but it was nice to be off our feet for a few minutes. We walked left and almost immediately saw a loooooooong line that stretched all the way from Japan to the American Gardens. I was hoping for preferred seating with the GAC so we walked all the way up to the American Gardens instead of joining the line.

I approached a CM and asked if that (pointing to the ridiculously long line we had just passed) was the line to get in. He laughed and said “no, those people are actually waiting for stand-by tickets for the 6:45 show !!!” Yowzas! The 5:00 hadn’t even started yet so those people were in for quite a long wait. I know now that there wasn’t a chance of seeing CP without reserved tickets so poor service or not, I was glad we chose to eat at Nine Dragons that afternoon. The CM asked to see our tickets which we then discovered were actually stickers that we needed to wear. After applying our stickers, he let us in to the Amreican Gardens Theater.

The theater was had many people and at first glance looked nearly full. However, it didn’t take long to realize that the people were just spread out all over the place with many small gaps in between. I wish they had made people move all the way over in their row as I’m certain they could given many more people the opportunity to see the amazing show.

Our group was directed to the way back center of the theater. Even though it was in the middle, it was soooo far away! I decided I needed to take a chance here so I left the group and approached a CM dutifully guarding a blocked off section in the front, showed him our GAC and asked if there was any preferred seating for a Make A Wish kid. There was a ton of space in the blocked off front rows and I was hoping for those seats. I was denied as the CM said the area was reserved for families of CP members, the band, and guests with visual or hearing impairments. Wait a minute, that is us!! For the first time ever, I was happy Bella was hearing impaired! I told the CM of Bella’s hearing impairment and he granted us access to the reserved seating. I quickly called DH and told him to come down.

While I was waiting for them to join me, I had to follow through on a promise I made to Maroo. I casually asked the CM if anybody was ever able to meet the guest narrator. I was hoping maybe, just maybe, we would be able to say HI to Steven Curtis Chapman. Unfortunately, the CM said he’s never seen it happen. He said all guest narrators are closely guarded while being escorted on and off stage and they generally need to rest in between shows. Pushing my luck, I then flat out asked “Do you think they would make an exception for a Make A Wish kid who is a huge fan?” No. Sorry m’am.

We were seated in the middle of the front section of seats on the far right hand side. And while we wouldn’t be able to meet Mr. Chapman, we sure did have a great view of him for the show!

The Candlelight Processional is one of the most amazing and poignant musical experiences of my entire life. To even begin to describe it in words would not do it any justice. It was mind-blowing, emotional, touching, and blissful. Steven Curtis Chapman has a beautiful voice and listening to him retell the Christmas story was truly a once in a lifetime experience. I was fixated on every word, every note, and every action on the stage in front of me. We were directly facing the sign language interpreter and watching her was a show in itself. If you are ever in WDW during Christmastime, this is definitely a DO NOT MISS event!

The girls and DH enjoyed the show as well, but I think this part of the vacation was truly for DGma and me as we both have a deep appreciation for music and theater. We were both literally moved to tears on several occasions. I wish I had more photos of the Candlelight Processional to share with you, but I was truly so engrossed in the show I didn’t think to take many. I do have these two close ups I took of Steven Curtis Chapman while videotaping however.

As the CP drew to a close, I noticed that AJ and Kennedy had drifted off to sleep. We woke them up and quickly exited the theater with the rest of the masses. Hoping to make it back to Give Kids the World Village in time for Mayor Clayton’s Birthday Party, we stopped only for a quick photopass picture at the American Christmas Tree before heading back into Future World.

and another family photo near France.

As we re-entered Future World, another Photopass photographer caught Grandma’s attention and she requested we have to have some pictures in front of this tree. Isn’t it just so beautiful!

​

We gave Bella a choice of one last ride in Epcot and she decided it would be Test Track! So using our GAC, we skipped the line and went up the back entrance. It was just as much fun the second time around - maybe even better because it was in the dark!!

We headed back to our car and drove as fast as we could back to GKTW in an attempt to make it in time to celebrate Mayor Clayton's Birthday!!!

NEXT: Act 3: Scene 6 - A Pictureless Pouty Surprise Party

 

[pipersmom]

Awesome update, Stephanie! I'm so glad you were able to get into the preferred seating! The pictures are just beautiful..can't wait to see if you made it back for the birthday party!

 

[Jdougherty]

Love MAW stories

 

[yinyanggirls]

I'm so sorry to read about Bella's hospital stay. I know you worked so hard and so long to avoid this. If it ends her pain and anguish over eating then at least there is a positive side.
I know you were looking forward to the CP, so I'm glad you were able to get front seats. Good planning with the restaurant!

 

[All7OfUs]

I am so sad that Bella is doing so icky in the eating/feeding dept.! I know you didn't want to do the tube again, but I have to say, if it makes her feel better, then maybe it's worth it.

You scored some great seats, and I'm glad; it obviously touched you deeply.

What a special evening all around!

 

[p00h4me]

Loved your Candlelight Processional report! So glad you asked about sitting closer to the front. This was my DH's favorite part of our trip in December 2005. My sister bought us a copy of the CD of the whole Candlelight Processional and he loves to play it many times during Christmas. Some years ago, my sister and I were at Disneyworld in December and was in Epcot. We went into one of the buildings and George Hamilton was sitting at a table with copies of a book he wrote. We were surprised to see him there. We were able to meet him and get a picture with him. He was the narrator for the Candlelight Processional we had planned on going to.

Hope you were able to make it back in time to GKTW for Mayor Clayton's Birthday!

So glad to hear that Bella is feeling better and praying that she'll be able to hit her goal of 100cc's soon so you both can go back home.