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The Week of YES!

LAST DAY

We woke up and found out that the gingerbread house was still closed, BUT the quick start breakfast was OPEN, so was the pool, and everything else! We had one last ticket for Disney World, but since GKTW had been closed for so much of our trip, the little ones just wanted to spend the day there. This made Dakota and Caelan happy because they were just still a little weak from being sick, and thought sleeping in would be nice. Also, since the closure, we were never able to do James’ star. We decided to make that our first stop. Then ice cream, then breakfast then the pool.
We went to the Magic Castle and played for a while, then finally did James’ star. I had wanted to take pictures, and video tape, but what happened instead was I sat there crying my eyes out while he wrote “Hi” on his star
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and placed it in the box.
The ceiling of the Castle, covered in stars.
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One of the first things to deteriorate was James’ ability to see correctly, so writing HI was about all he could do. I cried during the entire thing, as the fairy flew around, then opened the chest to see the star gone, everything. I decided we needed ice cream, STAT!
After we had breakfast/ice cream we went to the pool. I have to say, I LOVED the quick start breakfast, and I wish we would have tried it more than on our last day. I encourage everyone to try it early in their trip; it makes for a nice variety.
The day was lousy, and it sprinkled off and on, but the kids were so excited to be able to swim they stayed in the pool for hours. It was getting late in the day, and I finally convinced the kids that we had to leave or we would never be able to see both the Animal Kingdom and the rest of Epcot. We got back to the room, and Dakota was doing much better. We ordered Katie’s Kitchen for lunch and got ready for our final day in Florida. Caelan was not in a good mood, I think he was still feeling a little ill, and he said he didn’t want to come with us. I tried to get him to go, but he is very stubborn, and 15, so we left him. As we were driving to Disney it began raining, then it began RAINING!!! Like a flood…honestly we couldn’t see where we were going it was raining so hard. We drove all the way to Animal Kingdom then sat in the van for about 30 minutes hoping it would let up. It didn’t. I was just sad. We only got to do two days at Disney, GKTW had closed on us for half our trip, the kids had been ill, and the weather was awful. We were never going to be able to do this again. No way could we afford to come back, and besides, it will never be James’ wish trip again. So once again I broke down crying. After I gained my composure we decided to go to the outlet mall and but souvenirs. The kids had all been waiting until the final day and it seemed like the perfect time, since we couldn’t do anything else!
We got back to the villa and it was still raining, more like a torrential flood than rain. On our first day, we thought it may be fun our last night to go to Medieval Times, but had completely forgotten that we had requested the tickets. It was about 5pm, we were trying to think of something to do when we got a call from the front desk that our tickets were available! We had to talk Caelan into coming, actually we made him, and off we went to Medieval Times. The way the discount there works is the wish child is free, then the first two people are 50% off, then the rest are %20 off. They had given us the 50% off discount on the kids, and 20% off the adults…so we got to the front and asked if she could change it around, which they did. Then, you can purchase an upgrade, where you get the front row, a banner and some other stuff, which none of the kids cared about, so we declined. I told the “wench” we needed wheelchair accessible and this confused her terribly. Finally she handed us our tickets and we went in. The only wheelchair accessible spots they have are in the front row!
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We did have to transfer James from his chair, then they stowed it for us. If you have a large child who is in a chair, I’m not sure MT is a great idea, since you have to transfer, and if they have to use the restroom you have to wait for the wench to go get the chair. For us it was fine though. The food was yummy, the show was fantastic and we all loved it so much we thought it was one of the highlights of our trip.
Ours was the green knight. He even gave Mackenzie a rose.
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Our knight!
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Our “wench”. Her aunt is Mayor Clayton!
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Mackenzie, being 5 did get bored, but was very well behaved. I can see where kids under 5 may not enjoy this as much as older kids.
After the show we took some pictures with our Knight,
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the King and Queen
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and played around the castle. It was about 8:30pm I think when we left. Once outside we discovered that it had stopped raining! OK, I had the whole family; we were 30 minutes from Disney World on our last night. It was unanimous we were going to see the closing ceremony Wishes!!! I was thrilled, since I had really wanted the kids to see this. I remember sitting on my daddy’s shoulders when I was about 5, watching Tinker Bell fly through the air. We had to dash through the parking lot, gate and actually run to the Castle but just as we were there we heard the announcement that it was about to start. WE MADE IT. The show was better than I expected. About halfway through, Jiminy Cricket starts talking about wishes, and how wishes come true, and I start thinking about how blessed we were to get this trip for James, and how much I want him to be better, and I’m wondering if he’s listening to Jiminy Cricket and wishing he wasn’t sick anymore or if he’s just thankful his wish had been granted….and of course, I start crying again. Then Macylea, James’ twin sister turns to me and I see tears streaming down her face, and her and I hug, still watching the show, she leans over and says “Um, this is ridiculous!” Which in teen-age speak means, “I can’t believe we’re at Disney World, watching fireworks, bawling our eyes out”. I turn around to check on my DH Mike and the teen-agers who were standing behind us and see Mike, doing what? Crying! He has Mackenzie on his shoulders and he says, “I’m just thinking that she’s going to remember this moment the rest of her life, sitting on her daddy’s shoulders, watching Tinker Bell”. I cry harder. So my teen-agers put their arms around me and there we were, 8 people from Alaska, in Florida, at Disney World watching WISHES all of us crying, except James and Mackenzie, who are too mesmerized by the fireworks to notice their family making a scene.
The fireworks ended and we had a little over an hour until the park closed at midnight. We dashed for the Buzz Lightyear ride, then Space Mountain, and a few others.
Mackenzie fell asleep in Dakota’s arms as we were walking down the ramp from Space Mountain. She’s still clutching Jesse.
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At midnight we conceded that it was over, and headed out, making a final stop at the huge gift shop on Main Street.
Caelan had another group of girls following him around, so we got his pictures with them (and Mackenzie)
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Mackenzie playing with hats at the gift shop
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On the way we passed a few PhotoPass photographers and stopped for our last pictures. Since Mackenzie had fallen asleep, we took the pictures without her, but then she woke up, so her pictures are separate from ours.
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We got back to the villa about 1:30 am. The kids collapsed into bed, but Mike and I had to pack. We had to be at the airport at 6am, so there would be no sleep for us.
 
Amber, thank you so much for sharing your trip with us ....... I am sending good thoughts your way for everyone's health and happiness.:hug:
 
Hi friends,
With everyone's well wishes, I hope I didn't come across as too crazy in my update. I just couldn't believe that we're dealing with another medical issue, especially with Dakota, who's almost 18! Thanks so much for your good thoughts and concern. Honestly, we can deal with this. Our two worst fears are always cancer and the MNGIE that James has. Since it's not either of those, we feel like it's more of a nuisance than a reason to get depressed. Our only real concern is that Dakota is planning on becoming a cop, and we're hoping this doesn't hurt his chances. Otherwise we are ok, confused and irritated, but ok. Thanks again you guys, we've kept this to ourselves, not even telling anyone at church, so it felt good to get it off my chest and get some encouragement :goodvibes
 
Amber, I can't believe what you have on your plate right now! I hope they find the answers quickly. Just the word neurology can drive me crazy sometimes. Thanks for sharing our last day. i laughed and cried while reading it. :hug:
 


I am so sorry to hear about what is going on. We will certainly keep you all in our prayers. Your family is such an inspiration! You all deal with everything thrown you way with grace!

THANK YOU for continuing your trip report in this trying time. I am so glad that your family all got to experience WISHES!

Take care of yourself, and know that you always have a virtual family here to listen and share with.

{{HUGS}}:hug:

Lynn

 
I'm so sorry to read of all that you are going through. And I had no idea that James tested positive for MNGIE.:grouphug: Ali has mitochondrial disease, too, though we have yet to specifiy exactly which kind. We're currently in the process of having whole unit sequencing done on her muscle. At any rate, I just thought I'd say hello and let you know that I'm thinking of you all.
 
I am so happy that you shared your final day with us! Reading your TR has been and inspiration and one I have throuroughly enjoyed! You have a very special family! I am so sorry that you are dealing with all these new issues with Dakota, but I have no doubt that you will all get through it together!:goodvibes

I hope you will come back to the Wish Tripper Thread often and keep us updated on your wonderful family!:grouphug:
 


Amber...

Thanx so much for sharing.......................made me cry just reading it. I am so sorry your week was such a challenge, between the rain, the kids getting sick, GKTW 'closing' etc. You really had a great attitude though and made the best of it (you may just be a better woman than I LOL).

So very sorry to hear about Dakota! Life can be crazy can't it? Hang in there. Keep the faith. We'll all remember you and your family and be thinking only good thoughts for your future!
 
Wow...

what a roller coaster ride! Both on your trip and as you have gotten home.

:hug::hug::hug::hug::hug::hug:


Hang in there! Please keep us posted!

The ending to your TR sounds AMAZING! What an awesome night. I love Wishes and have cried through it about each time I have seen it. :cloud9:
 
Amber!!!!

Thanks for the latest update!! The medieval dinner looks awesome!


I love your amazing attitude, despite the struggles through the trip (puke wins every time! :lmao: ) and of course for the recent medical concerns for Dakota.

You guys will be in my prayers --- please keep in touch somehow so you can update on what they end up finding out.

LOTS of HUGS and PRAYERS,
Beth
 
Amber thank you for a wonderful TR. I enjoyed reading all about it. Thank you for all of the great information you have shared as well. Please keep in touch with us so we know how your family is doing. Many prayers for Dakota and James and all of your family.
 
I read it all yet but a wanted you to know you had a fellow dis'er here in Soldotna :dance3:
 
Wow can't type either. I haven't read your whole TR yet, but I was excited to actually see someone from this lil old town.
 
Wow can't type either. I haven't read your whole TR yet, but I was excited to actually see someone from this lil old town.

Do you have a wish child? I know that WUNS helped other families in our area, and that there was one going to GKTW soon from Kenai. If you're a wish family I'd love to meet and offer some tips :goodvibes I'm so excited to "meet" someone from the peninsula on here!
 
Oh, Amber! Hang in there! I am sending good thoughts north to alll of you!

I missed chatting with you, and literaly MISSED you while we were there :upsidedow

Hi Amber, I'm sending you positive vibes and hope everything will be ok with Dakota & James. xx

Positive vibes...that's exactly what we need.

Oh my goodness...you have had your share of worries. I will keep you guys in my prayers. Stay tough, sweetie! :hug:

I've had my share and a few other peoples share too! The good news is james is doing very well, so it makes it easier to concentrate on Dakota for a moment

I am so sorry for what you are going through, you are in my prayers.
I will take any and all prayers :goodvibes

Oh Amber I am so sorry to hear this:hug: Dakota and all of you are in our prayers.
I think the prayers are working, b/c Dakota is being great about this, and I'm not really too freaked either

Hi Amber!!

I had been thinking of you for a while now -- mainly because I too want to finish our TR, and I always thought when you finished, that I would be forced too -- ;).

I'm loving your TR so much! I just got caught up again, thanks again for sharing your experience there, it's been one of my favorites, and I feel like distant cousins :)

I am so sorry and heartbroken to hear what's going on with Dakota! :hug: Like you don't have enough going on! Hang in there! I know how frustrating neurological stuff can be. I agree, everything seems to have clear cut lab work, but you get into Neuro stuff and it's all guesswork...ugh
I will be praying for your family and for WISDOM for the doctors to figure out what is going on and how to fix it. I think they have a pretty good idea, but I love praying for wisdom, since that's really what the docs up here seem to lack :)

Don't worry about finishing the TR -you have much more important things to worry about- we'll be waiting when you are ready! And I can totally appreciate the post -GKTW blues. :sad1: What IS it with the GKTW blues? I'm so glad I wasn't the only one. Like Mike said, it's the best vacation ever and you leave knowing you can NEVER do it again!

Prayers and Hugs from your friends in the smallest state to our friends in the largest!!

:hug:

Best,
Beth

Amber, I am so sorry to hear about Dakota! Like you don't already have enough to deal with ! They say God never gives you more than you can handle, so I hope that is true for you! I will keep your whole family in my thoughts and prayers!:grouphug:
After sharing with you guys on here I had a huge weight off my shoulders, and now I feel pretty ok with it. I'm just ready for him to get a good night sleep (that isn't in bed with my hubby and I!!!) It's like having a newborn again.

My thoughts are with you all

SO thankful for all the prayers :lovestruc
 
I really liked reading your TR even though you had alot of mishaps you really had a wonderful trip and made the best of everything. You are a real inspiration to others. I am sorry your Son Dakota is having health issues and will keep him and your Family in my Prayers. I am glad to hear that James is doing well right now. I too hope you will come back and let us all know how your family is doing. It seems like we all become Friends on here and wev'e never met. That is one of the special things about this sight. Take care.
 
We went to the Neuro yesterday with Dakota. His EEG and Sleep Study were pretty clear cut, he is having seizures that originate in the frontal lobe, so he apparently has frontal lobe epilepsy. The doc put him on two kinds of meds and all in all it could have been so much worse. The cyst in his brain is pretty small, about the size of a large grape, but it isn't the cause of the seizures, and doc says we just need to monitor it, because these kinds of cysts can grow and then do cause problems.
Doc did say though that we may want to consider having Dakota tested for a mitochondrial disorder. When Dakota was 12 he was hit suddenly with juvenile rheumatoid arthritis that was fairly difficult to get under control. He had periods of relapse/remission but for the last year he has done very well. When we told doc that his muscles hurt more than his joints he became interested. During Dakota's "relapses" his muscles are very painful, tight and weak, but his joints are fine. Also this hit him at the same age James got sick...and if James has a mitochondrial illness, then Dakota may also, just a milder version. Apparently relapse/remission is common in some mito illnesses.
We are suppose to get James' muscle biopsy next month to get the confirmation, and if it comes back positive then we will consider getting Dakota tested. I'm still not sure I even want to do the muscle biopsy, since I've heard it's very painful, and honestly, I'm kinda done with invasive tests on my son! There isn't a cure, treatment or much else we can do, even with a confirmation so it's a little hard to want to do anything painful to him. Well that's our update, it's as good as we could have asked for, and thanks everyone for your prayers :)
 
Amber,

I'm so sorry to hear about all of the medical issues that are now arising with Dakota. I hope and pray that the meds will work their magic and help him get back on a more even keel. As usual, you seem to have an amazing attitude about all this. You model what I attempt (and so often fail) to do -- not get mired down in a pity party, but just give thanks for the positives and try to figure out what can be done to make the situation the best it can be, given the circumstances.

Your TR is a gift to us all. It reminds us that laughter, joy and love can be found in any situation.

Not sure about vomit though. Vomit does trump everything!
 
Amber,

I'm so sorry to hear about all of the medical issues that are now arising with Dakota. I hope and pray that the meds will work their magic and help him get back on a more even keel. As usual, you seem to have an amazing attitude about all this. You model what I attempt (and so often fail) to do -- not get mired down in a pity party, but just give thanks for the positives and try to figure out what can be done to make the situation the best it can be, given the circumstances.

Your TR is a gift to us all. It reminds us that laughter, joy and love can be found in any situation.

Not sure about vomit though. Vomit does trump everything!

I just had this conversation with my BFF...every time were at the hospital I'll see a child who in MY opinion seems worse off than James. At first it was any kid in a wheelchair, then James ended up in a chair, then anytime I saw a kid with a feeding tube, my heart just sank, THAT"S a sick KID!....then James got a tube and suddenly feeding tubes didn't seem so bad, we definitely got dealt a dozy with James getting sick, but if I'm super honest with myself, it could have been so much worse. GOD gave me what I could handle and gave me the strength to handle it with as much grace as I could muster up. Not to say I didn't have my own pity parties at times, but even with everything that's happened, I can't help but feel so grateful to be the wife of an amazing man and the mom to 6 fabulous kids!
And yes, vomit trumps EVERYTHING!
 

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