Cade's Wish Trip Pre-Trip Report

[Momtokcc]

We found out two weeks ago that my sweet Cade's wish to meet Lightning Mcqueen at Disney was approved through Magic Moments and we are all so excited! We haven't gotten dates yet, but we are hoping for October.

So this is who we are:

Me - Mom, DH, DD - Kendall (17), Cade (9) - the wish kid, I call him Super Cade, and Colton (7)

I know this may sound strange, but it was actually Cade's speech therapist who originally nominated him for a wish. She has seen him go through so much. Anyway - Cade has a myriad of issues that his doctors feel are all connected together in some way but despite extensive testing we have yet to come up with the answer...for me it is frustrating and sometimes scary as new symptoms appear. I'll tell you more about him in a later post.

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This is a picture of Cade from this past March when we were at the Miracle Rodeo.

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This is Colton - his teeth are growing in some. He is my little charmer.

I don't have a great one of Kendall, I'll have to find one!
I don't think I did the pictures right still, I'll have to work on it if they don't come up.

 

[sarsop524]

Hello! I found your report, but can not see your pics. It seems like I remember reading you are hoping to travel in October?? Our family will be traveling the week of Thanksgiving. I have twin girls who are 8, one of whom qualifies for the wish. I look forward to learning more about your family and your planning

 

[Momtokcc]

Hello! I found your report, but can not see your pics. It seems like I remember reading you are hoping to travel in October?? Our family will be traveling the week of Thanksgiving. I have twin girls who are 8, one of whom qualifies for the wish. I look forward to learning more about your family and your planning

Hi, yes you are right - we are hoping to travel in October. We did think about Thanksgiving, but my daughter has a band trip that week to Chicago so it was out for us.

I think I have figured out what I did wrong with the pictures so I am going to try again!!

 

[blessedmom4]

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To the DIS and CONGRATS on the wish! Looking forward to the pics!

 

[Momtokcc]

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Colton

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This is my sweet Cade - I tried to make it smaller, not sure if it worked.

I still have to find a good one of Kendall to upload and put on here. She is such a great big sister.

Here is a little more about Cade and his history. He was born full term, but small at 5lb 13 oz. He was dx with Nystagmus at 5 mos and that is also when we found out that he had mild PVL. Not too long after that he had his first seizure that I noticed, but after seeing the neurologist realized that alot of the strange little movements he made were seizures and he had been having seizures all along. We were able to get his seizures under control and now he has been seizure free for over 2 years. As a baby/toddler the main things we dealt with were developmental/sensory...those type things. He was globally delayed and did speech, occupational, physical and also worked with a vision therapist. He seemed to be doing good - the only doctors we had to see were his eye doctor and his neurologist. His ped was handling his asthma at that time. We did have to do feeding clinic to teach him how to eat (we had had to teach him how to do everything else movement wise so it was no surprise), but he "graduated" from feeding clinic when he was about 2 1/2...just before Colton was born. After that it just seemed like things kept popping up. He was dxed with sleep apnea - a combo of obstructive and central. He had t & a removal and it helped! Still moving along with all his therapies but as time went by it seemed as if he wasn't growing and that is when the bigger workup started. Now Cade has had so much testing - by a regular genetics doc, a metabolic genetics doc, his neuro, his immunologist, his endocrinologist...and still no answers. So many normal...or not diagnostic tests for a child who is clearly dealing with too many things that are not "normal". He got his feeding tube when he was 6, but he can't tolerate a normal formula like pediasure, he has to have an amino acid based formula. We have no ideas as to why. His immune system doesn't work right - he has problems with his NK cell function, cytotoxic t cells and something else I can't remember right now...sometimes it works better than others. He has his immunologist confused...he has all his doctors puzzled. The IVIG infusions have helped him though, so I am thankful for that. He is so good about getting IVs too and sitting through his infusions. His GI isn't really sure what is going on with his stomach, but this past April he started having daily pain. He is on two pain meds to help it - his neuro thinks part of it is autonomic. I don't always know what to think. I just know that he missed part or all of every school day from mid April on b/c of it. GI did an EGD w/ biopsies but once again everything was normal.

One of the things that bothers (and worries/scares) me the most is his lack of growth. He is almost 10 and is the same size as his 7 year old brother. Cade is growth hormone deficient so we were doing growth hormone shots. We did the shots for almost 2 years and at our last visit with his endo we decided to call it quits. It made no difference in his growth rate...which is about 4 cm per year. I really wish someone could explain to me why the GH didn't work for him. He's also cortisol deficient and he wasn't always...so that can get scary at times too.

His energy level this summer is lower and I am noticing that his tolerance to heat is lower too than last year. Whatever it is he has seems progressive in that he adds health issues as he gets older, but we still have no concrete answers. Anyway - that is some stuff about my sweet super Cade! I didn't mean for it to turn into a novel.

 

[blessedmom4]

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[GavandGraciesMommy]

My son has also wished to meet lightning mcqueen for his birthday. (October 15th) We are waiting to hear from Make a Wish if it is approved. Do you knoww here your son is getting to meet him at? I just wondered where Lightning even was in the parks. Love to hear how your trip goes. So exciting for our little guys

 

[Momtokcc]

My son has also wished to meet lightning mcqueen for his birthday. (October 15th) We are waiting to hear from Make a Wish if it is approved. Do you knoww here your son is getting to meet him at? I just wondered where Lightning even was in the parks. Love to hear how your trip goes. So exciting for our little guys

I do not know where he will meet him - he is at Hollywood Studios I believe. My son at first didn't even realize that LM would even be at Disney and then when he realized that he was so excited. I know we will also want to do the Lights, Motors, Action Extreme Stunt Show since LM is in that show now. Other than that I pretty much will just have to figure out what I think Cade will like. We are hoping to go on October 20 but we haven't gotten official dates yet.

 

[Momtokcc]

We were out of town last week visiting my sister - we had a great time and Cade did great. He didn't get sick at all. He is pretty good at conserving his energy and not overdoing things.

We still haven't heard for sure about our dates for our trip. I am getting a little anxious because if we do get the October dates I really need to start making some definate plans. I have been reading and researching but I haven't been to Disney in so long (1982) and it is completely different now!
I know Cade wants to "meet" Lightning McQueen, but other than that he can't really tell me what he wants. He can talk but he has language issues and even if I show him options he just gets overwhelmed and can't make decisions. We will have to decide for him. I just want to make sure I get it right! Any advice or suggestions are welcomed!!

 

[maroo]

I found you!!

I linked you on the first page of the Wish Trippers thread where the people are planning trips and waiting on dates!

You guys are going to have a GREAT time!


You can meet Lightning McQueen at DHS. He has a little "meet and greet" area where you can meet Mater, too.

I am going to post a You Tube video here...it isn't mine...hopefully that is ok.

Note that they don't talk...I just don't want him to think they will and then they don't...??

Someone Meeting Lightning McQueen

 

[Moodyzblu]

I hope you hear your dates real soon ! We got to see Lights Motor Action with LM on our wish trip in April and it was such a cool part of the show ! Your son will love it for sure.

 

[carebearkidney]

Just checking in to see if there's any word on those date! Hope you hear soon. Have you planned which days you will want to do things so you can go ahead and start getting your reservations in, even if you need to tweak them later?

 

[Momtokcc]

I hope you hear your dates real soon ! We got to see Lights Motor Action with LM on our wish trip in April and it was such a cool part of the show ! Your son will love it for sure.

I love hearing that!! Now I really can't wait for him to see it - he probably won't say too much, but I'll know by the smile on his face!

 

[Momtokcc]

Just checking in to see if there's any word on those date! Hope you hear soon. Have you planned which days you will want to do things so you can go ahead and start getting your reservations in, even if you need to tweak them later?

Yes! We found out yesterday that we got the dates we wanted. We will be going Oct 20-26 and I have no idea what we will do on what days. I need to get my planning cape on and get busy! I am just pretty lost as to what we are going to do.

 

[Momtokcc]

We found out yesterday that we are going October 20-26th. We will be staying at GKTW. I don't know yet about flight information - I hope we get an early one though. I really need to start planning now - it is all a little overwhelming to me. I still kind of can't believe that it is actually real!!

 

[carebearkidney]

Yes! We found out yesterday that we got the dates we wanted. We will be going Oct 20-26 and I have no idea what we will do on what days. I need to get my planning cape on and get busy! I am just pretty lost as to what we are going to do.

and just a big Yippee Skippy!!
Ask everyone what one thing they really want to do, and then try to plan around that maybe. I don't know...I've changed my mind 6 times this week and we DON'T have dates!

 

[texastwinmom]

Hi! I'm a new fan! LOL Excited to hear about all your plans, and your boys are super adorable!!!

 

[Momtokcc]

I haven't updated lately - things have been a little crazy in our house. The most important thing about today is that my sweet Cade is 10 years old! Anyway we found out our flight times and I am so pleased. Our flight to leave to Orlando is at 9:05 AM and then our return flight is at 5:35 PM. They are nonstop flights and only about an hour and a half so we should get there early on the 20th. I am so excited!!!

I think I am going to attempt to make some matching tshirts for us to wear, I think I can do it with iron on transfer paper...I hope anyway. The kids go back to school on the 20th and so maybe I will have a little more time to do some things like that then.

 

[Lilfoot93]

I'm joining in Glad sweet Cade gets his wish. Glad you got the dates you wanted and those are great flight times too!

Jackie

 

[Momtokcc]

I'm joining in Glad sweet Cade gets his wish. Glad you got the dates you wanted and those are great flight times too!

Jackie

Thanks Jackie! I am really excited about the flight times - it really will maximize our time there b/c our flight is short! We've never flown with Cade and his medical stuff. I know he doesn't have as much as some kids - but I'm still a little nervous about all of it.