Nikolas & MAW-We're back from Mickey Mouse's House! Pre & Post trip reports

[2specialkids]

My name is Suzanne and I am momma to 2 very special kids (aren't they all). My ds's name is Nikolas and he just turned 5 in May. He was born with congenital hydrocephalus and cerebral palsy at 30 weeks. He spent 78 very long days in the NICU and had multiple shunt surgeries during that time. He had a total of 18 diagnoses when he was discharged from the hospital.

Our cast:
Nikolas-our Wish child, congenital hydrocephalus, CP, seizures, lots more diagnoses
Mikayla-his big sister, an Aspie and totally wonderful with her baby brother
Me-momma to 2 of the world's most amazing kids
Genna-my mom, coming with us to help out and relax
Kenneth-my dad, also coming to help out and relax

Nikolas is a very blessed little guy. He's non-verbal, unable to sit or bear weight and totally dependent on someone to care for him, yet he's the happiest person I know. I tell you some more about him and his issues later.

I debated about trying to get a wish granted for him but ultimately decided he deserves to have a wonderful vacation that's about him having a great time.

I have taken the kids to Disney World once before. It was for Mikayla's 9th birthday. The kids are 2 1/2 weeks shy of 8 years apart so it was also just after ds's 1st birthday. It wasn't the trip I planned-not a bad trip but not what I planned. We arranged to go when my parents went and my mom (I love her but...) took over. We didn't get to stay where we planned & to save my mom a bit of $$, I ended up spending almost $400 more than I planned. (At the time DH & I were separated so cash was super tight.) Well anything to keep the peace and get an extra hand so I could spend some time with dd in the parks alone. At the airport my ds had his first seizure so mom & dad got on the plane and the kids & I got in an ambulance. We did get there a day and a half later but that meant we only had 4 1/2 days so several things got cut.

I look forward to taking them back since Nikolas is big enough and aware enough to really enjoy it. He loves action, people and music. This should be a lot of fun for all of us. We're hoping to get the trip set for early November & stay at GKTW. It looks like a wonderful place that both kids will enjoy.

I've got lots of questions so I'm off to keep searching threads...

Oh, has anyone taken their parents instead of DH/kids daddy? The wish volunteers told me that one would be paid for but not both. That's not a problem but I would like to know how to get mom on the flight and in our hotel too. We just had out volunteer visit and I am waiting for the Wish Coordinator to get back to us with our travel plans so I know when we will be going and can get some questions answered for my mom (she's already making me nuts!).

 

[reyasmommy]

YAY!! You guys are going to have soooo much fun!

I look foward to hearing more! Happy planning!

 

[tinytreasures]

welcome
I can't wait to hear more about his trip

 

[MomTo4+more]

Hi Suzanne!

We live in right next door in IL and are going to be at GKTW November 1-7! Maybe we will have dates that overlap some. I am a single mom too. I wanted to bring my parents along, but my dad's health hasn't been good enough lately, so we are going alone. I think it will be great family time though.

I look forward to following along as your plans develop! It's a wonderfully fun experience, isn't it?!

 

[2specialkids]

I thought I'd post a picture of Nikolas so everyone can see who the wish was for (& because I think he's soooo cute!).

 

[MomTo4+more]

He's darling! What a precious smile!

 

[2specialkids]

He's darling! What a precious smile!

Thanks! I'm totally in love with him and DD!

(DH and I worked things out after 2 years but I still feel like a single parent 99% of the time because I just don't get any help from him most of the time.)

Does anyone have any experience taking more than themselves and a partner along on a wish trip? How does that work? Our volunteers were pretty new and really didn't know much about it. I just wonder how much we need to alot for mom's hotel and how to get her on the same plane we're on. There's no way dad's going to let her fly alone (she's got health issues too). I'm hoping it won't take to long to get all the info about our trip but I have no idea how long this process takes.

Can you tell I am a control freak and hate to not be the one setting everything up? I really do appreciate all of it I just hate not being able to answer questions asked of me. It will be nice to have some surprises for the kids and we're all getting really excited. I'm not sure how much Nikolas understands but I know he's going to have a blast when we get there. He just loves excitement and people....

 

[2specialkids]

I promised in my opening thread to give a bit more about Nikolas (Boo) so here goes....
It took over 3 years of ttc to get pregnant with him. Right away I had problems. About a week after I got my + test at home I started to bleed. I ended up in the ER and they told me everything was ok but to go home and stay in be until I could get in to the doctor. My doc saw me 2 days later and put me on bed rest with progesterone for 2 months. I ended up on bedrest for my entire pregnancy. During the 20 week ultrasound we found out that Boo was going to be extra special. You could see the brain malformations and enlarged head very clearly. I was told he didn't even have any brain matter (boy were they wrong!). Next stop 2 specialists-1 for him and 1 for me. Both doctors were wonderful and told me not to worry. They said that nothing is ever written in stone and just because he wasn't typical didn't mean he would never have any abilities. I spent the last 5 1/2 weeks of my pregnancy in the hospital because I went into labor very early. It started at 21 weeks but I was able to stay home until 24 1/2 weeks. Boo was born at 30 weeks. He was immediately whisked away and entubated because I had been on so much magnesium sulfate for so long to stop labor that he was to depressed to breathe. The first time I saw him he was about 5 hours old. My dad was in the delivery room with me and took a picture immediately after he was born so I would have it.
Boo spent 78 days in the NICU. He had a heart issue that was a pain to fix but thankfully didn't need surgery. He had 5 shunt surgeries in 3 months and ended up with an infection that left him without a shunt when he came home. He came home to an apartment because daddy couldn't handle having all the issues so had us leave. Yep, life was a bit stressful.
We've had more therapy and doctor appointments than I ever dreamed possible but he's done so much more than expected (by the doctors). He has multiple brain malformations, moderate cerebral palsy, a g-tube, sleep apnea, asthma and epilepsy along with his hydrocephalus but he doesn't seem to notice. He's such a happy and mellow little boy.
His big sis is 13 (8 years older) and has Asperger's Syndrome, a sleep disorder, anxiety issues and depression. Now she's 13 and has "teenager syndrome" too!
Me, I'm a 38yr old ADHD stay at home mom who sews to de-stress, has an etsy shop for special needs things and loves to cook. Oh, and I'm also a Medical Assistant.
Dad (39) is a self-employed tile setter but laid off right now since the economy is so bad.

 

[LindaBabe]

Sure is a blessing you are ADHD, Suzanne! It's the only way you'd be able to juggle your load. You're obviously doing a great job at it.

I believe your mom is going to be able to stay at GKTW with you. Stay on your wish foundation until you get the answers you need.

And, do come over to the wish trip thread = the moms will have tons of good advice for you. http://www.disboards.com/showthread.php?t=2039777&page=184
(ADD, here, too, lol)
F. Grandma Linda

 

[maroo]

I thought I'd post a picture of Nikolas so everyone can see who the wish was for (& because I think he's soooo cute!).

He is precious! Just so stinkin' cute!

Love the pics!!!!


Can't wait to hear more!!!!!

 

[Matt1026]

Thanks! I'm totally in love with him and DD!


Can you tell I am a control freak and hate to not be the one setting everything up? I really do appreciate all of it I just hate not being able to answer questions asked of me. It will be nice to have some surprises for the kids and we're all getting really excited. I'm not sure how much Nikolas understands but I know he's going to have a blast when we get there. He just loves excitement and people....

He is so CUTE!!!! He has a beautiful smile!!! I understand the control freak. I am too and that has been the hardest part for me. Trust me I know this hard but just sit back and enjoy the ride. We have not even left on our trip yet and so far I have had the time of my life. So just enjoy.

 

[wkualum]

Oh yeah he's cute!! Thanks so much for posting pictures of your little man. That smile is infectious I can tell. I bet he's a lady's man, huh?

I'm SO not a control freak so having to plan at all is hard for me. And honestly I'm not doing all that much. Basically just going to decide what I'm doing each day so I can get dining reservations. But other than that, I'm just going to go with the flow....Enjoy the ride for sure. It'll be a blast!

Shari and Mikaela

 

[2specialkids]

I'm such a planning freak! How do you guys stand the waiting? It's not even been 2 week and it's driving me crazy....
My biggest consolation....WE'RE GOING TO DISNEY WORLD!!!!

 

[2specialkids]

WOW!!! This is happening so much faster than I expected. Our wish coordinator just called and we're going from November 2 thru November 8. We're staying at Give Kids the World and I'm sooooo excited!
We're just waiting on final flight info to book mom's seat but it looks like the flight will be leaving Indianapolis at 7am and we're taking a late flight home to get the most time there we can.

 

[MomTo4+more]

Our trips overlap almost entirely! We will be there November 1-7. See you at GKTW!

 

[Mlissa88]

WOW!!! This is happening so much faster than I expected. Our wish coordinator just called and we're going from November 2 thru November 8. We're staying at Give Kids the World and I'm sooooo excited!
We're just waiting on final flight info to book mom's seat but it looks like the flight will be leaving Indianapolis at 7am and we're taking a late flight home to get the most time there we can.

From one Nikolas' Mom to another Nikolas' Mom (spelled the same way and everything!) ....I hope you have a wonderful time and I'm going to be reading your updates so please keep us in the loop with how everything is going!

I'm so excited for your trip! I want to hear all about it!

 

[wkualum]

Yahoo!!!! Congrats on getting dates. It'll be here before you know it...Promise!

 

[2specialkids]

I need some help here...I was reading thru the different pre-trip & trip reports and I came across lots of things people do to say thanks for all the wonderful things that CM's and others to do make these Wish Trips wonderful. My problem...now I can't find them & I didn't mark any!

What kinds of things should I put on my list? I remember reading about little thank you cards for different people and taking some extra light up bracelets & necklaces but what else?

I'm planning on taking an autograph book but still haven't decided on character tags or something else (I will put the character on each one for easy use ).

I know, I know...I just got my dates and I have just over 2 months to get ready but I'm such a crazy about stuff like this. I'll have everything packed about 3 days early and be double and triple checking to be sure I have everything and that I have all of it on a packing list so we don't forget anything. (Yes, even I think I'm nuts!-just can't help it.)

I just want to handmake some things and I need enough time to do them.

 

[2specialkids]

My mom can relax now...thank goodness! Lindsey called with our flight numbers and we got mom's booked too. Now she can relax and we can enjoy planning Nikolas' trip. I'm checking out all the rides in the parks to see where we can take him and what he can ride as well as maybe a few shows and LOTS of character meet-n-greets! I get our Pal Mickey and tell him all the time that "we're going to Mickey Mouse's house to play soon.". He just laughs and gets really excited. Matter of fact we're all kinda doin' a happy dance.

 

[2specialkids]

From one Nikolas' Mom to another Nikolas' Mom (spelled the same way and everything!) ....I hope you have a wonderful time and I'm going to be reading your updates so please keep us in the loop with how everything is going!

I'm so excited for your trip! I want to hear all about it!

Nice to see another "Nikolas". Our spelling is due to my SIL. Her name is Nikki and she was in Iraq when he was born so DH wanted us to name him in honor of her. She, thankfully, came home after 2 yrs there.