Jake's date with the Princesses - MAW Trip 1/28/11 -DONE-updated Pics added 2/5

[lawblond7]

Well we finally got the dates for Jake's Make A Wish Trip - a few things got in the way so we had to go back to the drawing board.

First let me introduce you to us. I am Sharon (47) - single mom to 3 chronically ill boys all 3 of my boys have a mitochondrial disease. Jake is 17 (he will be 18 in April) and the twins - Clayton and Cole are 13 (to be 14 in March). Clay is the sickest of the 3 and had his MAW at 4 - when we really did not think he would make it thru another year. Jake has suffered a lot of decline in the last several years - including massive depression at not having the ability to do many of the things that he used to be able to do. His neurologist (mito specialist) referred both Jake and Cole for wishes (Cole has wished to go on a Mediterrian cruise).

Here are the boys

This is the boys and my mom in Disney in December 2009

This is Jake now

Here are all 3 Cole, Jake and Clay

This is me a few years ago - I tend to hate pictures - my hair is still blonde, but shorter and I am bit heavier

We live just outside of Washington, DC - Alexandria, VA and I work in Arlington, VA.

Initially Jake wanted to stay at a Disney Hotel - the Polynesian -as we stayed there before and MAW was able to get that BUT then he decided it would be too small in one room with all 3 boys and my mother (his grandmother and my 2nd adult), so he asked for GKTW. They were able to accomodate us on our first choice (the boys are off school January 31 and Feb 1, so they will miss a few less days of school).

So that is our introduction to our family and our trip.

I will be taking Clay's convaid cruiser with me on the plane along with the feeding pumps for Clay and Jake and also the formula (probably will ship a box of medical supplies down ahead of time - our local MAW offered to get the formula and pumps locally in Orlando - BUT Clay is on an elemental formula - that is very expensive so I said I would bring it as our insurance company covers it AND also Clay prefers his own pump it is small and light.

I will be traveling with lots of medications - hence why when I go to visit my mom in Florida I always drive, but MAW is flying me and the 3 boys from the DC area and they will be transporting my mom via train from South Florida (west Palm Beach) to Orlando and GKTW.

The other reason Jake decided to stay at GKTW is there is more room for Clay's wheelchair and my mom will be renting a scooter as she had both knees replaced in September.

Jake is looking forward to all of Disney - he wants to have dinner with the Princesses - he actually wanted to have a date with them - but.... as he says they are all HOT. He is also so looking forward to going to Universal and seeing Harry Potter World - we have not been to Universal in a very long time.

SO that is our introduction. I am not sure what time we are leaving or what airport we are leaving out of but we should hear from our wish volunteers soon.

Hugs
Sharon

 

[blessedmom4]

Congratulations on this Wish trip, your dates are so close! You must be very excited!!! Looking forward to reading more.

 

[lawblond7]

Yes the dates are very close - we debating go for Jake's 18th b-day in April BUT we wanted to NOT go during a holiday break when it would be more crowded. We were there Christmas time 2 years ago - and it was SO crowded. Between my mom in a scooter and Clay in a wheelchair (which Jake will sometimes sit in too - or on the scooter with my mom) we figured this would be a better time, plus do to semester end of school the boys have Monday and Tuesday off.

We are still trying to plan out what we want to do - know we will do 3 days in Disney and 2 at Universal - probably not hit Sea World. Friends of ours will actually be up in Orlando for the weekend so we will hopefully catch up with them. Other than dinner with the princess Jake is still trying to plot out what he wants to do.

He had gone back and forth on what he wanted to do - other thoughts were going to ESPN to host Sports Center - HE LOVES SPORTS or meeting NASCAR driver Kyle Busch - BUT when it came down to it he simply said I love Disney it is the "happiest place on earth" and I am happy when I am there so that is where I want to go.

 

[lawblond7]

So we are working on what we are going to do on each day when we are there.

Friday - we arrive not sure what time - so we will decide what to do then. Maybe the Boardwalk or Downtown Disney

Saturday - We have Breakfast at 8:20 booked at Akershus Royal Banquet Hall in EPCOT so Jake can eat with the Princesses. We looked at having dinner or lunch at the Castle BUT Jake is a VERY picky eater so breakfast actually worked best for him - and we are early birds - with the exception of my mom - BUT she will get up if we have to jump on her. Normally I am up at 4:30-4:45 AM during the week, and Jake is up at 5, so we will be OK. After breakfast we will do the rides he wants to do in EPCOT - including Test Track - one his favorites, Soaring - WE love this too and he loves Mission Space - I do not go on this hate be closed in and Clay does not go on do to his seizures - this beleive it or not is the ONLY ride that causes issues in all of the parks - roller coasters are fine BUT this is not good. Also we will do Spaceship earth and Nemo. Then we will most likely head to either Animal Kingdom or Hollywood Studios.

Sunday - This whole day will be spent at Magic Kingdom. We will not start as early in the AM, but will stay late to see the parades and fireworks

Monday - We will do either Animal Kingdom/Hollywood Studios - whichever we do not do on Saturday and then Probably go back to the Magic Kingdom

Tuesday - Will be spent at one of the Universal Parks

Wednesday - Will be spent at the other Univeral Park

I know he cannot wait to go to Harry Potter World and ride the roller coasters at Universal - Luckily we ALL love Roller Coasters - even my 71 year old mom. 2 years ago when we went - Clay wrote a story about his CRAZY Grandma as she went on Everest and Aerosmith (seems I forgot to tell her before we went on it about the loop and corkscrew turns - lol - BUT that did not bother her - what did was that it took off so fast) BUT she loved them all too. So we will be doing lots of coasters.

Jake is still trying to decide what other special things he wants to do besides eating with the Princesses - which we booked -- SO we are open to any and all suggestions - please remember he is almost 18 and his brothers are almost 14.

I did order a scooter from my mom and it will be delievered to GKTW by 8am on Friday the 28th of January -- we are getting so excited.

Thanks for all the help


[/FONT]

 

[lawblond7]

Spent a bit of time on line today as I was off. We went to Disney in December 2009 - stayed at the Polynesian - funny thing as I had booked adjoining handicapped rooms at All Start Sports BUT when I got there they did not have ANY handicapped rooms let alone 2 connecting (this was Christmas week) so they moved us tothe Polynesian and then we went January 2010 and stayed at OKW. In addition we have been there several times when the boys were younger - including Clay's with in 2000

The boys know exactly what rides they want to go at Disney BUT looking for something different - we will be going to Harry Potter World. I also have a coupon for the RIchard Petty Driving Experience that I won at an auction in October so maybe we will do that -- BUT lookinf for things he will like.

The only ADR i have is at Akershus Royal Banquet Hall in Epcot at 8:30 am. I am thinking of making another reservation or 2 - Jake loves steak and mentione Le Cellier Steakhouse which we went to last January BUT not sure we would be at EPCOT at that time. Any suggestions. We have eaten and Tony's another we like. Just looking for a few different suggestions - I have 3 boys all picky eaters (and 2 have g-tubes but eat) and they need to be able to get Chicken or Steak although Cole does love seafood.

 

[Mom2mitokids]

Hi Sharon,
Not sure you remember me, but I meet you through caringbridge page. My daughter is Kylee. All my kids have Mitochondrial Disease, but just different degrees. Kylee is like Clay. She hasn't been doing well this past year. She did her MAW trip in 08. Korissa is my next sickly child. She is doing her Wish in March. When it's not too hot and not to cold...at least I hope so. The other 3 have a mild form of Mito. Thankfully they don't get a wish.
So glad Jake is getting his wish. I still get their CB updates, but I have been just plain lazy and my health has taken a turn too. I can't wait to hear more about your plans. So far they look great.

 

[MitoDadMO]

Hello from another Mito Parent. Our youngest son Kade has mito depletion diesease, and has associated epilepsy, hypotonia, cortical vision impairment, and global mental/physical delays. We are awaiting dates from MAW as we speak. We too will be going to disney! I cant wait to hear about your trip

 

[lawblond7]

Of course I remember Kyle and see your CB posts -BUT I have been a bad mom and taken about 9 months off from updating CB - although I am in the process of doing that now (or typing it for the last 2 days - lol = hoping to get it posted today). Mainly been on FB - lawblond7@aol.com

Josh - sorry to hear about your son having mito - all 3 of my boys have it - Complex I and IV and all affected differently, although they do have some similarities.

Clay at an infant I was told he would not see 4 or walk or talk - he will be 14 in just under 2 months - although I will say it has not been without struggles. He has been g-tube dependent since 18 months and still is - although he can eat some by mouth. He also has epilepsy and is on lamictal and trileptal. For some reasons rollercoasters do not bother him while the lights and rides like mission space, etc do.

We are so looking forward to goin to Disney in a little over 2 weeks -- CAN SOMEONE TELL ME HOW TO GET A TICKER????? or make me one - thanks

Still trying to plan things out so really looking for suggestions.

 

[brookerene]

Of course I remember Kyle and see your CB posts -BUT I have been a bad mom and taken about 9 months off from updating CB - although I am in the process of doing that now (or typing it for the last 2 days - lol = hoping to get it posted today). Mainly been on FB - lawblond7@aol.com

Josh - sorry to hear about your son having mito - all 3 of my boys have it - Complex I and IV and all affected differently, although they do have some similarities.

Clay at an infant I was told he would not see 4 or walk or talk - he will be 14 in just under 2 months - although I will say it has not been without struggles. He has been g-tube dependent since 18 months and still is - although he can eat some by mouth. He also has epilepsy and is on lamictal and trileptal. For some reasons rollercoasters do not bother him while the lights and rides like mission space, etc do.

We are so looking forward to goin to Disney in a little over 2 weeks -- CAN SOMEONE TELL ME HOW TO GET A TICKER????? or make me one - thanks

Still trying to plan things out so really looking for suggestions.

If I remember right go to distickers.com , go to ticker types, click vacation countdown, follow the directions to choose your background, then your slider and then put what you want to say on it then copy and paste the pseudohtml link into your signature



I inserted one I made for you in here as an example! ALthough it looks like I forgot the slider! So mine isn't good enough!LOL!
Brooke

 

[Mom2mitokids]

Of course I remember Kyle and see your CB posts -BUT I have been a bad mom and taken about 9 months off from updating CB - although I am in the process of doing that now (or typing it for the last 2 days - lol = hoping to get it posted today). Mainly been on FB - lawblond7@aol.com

Josh - sorry to hear about your son having mito - all 3 of my boys have it - Complex I and IV and all affected differently, although they do have some similarities.

Clay at an infant I was told he would not see 4 or walk or talk - he will be 14 in just under 2 months - although I will say it has not been without struggles. He has been g-tube dependent since 18 months and still is - although he can eat some by mouth. He also has epilepsy and is on lamictal and trileptal. For some reasons rollercoasters do not bother him while the lights and rides like mission space, etc do.

We are so looking forward to goin to Disney in a little over 2 weeks -- CAN SOMEONE TELL ME HOW TO GET A TICKER????? or make me one - thanks

Still trying to plan things out so really looking for suggestions.

I'm taking a break from CB too. I don't think I updated since Sept. Kylee has been in the hospital every month since August for clean outs. for the tickers...I just hit someones and it took me to the site.

 

[Mom2mitokids]

I tried to add you on FB, but couldn't find you. I'm Kris Postel if you want to add me.

 

[lawblond7]

Ok trying the tracker - will see if I did it right. Working on lists.

 

[lawblond7]

Ok got the ticker working -- still looking for suggestions for anything special to do with 3 teenage boys. Thanks

 

[maroo]

Hello!!

I linked you on the Wish Trippers thread and decided to come over and post.

So we are working on what we are going to do on each day when we are there.

Friday - we arrive not sure what time - so we will decide what to do then. Maybe the Boardwalk or Downtown Disney

Sounds like fun!!!

Saturday - We have Breakfast at 8:20 booked at Akershus Royal Banquet Hall in EPCOT so Jake can eat with the Princesses. We looked at having dinner or lunch at the Castle BUT Jake is a VERY picky eater so breakfast actually worked best for him - and we are early birds - with the exception of my mom - BUT she will get up if we have to jump on her. Normally I am up at 4:30-4:45 AM during the week, and Jake is up at 5, so we will be OK. After breakfast we will do the rides he wants to do in EPCOT - including Test Track - one his favorites, Soaring - WE love this too and he loves Mission Space - I do not go on this hate be closed in and Clay does not go on do to his seizures - this beleive it or not is the ONLY ride that causes issues in all of the parks - roller coasters are fine BUT this is not good. Also we will do Spaceship earth and Nemo. Then we will most likely head to either Animal Kingdom or Hollywood Studios.

Sounds like a great plan!! Make sure those character handlers know that his WISH is to meet the Princesses! Slip them a note or something...

Sunday - This whole day will be spent at Magic Kingdom. We will not start as early in the AM, but will stay late to see the parades and fireworks

Woo Hoo!! Love this day!

Monday - We will do either Animal Kingdom/Hollywood Studios - whichever we do not do on Saturday and then Probably go back to the Magic Kingdom

Good plan!

Tuesday - Will be spent at one of the Universal Parks

Wednesday - Will be spent at the other Universal Park

I want to see Universal one day!

I know he cannot wait to go to Harry Potter World and ride the roller coasters at Universal - Luckily we ALL love Roller Coasters - even my 71 year old mom. 2 years ago when we went - Clay wrote a story about his CRAZY Grandma as she went on Everest and Aerosmith (seems I forgot to tell her before we went on it about the loop and corkscrew turns - lol - BUT that did not bother her - what did was that it took off so fast) BUT she loved them all too. So we will be doing lots of coasters.

Seriously?!?! She does coasters?!? That is too, too cool!

Jake is still trying to decide what other special things he wants to do besides eating with the Princesses - which we booked -- SO we are open to any and all suggestions - please remember he is almost 18 and his brothers are almost 14.

I did order a scooter from my mom and it will be delievered to GKTW by 8am on Friday the 28th of January -- we are getting so excited.

Thanks for all the help


[/FONT]

Did you have any trouble with the scooter rental stuff? I have started to use Apple...and if you tell them this is for a wish trip...you may get some pixie dust.

Spent a bit of time on line today as I was off. We went to Disney in December 2009 - stayed at the Polynesian - funny thing as I had booked adjoining handicapped rooms at All Start Sports BUT when I got there they did not have ANY handicapped rooms let alone 2 connecting (this was Christmas week) so they moved us tothe Polynesian and then we went January 2010 and stayed at OKW. In addition we have been there several times when the boys were younger - including Clay's with in 2000

The boys know exactly what rides they want to go at Disney BUT looking for something different - we will be going to Harry Potter World. I also have a coupon for the RIchard Petty Driving Experience that I won at an auction in October so maybe we will do that -- BUT lookinf for things he will like.

The only ADR i have is at Akershus Royal Banquet Hall in Epcot at 8:30 am. I am thinking of making another reservation or 2 - Jake loves steak and mentione Le Cellier Steakhouse which we went to last January BUT not sure we would be at EPCOT at that time. Any suggestions. We have eaten and Tony's another we like. Just looking for a few different suggestions - I have 3 boys all picky eaters (and 2 have g-tubes but eat) and they need to be able to get Chicken or Steak although Cole does love seafood.

That is a mega upgrade!! From All Stars to Poly! SCORE!

I love Crystal Palace...and it seems good for picky eaters because it is a buffet?

Did you see the things GKTW offers? The Pirates Dinner or Medieval Times one? Or the sky diving thing? Or the airplane flight? They have some boy stuff I think they will like!

Ok got the ticker working -- still looking for suggestions for anything special to do with 3 teenage boys. Thanks

Awesome ticker!!

 

[lawblond7]

Hello!!

I linked you on the Wish Trippers thread and decided to come over and post.

Thanks so much


Did you have any trouble with the scooter rental stuff? I have started to use Apple...and if you tell them this is for a wish trip...you may get some pixie dust.

Actually I think I saw your post and that is who I rented from - I called them and they were wonderful. Since my mom will arrive at GKTW before us they are having the scooter delievered next Friday at 8AM


That is a mega upgrade!! From All Stars to Poly! SCORE!

AND since I had booked 2 handicapped adjoining rooms at Sports they gave us 2 rooms at Poly. Exactly a SCORE and we loved it and hence why Jake wanted to stay there again BUT then he decided to go to GKTW

I love Crystal Palace...and it seems good for picky eaters because it is a buffet?
Buffets are good for the boys - they are picky eaters and do to Clay's allergies we have limitations too.

Did you see the things GKTW offers? The Pirates Dinner or Medieval Times one? Or the sky diving thing? Or the airplane flight? They have some boy stuff I think they will like!

What skydiving thing - I think Jake would like that -and we talked about the Pirates Dinner or Medieval times so maybe we will do one of those

Yes my mom STILL rides coasters or at least 2 years ago she did. She said she plans to this year - with the exception I think of the dualing Dragons in Harry Potter world at that is a bottomless rollercoaster and not good for her - although not sure how good it is for me these days either - as I am having a hard time walking lately BUT as I have to push my son's convaid (wheelchair) I have to walk.

We have not been to universal since the twins were about 4 - and they are all teens now and love roller coasters - even with their limitations they can rider them -- wth Clay just have to wait a bit between them to avoid seizures - luckily he has never had one on or after a roller coaster BUT I always have the diastat available. We will probably do another nice dinner somewhere BUT outside the park - BUT unlike others the last 2 trips I had were so planned - Last Janaury we had all our ADRs and such for a 4 days trip booked way in advance - granted we did Le Ceilier and Chefs and Tonys at Parade time, so this time the only thing Jake wants is Princesses and Roller Coasters and to see mom scream on the Tower of Terror - As much as I love Roller Coasters I HATE anything that drops like Tower of Terror BUT because of Clay I had to go on and now they make me just to watch me scream. I am getting TOO Old for this - BUT then again if my 70+ year old mom can ride roller coasters I guess I cannot complain


Awesome ticker!!

Thanks Once I figured it out I was not a totally blonde and clueless lawyer - lol

 

[Mom2mitokids]

We are going to do Ridemaker at DTD with Steven. We are also doing the skydiving thing.

 

[lawblond7]

What is ridemaker? AND what is this skydiving thing that I keep hearing about

 

[Mom2mitokids]

Ridemakerz is like Build a Bear, but you get to make cars. You buy the car shell, than you pick the rims, ect....

http://www.ridemakerz.com/

The Skydiving thing is free through GKTW. Just go to House of heart and say you are interested in the Skydiving. You just ask for the tickets. I don't have much info, Just know it's an indoor skydiving. They go into this room and the wind brings you up like a bird. I'm probably not discribing it right. Ok...I think i found a link..

http://www.iflyorlando.com/ifly-indoor-skydiving

 

[lawblond7]

So we had a slight change in our pre-planning as a VERY close friend of mine and her husband and son who live about 2 1/2 hours south of Orlando will be coming up on Saturday and staying at the Contemporary - we went to Disney with them last January and met them in Savannah this Christmas. We always have a great time together so we are so happy they can meet up with us for a day and a half.

So we revised our visiting park schedule a bit:

What we had planned:

Friday - we arrive not sure what time - so we will decide what to do then. Maybe the Boardwalk or Downtown Disney

Saturday - We have Breakfast at 8:20 booked at Akershus Royal Banquet Hall in EPCOT so Jake can eat with the Princesses. We looked at having dinner or lunch at the Castle BUT Jake is a VERY picky eater so breakfast actually worked best for him - and we are early birds - with the exception of my mom - BUT she will get up if we have to jump on her. Normally I am up at 4:30-4:45 AM during the week, and Jake is up at 5, so we will be OK. After breakfast we will do the rides he wants to do in EPCOT - including Test Track - one his favorites, Soaring - WE love this too and he loves Mission Space - I do not go on this hate be closed in and Clay does not go on do to his seizures - this beleive it or not is the ONLY ride that causes issues in all of the parks - roller coasters are fine BUT this is not good. Also we will do Spaceship earth and Nemo. Then we will most likely head to either Animal Kingdom or Hollywood Studios.

Sunday - This whole day will be spent at Magic Kingdom. We will not start as early in the AM, but will stay late to see the parades and fireworks

Monday - We will do either Animal Kingdom/Hollywood Studios - whichever we do not do on Saturday and then Probably go back to the Magic Kingdom

Tuesday - Will be spent at one of the Universal Parks

Wednesday - Will be spent at the other Univeral Park


AND NOW THIS is the plan:

Friday - we arrive not sure what time - so we will decide what to do then. Maybe the Boardwalk or Downtown Disney

Saturday - We have Breakfast at 8:20 booked at Akershus Royal Banquet Hall in EPCOT so Jake can eat with the Princesses. After breakfast we will do the rides he wants to do in EPCOT - including Test Track - one his favorites, Soaring - WE love this too and he loves Mission Space - I do not go on this hate be closed in and Clay does not go on do to his seizures - this beleive it or not is the ONLY ride that causes issues in all of the parks - roller coasters are fine BUT this is not good. Also we will do Spaceship earth and Nemo. Our friends may meet up with us here if they get up to Orlando early, if not that afternoon we will head to the Magic Kingdom. My friend is a Disney Annual Pass Holder and DEMANDED an ADR so she got us one at 7pm at Crystal Palace - we always eat at Tony's when at the Magic Kingdom so this is good. Granted my boys at 13, 13 and 17 and her son at 9 do not care as much about the characters Clay does love Tigger -- AND dinner will let us out in perfect time to watch WISHES fireworks so all is good (and we willl be near someplace indoors if the fireworks set Clay off which can happen).

Sunday - This whole day was going to be Magic Kingdom BUT now we are going to hit Animal Kingdom in the morning and do lunch at the Rainforest Cafe. Then that night we will go back to the Magic Kingdom - my boys prefer it at night as it is open late that night.

Monday - Hollywood Studios -and then Probably go back to the Magic Kingdom

Tuesday - Will be spent at one of the Universal Parks

Wednesday - Will be spent at the other Univeral Park unless we decide to do something else - all will depend what we get done on Tuesday.

Tomorrow evening at 6:30 the MAKE A WISH Wish Granters will be here at 6:30 pm with an ice cream cake and balloons to have a wish party. Jake's good friend Bryan (who also has mito - they go to school together) will be here along with my friend Cheryl and her daughter. We will get all the paperwork then.

As for what I need to get done - TOO MUCH before we leave next Friday. I have NOT started to pack as this week as been so crazy. Boys were out of school Monday and then they had no school Tuesday do to 1/8 on an inch of snow and some ice - SO I worked at home. Yesterday and today I was not in my office as I was in our Headquarters about an hour drive from home and ouf course on Wednesday Clay got sick in school so I had to track someone down to get him and stay with him until I could get his aide to come by - luckily I reached her - he slept all day and he felt better today. Tomorrow will be work and then the wish party. Saturday AM the boys all have special olympics basketball practice, so hopefully after that I can start to pack.

I do have some of the clothes out as we just got back from Florida (my mom is in Boca) December 31st, so I kept the shorts and bathing suits out. Also last weekend I did do a bit of shopping to get Jake some new shorts - as he has gained some weight which is a good thing. Still need to buy socks for the twins and a few other things. Did get shampoo, etc. Also did make sure I have all the meds - got lots of refills so the meds are all good to go.

Will work on getting most things packed this weekend.

IT is getting close and I am getting nervous like I have so many things to do and SO many things I have not done.

 

[HeatherSP]

Hi I am just catching up on your PTR. I bet your boys are so excited about it being just days away! I can't wait to read your TR and see your pictures!