Make a Wish (and other organizations) ~ Wish Trippers UNITE! Volume FIVE!!

[nesser1981]

Hi and Welcome! We will be there February 27-March 4th for my DD's MAW trip! I'd start a ptr report to help get some of you questions answered.

What questions do you have about Sea World? From what I've researched, its probably the park I know the least about, but it also doesn't seem like it needs a lot of planning. I"m going to try and get the show times for the shows we want to see prior to going and work our day there around that. My DD really wants to go to Sea World, or I'd skip it all together.

Our MAW dates are February 26th - March 3, 2012!! Just a mere 5 weeks away!! So excited! So nervous! So full of emotion!! I am afraid we will miss an opportunity for a memory if I don't plan. But I am afraid I will miss the memory all together if I focus too much on the plan! HELP!!??

Well, I guess I better begin our story...

Timmy was born Feb. 17, 2008 after 2 days of induced/intense labor. After pushing for 3.5 hours, he was brought into the world via emergency C-section. This should have been our first clue: Timmy's abnormally large head size. During his first year of life he was a BIG rambunctious, FULL of life, little boy. He did have a lot of ear/sinus infections and 2 bouts of pneumonia but he was never hospitalized. At his 1 year check up, his pediatrician was concerned about his head size and ordered a CT scan. She also looked at my family history and STRONGLY urged us to have a Genetic specialist look at him. I was scared. My brother died of the disorder she was concerned about and I was living in a happy little place called: Denial. We did go to the appointments and on August 19, 2009 my worst fear was realized: Timmy was diagnosed with Mucopolysaccharidosis (MPS) Type II, commonly called Hunter Syndrome.

MPS II, is a degenerative disorder. Timmy's body lacks the enzyme Iduranate Sulfatase II which is responsible for breaking down all the GAG (cellular waste) in his body. It can cause cognitive delay resulting in death because the brain shuts down. It can cause the heart valves to thicken and malfunction and can cause heart palpitations. It causes the liver and spleen to be enlarged - not working effectively. It causes muscle and joint stiffness. It can cause communicating Hydrocephalism. Most children (boys) with MPS II develop normally until they reach between the ages of 2 and 5. At that time, they regress until death which is usually before the age of 20. All in all it is a grim picture.

Currently Timmy is in the "honeymoon" phase of MPS II. He is still developing normally and is a joy to be around. He receives weekly enzyme replacement therapy (ERT) of the missing enzyme. It will help his physical symptoms but if he shows cognitive delay his weekly treatment will not help. So we wait...

About a year ago, Timmy's OT diagnosed him with Sensory Integration Disorder (SID). Timmy is specifically sensory seeking. He needs deep pressure compression to sort out all the incoming sensory input that his body cannot normally process and sort out. He wears a compression vest, sleeps with a weighted blanket and is on a sensory diet.

Besides Timmy, our family has a daddy, Brent and a mommy, Amy (ME) and a little sister, Claralyn (CLARA). Clara is 2 years younger than Timmy. Timmy's needs and appointments require me to be home full time. Timmy's daddy is a real estate appraiser so you can guess how well that is feeding our family during this housing nightmare. Brent just accepted a job with a management company in Indianapolis so hopefully things work out well for us - he has told them about the MAW trip...we are hoping they honor it. About a year ago in order to help Timmy work on his social skills, I took a part time job working with a friend at her preschool. I teach the preschool class Monday-Thursday mornings, then transport Timmy and another classmate to a special needs preschool where Timmy receives Speech, OT and PT therapies Monday-Thursday afternoons. Every Friday Timmy has swim therapy from 915-10. Then we rush home to meet his nurse, Kathi, and have a 4 hour infusion. No rest for the weary!!

We are excited about his wish because Timmy will get to interact with all the characters he has grown to love on TV and DVDs. We could never afford to make this happen!! We are looking forward to taking it all in...making memories that we can draw on when the road gets rough.

I have begun to gather information on the parks. I am calling Monday to set up extra character meetings, dining reservations, and such. Any suggestions would be great! We are currently a little stumped about SeaWorld. Help?!?

 

[Sean's momma]

I'm so glad you guys had a wonderful time!!

Where you able to get a double stroller at Disney for no additional charge with your GKTW button?

That's awesome you can borrow a stroller from them. We were thinking about just picking up an umbrella stroller for when we went to DTD.

I CANNOT WAIT to read your trip report! We have 30 days and I want to pack now! LOL!

When we went to Disney we just said "we would like a double stroller please" . No problems whatsoever. The first day we went to animal kingdom and we were just going to get a single since we thought it would be enough room, the CM at the stroller rental said to take a double that it would be more comfortable. I would suggest asking to borrow a stroller from GKTW over buying an umbrella stroller personally. It was so much more convenient to have a stroller to and from the car at all the parks and going into stores was much easier with a standard stroller than with a disney parks stroller. Plus the sunshade was nicer, they sit up higher and can see more, and a regular stroller has some amount of recline so they can rest. Make sure you grab a stroller as a wheelchair pass, it will help with keeping the lil ones stamina up if they need it! We got a pass and they gave us a few extra stroller "flags", they are sticky and you put them up where they are visible to the CM's. I will have a picture of one of them soon.

 

[nesser1981]

So you guys ended up using a double stroller from GKTW rather than a Disney stroller?

That sounds perfect! I'm so excited to read your trip report and see pictures. I've become a stalker. LOL!

When we went to Disney we just said "we would like a double stroller please" . No problems whatsoever. The first day we went to animal kingdom and we were just going to get a single since we thought it would be enough room, the CM at the stroller rental said to take a double that it would be more comfortable. I would suggest asking to borrow a stroller from GKTW over buying an umbrella stroller personally. It was so much more convenient to have a stroller to and from the car at all the parks and going into stores was much easier with a standard stroller than with a disney parks stroller. Plus the sunshade was nicer, they sit up higher and can see more, and a regular stroller has some amount of recline so they can rest. Make sure you grab a stroller as a wheelchair pass, it will help with keeping the lil ones stamina up if they need it! We got a pass and they gave us a few extra stroller "flags", they are sticky and you put them up where they are visible to the CM's. I will have a picture of one of them soon.

 

[Sean's momma]

So you guys ended up using a double stroller from GKTW rather than a Disney stroller?

That sounds perfect! I'm so excited to read your trip report and see pictures. I've become a stalker. LOL!

we ended up with a single from gktw instead of a disney double. the disney double was nice but to have the stroller at the end of the day when we are all tired was so much better. and we did learn that at magic kingdom it is much easier to park in regular parking (assuming you don't NEED handicapped parking) and ask for a spot close to the tram. They were more than willing to accomodate us and there was substantially less walking involved. if you park in the handicapped on your magic kingdom day you have to walk under an overpass which is a pretty good incline before you get to the choice of a monorail or a ferry to the park.

 

[nesser1981]

Thanks! Very good advice.

we ended up with a single from gktw instead of a disney double. the disney double was nice but to have the stroller at the end of the day when we are all tired was so much better. and we did learn that at magic kingdom it is much easier to park in regular parking (assuming you don't NEED handicapped parking) and ask for a spot close to the tram. They were more than willing to accomodate us and there was substantially less walking involved. if you park in the handicapped on your magic kingdom day you have to walk under an overpass which is a pretty good incline before you get to the choice of a monorail or a ferry to the park.

 

[mommy2mrb]

Evening all.....have a special request...


One of our previous Wish Kids Kylee (Mom2MitoKids) will be having surgery on Wednesday, this will enable them to give her meds through a tube that will help keep her colon and bowels working better and hopefully make her hospital stays less in the long run.

Please keep this sweet little girl in your thoughts and prayers!

Thank you !!

 

[nesser1981]

Sending prayers to Kylee and her family!

Evening all.....have a special request...


One of our previous Wish Kids Kylee (Mom2MitoKids) will be having surgery on Wednesday, this will enable them to give her meds through a tube that will help keep her colon and bowels working better and hopefully make her hospital stays less in the long run.

Please keep this sweet little girl in your thoughts and prayers!

Thank you !!

 

[blessedmom4]

I haven't been on the wish trippers site in forever; however, I wanted to say to all of the new Wishtrippers! Those of you who are looking forward to your trips will NOT be disappointed, it truly is the most amazing time and so special.

I have just updated our House of Blues Pre-show night for those who have been waiting...the show portion will be in the next installment....which will be soon, I hope...Life continues to get in the way.

Continued prayers for Kylee!

 

[Delaney21]

Prayers for Kylee!

We are also on our way to the hospital and could use some prayers. Michell is having his tonsils out today and this normal quick in and out procedure is a little more complicated for him. Due to his disorder, Mitchell can't have pain medicine without a reaction, so they are doing the old school way of tonsil surgery and cutting them out instead of burning them off because it's supposed to be less painful this way. Since they aren't burning them, they have to add a typical solution to stop the bleeding. The concern is that he will also react to that, so we know he'll be in the hospital for at least one day for observation and hopefully everything goes well and he gets to go home tomorrow. Please say a prayer that he doesn't have a reaction during surgery and that they can get his pain under control.

 

[Delaney21]

Sorry I'm on my phone, duplicate post.

 

[Moodyzblu]

Prayers for Kylee!

We are also on our way to the hospital and could use some prayers. Michell is having his tonsils out today and this normal quick in and out procedure is a little more complicated for him. Due to his disorder, Mitchell can't have pain medicine without a reaction, so they are doing the old school way of tonsil surgery and cutting them out instead of burning them off because it's supposed to be less painful this way. Since they aren't burning them, they have to add a typical solution to stop the bleeding. The concern is that he will also react to that, so we know he'll be in the hospital for at least one day for observation and hopefully everything goes well and he gets to go home tomorrow. Please say a prayer that he doesn't have a reaction during surgery and that they can get his pain under control.

I'll keep Mitchell in my prayers that all goes well.

Also praying for Kylee.

 

[Sean's momma]

Crazy how many kiddos are going in for surgery right now. My son goes in on the 6th of Feb for his 4th set of ear tubes and to make sure he has no regrowth of his adnoid or tonsil tissue. They have to be cautious with him because of his atrial septal defect but thankfully he is only actually under anesthesia for about 10 minutes. Prayers for everyone's kiddos who are going through surgery now/soon. Heck prayers for all our kiddos period!

 

[Sean's momma]

Crazy how many kiddos are going in for surgery right now. My son goes in on the 6th of Feb for his 4th set of ear tubes and to make sure he has no regrowth of his adnoid or tonsil tissue. They have to be cautious with him because of his atrial septal defect but thankfully he is only actually under anesthesia for about 10 minutes. Prayers for everyone's kiddos who are going through surgery now/soon. Heck prayers for all our kiddos period!

 

[Wolfmarsh]

Hi Everyone, my first post here, even though I have been reading for a few weeks now.

My name is John, my wife is Kerri, and our beautiful twins are Kate and Ben. They are around 3 and a half years old. Ben has a Mitochondrial disease where his body can't produce enough energy. He doesn't talk, crawl, walk, or understand very much, but is a loving little boy who absolutely loves Disney (mickey, etc..).

Ben is going on his wish trip from Feb 18-24, 2012, and I just wanted to say thank you for all the information that you have all shared so willingly! I was pointed to these forums by an avid Disney visitor here at work, and she was dead on! Even the information about "pooh-sized" visits is great, since I am pretty pooh-sized myself.

We are staying at GKTW for our trip, and can't wait to have the time of our lives!!

 

[starienite]

Ben is going on his wish trip from Feb 18-24, 2012

That is when we are going to be there.

 

[nesser1981]

Prayers for Mitchell & Sean!

 

[nesser1981]

Welcome John! I hope you're able to find lots of great information. We're leaving February 27th-March 4th for our DD's Make a Wish trip. We are also staying at GKTW.

Hi Everyone, my first post here, even though I have been reading for a few weeks now.

My name is John, my wife is Kerri, and our beautiful twins are Kate and Ben. They are around 3 and a half years old. Ben has a Mitochondrial disease where his body can't produce enough energy. He doesn't talk, crawl, walk, or understand very much, but is a loving little boy who absolutely loves Disney (mickey, etc..).

Ben is going on his wish trip from Feb 18-24, 2012, and I just wanted to say thank you for all the information that you have all shared so willingly! I was pointed to these forums by an avid Disney visitor here at work, and she was dead on! Even the information about "pooh-sized" visits is great, since I am pretty pooh-sized myself.

We are staying at GKTW for our trip, and can't wait to have the time of our lives!!

 

[ALLMama]

Prayers for Mitchell and Sean!

Welcome John!

---
We leave in 24 days and are getting very excited! I haven't done much more in the way of planning as regular life has gotten in the way. I'm hoping to book Chef Mickey and Hollywood and Vine and then will consider it mostly done and leave it up to when we get there.

So it looks like a few of us will be there around the same time. We will be at GKTW 2/23-2/29 and then at Beach Club 2/29-3/4. Hope to bump into some fellow members.

Question: How does MAW handle the baggage fees from the airline? What about transportation to and from the airport?

I would like to not leave my car at the airport for so long and I'm not sure we will be able to get someone to take us as it's a work day for our family.

Also, for those that have gone before, how did your getting through TSA go? I'm kind of worried about all that. I already called TSA Cares and the agent was really nice to me and answered all my questions. Hopeing it will go smoothly. If you have a child with a port, did they set off the alarm or did you just go with the pat down? Did they have any problems with your child wearing a mask (surgical type)? Thankfully they told me he can keep his shoes on! How did they handle meds? Sorry for all the questions. These are the things that keep me awake at night. It's our 1st time traveling since his diagnosis and I get a little parnoid about making sure he's alright.

Oh, don't get me started on the germ thing. Yikes! I keep reading stories about people getting sick at Disney. Tell me to stop reading them. LOL!

 

[Moodyzblu]

Hi Everyone, my first post here, even though I have been reading for a few weeks now.

My name is John, my wife is Kerri, and our beautiful twins are Kate and Ben. They are around 3 and a half years old. Ben has a Mitochondrial disease where his body can't produce enough energy. He doesn't talk, crawl, walk, or understand very much, but is a loving little boy who absolutely loves Disney (mickey, etc..).

Ben is going on his wish trip from Feb 18-24, 2012, and I just wanted to say thank you for all the information that you have all shared so willingly! I was pointed to these forums by an avid Disney visitor here at work, and she was dead on! Even the information about "pooh-sized" visits is great, since I am pretty pooh-sized myself.

We are staying at GKTW for our trip, and can't wait to have the time of our lives!!

Hi John and from another parent to twins !

You're going to have the best time !!

 

[Sean's momma]

Prayers for Mitchell and Sean!

Welcome John!

---
We leave in 24 days and are getting very excited! I haven't done much more in the way of planning as regular life has gotten in the way. I'm hoping to book Chef Mickey and Hollywood and Vine and then will consider it mostly done and leave it up to when we get there.

So it looks like a few of us will be there around the same time. We will be at GKTW 2/23-2/29 and then at Beach Club 2/29-3/4. Hope to bump into some fellow members.

Question: How does MAW handle the baggage fees from the airline? What about transportation to and from the airport?

I would like to not leave my car at the airport for so long and I'm not sure we will be able to get someone to take us as it's a work day for our family.

Also, for those that have gone before, how did your getting through TSA go? I'm kind of worried about all that. I already called TSA Cares and the agent was really nice to me and answered all my questions. Hopeing it will go smoothly. If you have a child with a port, did they set off the alarm or did you just go with the pat down? Did they have any problems with your child wearing a mask (surgical type)? Thankfully they told me he can keep his shoes on! How did they handle meds? Sorry for all the questions. These are the things that keep me awake at night. It's our 1st time traveling since his diagnosis and I get a little parnoid about making sure he's alright.

Oh, don't get me started on the germ thing. Yikes! I keep reading stories about people getting sick at Disney. Tell me to stop reading them. LOL!

I cant guarantee that all MAW chapters are the same, but mine included $25 per person for checked baggage each way and we were able to check bags with medical supplies only for no additional charge. On our way out of Little Rock we had a MAW greeter and he was able to get our baggage fees waived, we asked on the way back but we were told no from orlando. guess it depends on who you speak to? :

We drove ourselves to the airport as we live 2+ hours away and MAW paid for our daily parking fee of $10 a day. I have seen some families get transportation to and from the airports, seems to depend on how close you are to the airport and what is standard for your chapter.

We didn't have any issues getting through TSA, we had medications already bagged into ziploc baggies and out for the scanner, we had liquids and foods for Sean in a bag and they put his sippy cup and the bottle of juice in a machine that scanned it and okay'ed it. I saw people going through with surgical masks with no issues whatsoever. As far as getting sick at Disney, GKTW had good size bottles of hand sanitizer that we took with us and used frequently. Thankfully Sean is obsessed with washing his hands and would use every single sink in the bathroom with soap at each one to wash his hands. It was harder to get him out of the bathroom at times than it was to get him off the rides!! My suggestion regarding TSA would be for you to follow the handicapped/family signs as they are trained more (in my experience) as to how to handle different medical issues. Remember you will never need to leave your kiddos alone! Also, kiddos under 12 don't need to remove their shoes which is a godsend after you get through!

If this is your son's first flight you can talk to the flight attendant and they might get a special surprise, sean got 1st class treats even tho we were in economy and he got extra treats to take with us, plus he got 2 sets of pilots wings!

Thanks for the prayers for Sean!



We just found out that we are going to get to stay at the Ronald McDonald house the night before Sean's surgery which is a blessing considering we live over 2 hours from the hospital. That would not have been a fun ride with a hungry, tired, cranky 4 year old who doesnt understand the reasoning behind what is going on.