Make a Wish (and other organizations!) - Wish Trippers...UNITE!! Volume 2!

[maroo]

Thank you for the reply. Alpha Mannosidosis is similar to MPS in that they both are Storage Diseases. There are less than 250 diagnosed cases in the world so it gets little funding for research. It took us over 7 years of searching for a diagnosis. She definitely has AM but there's a good chance that she has a second disease as well. She has other symptoms that are not part of Mannosidosis. For example, she is very small for her age weighing only 52lbs when most 15 1/2 year olds are close to double that. Because it took so long and so many tests (many of which were painful) we decided not to look further for the second disease.

Emily is non-verbal. She can make choices from a field of 2 or 3 so hopefully they will allow us to use picture cards for her to choose from.

The wish granter that I talked to talked about a combo trip as well as Bahamas, Hawaii, shopping spree, room makeovers...

Not only am I nervous about the meeting but I've got to find time to clean the house before they get here!

I'm sure that I'll get a lot of information from reading the board.

Thanks again!

That makes sense. When I looked up MA - it sounded a lot like MPS. My friend Rachel has MPS and she was in a clinical trial about 9 years ago where they were trying a new enzyme replacement drug. She still takes that drug each week, which I believe replaces the enzyme lost due to her disease. But it does not cross the blood brain barrier. Rachel also has a spinal cord injury due to a surgery she had. Rachel is 21 and in better health today than she was 2 years ago. She has had several "close calls" in the course of her life, though. It is a miracle she is still alive.

My friend Lauren (pictured below) weighs 65 pounds. She is 16 1/2. She shares clothes with her 10 year old brother. It always cracks me up when they get into a fight about clothes. I don't know any other 16 year old girls that fight with their 10 year old brother over a pair of shorts.

I think they say 90% of our communication is non-verbal? Is that right? It is hard to imagine how to communicate with someone that doesn't use words regularly - but it is easy once you get to know a person.

Thanks Maroo it is nice to be in a place where people understand what the day to day is like.
Im really hoping the collage will make it easier for him to have a starting board on what to say. He does understand that he gets to make a wish but I think the whole thing is just a little overwhelming for him. I made the mistake of talking to him alot about it, well after they left he told me I told him to much and it made him nervous. So I told him we just wont talk about it anymore and when he's ready we'll figure it out.

Maybe I'll just keep the username if it's not offending to anyone. Thanks for the info.

I don't think anyone would be offended by your user name! You are definitely a mom of a wish kid!

Jennifer,
My dd is 8yo but completely non-verbal. She cannot sign, point or make any meaningful sounds. She is learning to use an Augmentive Communication device, but so far has about two words mastered. After her geneticist referred us to MAW, the main chapter office called and asked some questions, one of which was - can she talk. When I replied no, she asked how she communicates and I explained as best I could that her needs are met by a combination of my knowing her, and her schedule, and her facial expressions and tone. She cries, whines, giggles, sighs, etc. There are things in this world that she clearly loves and things she clearly hates, and that is what we used to decide her wish for her. The main office sent a coloring book that asked the questions "what do I wish to be... do... have... go?" If they have that book it would be a good starting point for his ideas to take the shape of words. There are simple sketch illustrations of various wish ideas. You could even paste his collage into the book, as there are blank pages at each section. This is by no means the first time your chapter has had a child who couldn't express himself verbally. Maybe your wish-granters haven't had the experience, but the chapter has. Let him relax about it and it will be no problem to try again.
Welcome to the board!

It is interesting to me how different each MAW chapter is. I know Noah's Mom had a hard time because they would not grant his wish because he could not verbalize it. But Noah's family lives in Canada.

Hopefully they will consider it verbalized if he is able to present a picture of some kind.

Disney is so wonderful to children and families - and the sensory input is very visual in Disney.

 

[maroo]

PhotoPass -

If you are either just getting back or just about to leave in the next couple of weeks on your wish trip - please make sure I know!

Just send me a PM.

I have codes for the few families that will be "missed" by the new PhotoPass promo to Wish Families.

This is only for Families staying at GKTW - as those staying on Disney Property should get a discount code as a part of your Disney reservation (if you don't get a code, please let me know).

In the next month, those of you guys that are going to GKTW may see something from Disney PhotoPass - if you do, please let me know.

I don't want to announce anything officially (and PLEASE don't say anything on that thread on the Community Board that finally fizzled out - as much as I would love to post that Disney came through and agrees with the cause 100%, I just don't want to get the people all worked up again)...

But it does look like Wish Families will be getting a significant discount on PhotoPass CDs. But I want to be sure!

 

[ndloewen]

Yes, we had a tough time at first with the non verbal thing. We had actually first been referred to the Rainbow Society (a different wish granting agency here). Noah was refused a wish from them because he was unable to verbalize what he wanted. This was very upsetting and I think downright prejudice to so many of our children. But they simply stated that it was their policy and I could reapply when my son could verbalize. A ridiculous policy, but unfortunately there ARE some wish foundations that do work this way. I understand the reasoning, but when a child is never able to verbalize, or never able to comprehend the concept of a wish, (not just because of their age, but because of a medical condition), this is just not right.

I then approached the Children's Wish Foundation of Canada. After our doctor's approval, we sat down as a family and discussed what Noah would enjoy most. I was able to just simply tell her over the phone what we thought would be a good wish for Noah and why. She thought that sounded reasonable, and that was that. So easy!! The way it should be. Momofwishkid, I really hope your agency will work with you on this one. But if not, look around to see if there is another wish granting organization in your area that is more understanding and will work with your son's special needs.

 

[maroo]

Yes, we had a tough time at first with the non verbal thing. We had actually first been referred to the Rainbow Society (a different wish granting agency here). Noah was refused a wish from them because he was unable to verbalize what he wanted. This was very upsetting and I think downright prejudice to so many of our children. But they simply stated that it was their policy and I could reapply when my son could verbalize. A ridiculous policy, but unfortunately there ARE some wish foundations that do work this way. I understand the reasoning, but when a child is never able to verbalize, or never about to comprehend the concept of a wish, (not just because of their age, but because of a medical condition), this is just not right.

I then approached the Children's Wish Foundation of Canada. After our doctor's approval, we sat down as a family and discussed what Noah would enjoy most. I was able to just simply tell her over the phone what we thought would be a good wish for Noah and why. She thought that sounded reasonable, and that was that. So easy!! The way it should be. Momofwishkid, I really hope your agency will work with you on this one. But if not, look around to see if there is another wish granting organization in your area that is more understanding and will work with your son's special needs.

I was thinking it was MAW - that is my error! Should I go edit my post?

Nichole - I hope you are doing well. That hug is not big enough...

 

[ndloewen]

Yes - The angel you posted...if you run your mouse over it...in the Smilies section...It is named "Noah." Named after our very own Noah.

Noah was granted a wish and we really did not think he would make it to the trip. I have no idea how many times I thought that precious child was going to be with Jesus. Including around Christmas. And he was critically ill a few more times, I believe, before their trip.

Then their trip intersected with a very, very impromtu trip that I took to Disney and I got to actually meet Noah. After praying for them for months - and never thinking I would ever be able to actually meet them - I felt like I knew them all already.

He is super cute in his pictures. And his videos really show how happy he is. But hanging out with them for a few hours was so awesome. Not just Noah - who is as happy as he looks. Even with tubes going from here to there. But his precious family. Joshua and Kailyn are the perfect brother and sister. Protective over Noah and sweet to each other.

There were several more close calls with Noah. But each time he surprised me and pulled through. Then he really seemed to be doing great. They had a family trip and seemed really healthy.

In late July he got really sick and passed away. It seemed to happen so fast. He had spent weeks in the PICU before and come through. There were many people on the DIS that had followed the ups and downs of his story. The little angel appeared just a few days after he passed away.

Nichole still hangs out with us and posts from time to time. Her faith is amazing.

Thanks for the beautiful words, Maroo. I am so thankful that we were able to meet for a few hours. God had His hand in that one!

And I love that this little guy is still on the boards...

 

[maroo]

Thanks for the beautiful words, Maroo. I am so thankful that we were able to meet for a few hours. God had His hand in that one!!

Yes, He certainly did!

It was pretty surreal. Because I never ever thought I would meet you guys. I had followed your blog for months and prayed and prayed. And then to be able to actually put "people" in 3D to those prayers - it was amazing.

I have met several wish families and other DISers and have really had a good time being able to meet people in real life that I have only known virtually. Many of those will be life-long friends.

But meeting you guys after praying so hard that you would be able to even take that trip was a neat gift from God.

 

[yinyanggirls]

But they simply stated that it was their policy and I could reapply when my son could verbalize. A ridiculous policy, but unfortunately there ARE some wish foundations that do work this way. I understand the reasoning, but when a child is never able to verbalize, or never about to comprehend the concept of a wish, (not just because of their age, but because of a medical condition), this is just not right.

Exactly! My daughter will likely never use words to communicate but there is no question that horses thrill her to the core. She almost hyperventilates around one. (We tried to think of a horsey type wish but nothing came to mind that we couldn't already provide - hippotherapy at school, pony rides at the fair, and I did not want her to "own" one because that would mean I get one more baby to take care of, only that one would weigh a ton). I'm glad that MAW was the organization our doctor referred us to. It would have made me very sad if that were a reason she were denied, and yet, how do you complain about a charity's policy???

 

[yinyanggirls]

I got a call back from dd's wish granter today. She had originally suggested that we might go in Jan or Feb. She just told me that they are full through March. They want me to give them some possible dates in April. I'm scared because I haven't read anything about April yet! Is it hot? Rainy? Crowded? AHHHHH!

Phoebe does not have any school breaks in April so that isn't a factor. She'll just have to miss. Since her school schedule is unusual I don't even know when most kids will have spring break! Any tips on which week would be worst/best?

Also, she said that it was no problem to extend our trip on our own. (Thanks to all the TR's I've read, I already figured that, but it was nice to hear from someone official) DH and I decided after an exciting week of theme parks we would love to have a family vacation to just relax. We haven't taken a trip all together in, hmmm, I can't remember. Other than visiting family I can't think of any. We did go to Hawaii 7 years ago, with my family. Anyway, We are thinking along the lines of some beaches, maybe go up to Savannah and do some carriage rides, etc. So I will need to give her dates for two weeks. One week at GKTW and one on our own. Does anyone know if the weeks there start and end on specific days? Do I need to request we start on a Fri, Sat or Sun? And if anyone has tips for places to go and things to do in FL, GA and maybe even SC, I'm all ears (or eyes, I guess).

 

[yinyanggirls]

Also, anyone know how they worked the rental car when you extend the trip?

 

[maroo]

April...

I am on my phone...so I will be a little brief. I would lean toward mid and late April. Way after Easter week which is busy in Disney.

Weather... It can really vary in FL. Theoretically it should not be too rainy. No hurricanes. It can be warm. Even hot. But not as hot as summer.

I think it is a fine time to go! And may be warm enough to enjoy the beach!

 

[Momofwishkid]

Jennifer,
My dd is 8yo but completely non-verbal. She cannot sign, point or make any meaningful sounds. She is learning to use an Augmentive Communication device, but so far has about two words mastered. After her geneticist referred us to MAW, the main chapter office called and asked some questions, one of which was - can she talk. When I replied no, she asked how she communicates and I explained as best I could that her needs are met by a combination of my knowing her, and her schedule, and her facial expressions and tone. She cries, whines, giggles, sighs, etc. There are things in this world that she clearly loves and things she clearly hates, and that is what we used to decide her wish for her. The main office sent a coloring book that asked the questions "what do I wish to be... do... have... go?" If they have that book it would be a good starting point for his ideas to take the shape of words. There are simple sketch illustrations of various wish ideas. You could even paste his collage into the book, as there are blank pages at each section. This is by no means the first time your chapter has had a child who couldn't express himself verbally. Maybe your wish-granters haven't had the experience, but the chapter has. Let him relax about it and it will be no problem to try again.
Welcome to the board!

Thanks for the welcome. Im so glad I found this board and have people to listen who understand. Im so happy your DD is able to get her wish. The coloring book sounds like a great idea I will have to ask about that. We made a collage today and DS was very excited about it. Of course filling it with alot of Woody and Buzz from Toy story (his absolute favorites) and he even wrote he wishes to go to Disneyworld I was also thinking about making a video of him talking about it since he is OK with talking about it at certain times and gets so excited. He actually asked me today if I would call and tell them to come back tomorrow.

 

[Momofwishkid]

I got a call back from dd's wish granter today. She had originally suggested that we might go in Jan or Feb. She just told me that they are full through March. They want me to give them some possible dates in April. I'm scared because I haven't read anything about April yet! Is it hot? Rainy? Crowded? AHHHHH!

Phoebe does not have any school breaks in April so that isn't a factor. She'll just have to miss. Since her school schedule is unusual I don't even know when most kids will have spring break! Any tips on which week would be worst/best?

Also, she said that it was no problem to extend our trip on our own. (Thanks to all the TR's I've read, I already figured that, but it was nice to hear from someone official) DH and I decided after an exciting week of theme parks we would love to have a family vacation to just relax. We haven't taken a trip all together in, hmmm, I can't remember. Other than visiting family I can't think of any. We did go to Hawaii 7 years ago, with my family. Anyway, We are thinking along the lines of some beaches, maybe go up to Savannah and do some carriage rides, etc. So I will need to give her dates for two weeks. One week at GKTW and one on our own. Does anyone know if the weeks there start and end on specific days? Do I need to request we start on a Fri, Sat or Sun? And if anyone has tips for places to go and things to do in FL, GA and maybe even SC, I'm all ears (or eyes, I guess).

I had put our requested travel dates for Feb. or March. Well looks like if we get everything worked out soon maybe we'll get April as well. If we end up there at the same time maybe we could meet.

 

[yinyanggirls]

I had put our requested travel dates for Feb. or March. Well looks like if we get everything worked out soon maybe we'll get April as well. If we end up there at the same time maybe we could meet.

I'd love to meet up with any friends I make here on the boards. Don't give up on Feb or March, though, because our wishgranter said that "they" can only send so many kids per month and "they" have a lot of wishes right now. But she may have meant "they" as in "our chapter". Keep me posted on what they tell you. I'm going to call her back tomorrow with some dates, but it makes me nervous to be the one to tell them. So much pressure!

 

[mommy_lisa]

yinyangirls

I dont know much about the weather so I can't help you there. As far as checking into GKTW, there are groups of people that arrive every day of the week, so that shouldn't be an issue. Our MAW chapter was looking for dates leaving in the middle of the week becuase airfare is usally cheaper then. A far as the rental car, originally "I think" ( we really didnt discuss it a lot) we were going to have to return the rental and then recheck it out. A few months before our trip MAW called and asked if we wanted to just give them our credit card number and they would just charge us for the extra days after they got the bill. I thinkthey get special rates because we had a minivan and were only charge $35/day, and I thought it would be a lot more.

 

[kdzbear]

Come to Mya Rose's Caring Bridge Page and wish Mya a Happy Birthday!

http://www.caringbridge.org/visit/myaroseharris

She is still fighting her cancer and I am sure she would love for old and new friends to drop by and wish her a Happy Birthday! She made it to 3!

 

[maroo]

Come to Mya Rose's Caring Bridge Page and wish Mya a Happy Birthday!

http://www.caringbridge.org/visit/myaroseharris

She is still fighting her cancer and I am sure she would love for old and new friends to drop by and wish her a Happy Birthday! She made it to 3!

THANK YOU for posting this!!!!



Yes...please...EVERYONE...If you are lurking. Or a past wish family. Or a future wish family.

If you can read.

Please go to her page and tell Mya Happy Birthday.

They are really having a rough time. They really could use our support!

 

[twinmum]

Yes, please send your positive thoughts to us here in Toronto. I know I've been away or just lurking a bit - I've not had much time to post lately and so many wonderful people to help our new Wish Families I knew the thread was well served.

Because I feel you all can relate to our concerns, I thought I'd share that Mark is not well - has all the H1N1 symptoms. Many of you don't know us, so I'll explain that our twins were born >3 months prematurely, have lung damage and asthma from that prematurity and Mark has cerebral palsy that limits his mobility, failure to thrive, g-tube to supplement nutrition etc. Our pediatrician is treating Mark as having H1N1 given his symptoms - he hits them all, unfortunately.

We've started Mark on Tamiflu, have some on hand for Douglas, and we are watching very carefully. We certainly hope to avoid any hospital visits. Here in Toronto, the city has been alarmed by the sudden death of a 13 year old boy with no underlying conditions. As a result, the ER at the Hospital for Sick Children is overwhelmed. I had to go to Sick Kids to get the Tamiflu as the liquid form (for Mark's g-tube) is not available anywhere else. I ran into a nurse we know who said the word in the hospital was that the ER had processed and sent home over 400 children who shouldn't have come to the ER, but been seen by family docs, clinics etc.

We'd appreciate any positive thoughts and prayers you can send our way!

 

[maroo]

Yes, please send your positive thoughts to us here in Toronto. I know I've been away or just lurking a bit - I've not had much time to post lately and so many wonderful people to help our new Wish Families I knew the thread was well served.

Because I feel you all can relate to our concerns, I thought I'd share that Mark is not well - has all the H1N1 symptoms. Many of you don't know us, so I'll explain that our twins were born >3 months prematurely, have lung damage and asthma from that prematurity and Mark has cerebral palsy that limits his mobility, failure to thrive, g-tube to supplement nutrition etc. Our pediatrician is treating Mark as having H1N1 given his symptoms - he hits them all, unfortunately.

We've started Mark on Tamiflu, have some on hand for Douglas, and we are watching very carefully. We certainly hope to avoid any hospital visits. Here in Toronto, the city has been alarmed by the sudden death of a 13 year old boy with no underlying conditions. As a result, the ER at the Hospital for Sick Children is overwhelmed. I had to go to Sick Kids to get the Tamiflu as the liquid form (for Mark's g-tube) is not available anywhere else. I ran into a nurse we know who said the word in the hospital was that the ER had processed and sent home over 400 children who shouldn't have come to the ER, but been seen by family docs, clinics etc.

We'd appreciate any positive thoughts and prayers you can send our way!

I will definitely pray for you guys!

Lauren did really well with the Tamiflu and she is doing fine - so hopefully Mark will do well.

This flu situation is a real mess. Such a scary situation for families.

Hang in there! We are praying! Keep us posted.

 

[2specialkids]

Yes, please send your positive thoughts to us here in Toronto. I know I've been away or just lurking a bit - I've not had much time to post lately and so many wonderful people to help our new Wish Families I knew the thread was well served.

Because I feel you all can relate to our concerns, I thought I'd share that Mark is not well - has all the H1N1 symptoms. Many of you don't know us, so I'll explain that our twins were born >3 months prematurely, have lung damage and asthma from that prematurity and Mark has cerebral palsy that limits his mobility, failure to thrive, g-tube to supplement nutrition etc. Our pediatrician is treating Mark as having H1N1 given his symptoms - he hits them all, unfortunately.

We've started Mark on Tamiflu, have some on hand for Douglas, and we are watching very carefully. We certainly hope to avoid any hospital visits. Here in Toronto, the city has been alarmed by the sudden death of a 13 year old boy with no underlying conditions. As a result, the ER at the Hospital for Sick Children is overwhelmed. I had to go to Sick Kids to get the Tamiflu as the liquid form (for Mark's g-tube) is not available anywhere else. I ran into a nurse we know who said the word in the hospital was that the ER had processed and sent home over 400 children who shouldn't have come to the ER, but been seen by family docs, clinics etc.

We'd appreciate any positive thoughts and prayers you can send our way!

We're praying for your family.
My DS did very well on the Tamiflu. Our pharmacy had to actually compound (make the liquid from pills) his because they have plenty of pills but no liquid. There are only 2 pharmacies around here that do that & thankfully ours is one. DD still got pretty sick but all in all the Tamiflu worked well for all 3 of us. I only got body aches and lethargy since I started it as soon as I started feeling "off".
Rest up and take care of yourself as well as the boys.

 

[StefaniLyn]

Also, anyone know how they worked the rental car when you extend the trip?

I was wondering the same thing. We are extending by 3 days and I assume that we need to return the rental car on the same day we check out of GKTW. I would like to just keep it, but I can probably get a better rate for the car with a little shopping around.

Has anyone done extended a Wish Trip and what did you do with your car rental?