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

[maroo]

Well, I managed to get Aidan and I H1N1 flu mist today. It took me about 2 hours start to finish, but at least it is somewhat done. I have to get Aidan a second dose in 4 weeks or so, but I hope at that point it should be more readily available. I couldn't get Ian any since he is 5 months and my ped would go along with it. She did also say Ian couldn't get the tamiflu if he does get sick since he is under 1. At least Aidan got his. They were turning away people who didn't fit the "group 1" category, which I was relieved they did. There were a ton of pregnant women and children standing in line.

On a side note to those trying to find it, check with your health department. I talked to a woman in line that works for the Cleveland Clinic and she said their pediatricians were NOT getting any H1N1 vaccines. They want everyone here to go through the health dept. so they can keep track of who gets it. I am glad I stood in line today since Aidan's pediatrician is through the Cleveland Clinic.

Congrats on finding an H1N1 vaccine!!! Truly. Awesome!

We don't have any yet...that I know of. I am at risk...but want to wait for the next round, as I have already had the flu...so I hate to waste a shot on me.

Can you please list exactly what you get with that purchase? I've only been to Disneyland once in recent years, and had pics taken with a photopass. This was last March. If my memory is correct, I was given the card and when I got home I could enter in the number and view all of the images taken for my card. After viewing them I could purchase prints (and possibly the digital file, but not sure about that part). I don't remember being offered a CD, but maybe I wasn't paying attention since we had a whole entourage with us and they only took pics of us once, at the exact same time we took our own.

I assume that the CD is the high quality digital files of all photos taken with your pass. Is there anything else included in the purchase price? I would think that if it is only for files, they are not losing any money on materials by giving it to wish families for free. It does have value, I am a photographer and understand this, but not a significant cost that they can't quickly recoup from other visitors. They already own the cameras, they are already paying the CM to take pics, they will only spend 15 seconds on your family per picture, and the CD price is negligible. They don't mind sacrificing the extra minutes of a CM's time to do special character visits, or just assisting families in the lines, etc. It makes perfect sense to me that they would make some sort of allowance for the CD to be given or more affordably purchased by wish families. Just my .02

This is very true...the actual cost to Disney for the CD itself is marginal. I think the whole process, though, costs Disney a LOT.

Truly - Once the PhotoPass folks heard what I was hoping to accomplish, they were more than accommodating - I expected nothing less of Disney!


PhotoPass has photographers all over the place and will give you a card and then they just scan the number when they take your picture. Then all of your pics are on the card. When you get home you enter the number (or numbers - you can have more than one card) and see your pictures, crop, edit, delete, add cute borders. Then you order the CD and they send it to you with a copyright release.

Thank you so much Maroo for all that you do for our special families. I have to say, I've worked in the medical field since I was 19 (20yrs next month) and until I had the day-to-day of a special needs child I never realized how draining it can be. It's such a huge emotional, physical, mental process every day 24/7. I wouldn't trade my son for ANYTHING in this world-he's priceless in my eyes. Those who give us "the stare" or talk about how we "must be lazy because he's on Medicaid" have no idea what it's like. While there are times I wish they had to walk my path for 1 full 7 day week (24hrs wouldn't explain anything) I still pray that they never have a child who's going in for their 7th brain surgery at 10 weeks old or have a child with Aspergers that has a school system who thinks "she's just being lazy" because she's not "working to potential" and misses frequently due to illness (I don't send my kids if their temp is 99.7 or higher).
I bite my tongue most of the time but there are times when my patience is at it's end and someone elderly gives me a dirty look or makes rude comments because I park in the last van accessible spot so I can get my son's wheelchair out of the van and they must park in a different handicapped space 2 slots down. I have been know to tell them how lucky they are that they can walk and care for themselves & my son has as much right to be in public as they do. (Yes, that was during a rough patch with DS's health.)
I am slowly understanding that many will never "get it" and I'm ok with it now. I just wish they would stay quiet if they have nothing positive to say. We're not all about freebies...just tryin' to make it like everyone else.
God Bless all of you who help us-we appreciate it more than we can ever express. (oh, and I'll be sure to get that code since we leave in a week... )

I honestly, though, was shocked. Stunned. Amazed. at how rude people actually are, though? Really. It was....I can't even speak words to show how sad it is. How sad that they really just missed the whole point. They missed that this was a GOOD day for the families. That the conversation I had with Disney ended on a GREAT note - she appreciated what I was trying to accomplish here and I had a better appreciation of what she was trying to accomplish on her side, too. It was a great exchange...and very Disney-like.

But people don't get it. They assume that everyone is out to get something extra for themselves. They don't understand selflessness. And I am so, so sad for them. Really sad for them.

Remind me to send you the code. I don't have it yet...but she assured me she would send them my way shortly.

If I don't have it before you leave, I will get it by the time you get back.

Thank you, Maroo, for doing what you're doing. I have to say, honestly, that we are one of those families that wouldn't even consider doing the Photopass for $150 because there is no way we could afford it. The trip we are getting from MAW is amazing, but we have no money of our own to spend on that trip. We don't go on vacations. We don't buy clothes. We don't have cable or any other number of things. But we do have lots of medical bills. I don't know what was said on the other threads, but we appreciate all that you do from a place of pure selflessness.

Hugs!

Well...This is one thing that will be taken care of for you guys!

I hope you really enjoy it and take LOTS of pictures with the PhotoPass photographers so that you are able to get some great shots with your family. I am truly excited that it all worked out!


I thought my feelings would be hurt today reading all of the things people were saying. But honestly - they were never hurt - because I knew, beyond a shadow of a doubt - that I was right about this. That this was the right thing to do.

Is there a link? This Wish kid wants to rip some people a new one.

Bless your heart. I am so sorry that I got some of you guys so upset!

I saw your post and I found that you got to say your piece. I am stunned at how people reacted to the thread.

I am glad that you seem to be doing well from your fight with cancer!

Maroo is awesome!
it stinks that people don't understand, it's hard, but i'm happy for them that they don't understand. they could just not say anything at all, though.

I got an email from my wish coordinator last week, and she booked us a character dinner! its a princess one, but i don't know where its at
I'm happy just to eat out at a real restaurant, we don't get a chance to do that here

I am glad that they don't understand what it is like to be in the shoes of many here... But I am very sad that they don't seem to see what it is like to really be selfless. To actually have no agenda. I am just sad.

You guys could be at the Castle - Cinderella's Royal Table. Or it could be in Norway - I can never spell that restaurant! Both are great meals and families that have gone in the past have had a lot of good things to say about it!

 

[macntosh]

Thank you all for coming to my rescue today, by the way!


It has worked out in a VERY GOOD way for our Wish Families.


If you are going to be going on your wish trip in the next couple of weeks...make sure you get a code from me before you leave.

You will find SIGNIFICANT savings. I won't say it... but you will have no trouble affording it.

But we can keep that just over here on the nice thread.

Anyone ever tell you, YOU ROCK!

Surprised you didn't comment on my last post though. It seems some of us are now just ignored.

Just in case you missed it. Mya had her first Audition a few weeks ago and was selected to appear in a real theatrical production here in Dallas. She will be playing a Baby Angel in Dallas Childrens Theater Centers showing of "The Best Christmas Pageant Ever".

Is the price as good as what you paid for PhotoPass?

 

[yinyanggirls]

Those pictures are now priceless...

Nichole, I had already read your TR but somehow missed that Noah was in heaven now. You did a great job on your report because I really felt like I got to know your family, especially the happy smiling boy named Noah.
I just wanted to say thanks for being so open on your blog and sharing these past months with everyone. In a way that's hard to articulate, it helps.

 

[maroo]

Anyone ever tell you, YOU ROCK!

Surprised you didn't comment on my last post though. It seems some of us are now just ignored.

Just in case you missed it. Mya had her first Audition a few weeks ago and was selected to appear in a real theatrical production here in Dallas. She will be playing a Baby Angel in Dallas Childrens Theater Centers showing of "The Best Christmas Pageant Ever".

Is the price as good as what you paid for PhotoPass?

OK...I am about to back through 10 pages of this thread and find my post. I would swear that I responded to this! Because I think it is the coolest thing ever!

I have always wanted to be able to be in a production. That is one thing I just never did do as a child or teenager - but always wanted to!

As far as the Photopass...I think I will hold my comment on that one till I get the official email from the PhotoPass folks.

And any future Wish Trippers threads will be on the disABILITIES Community Board.

Nichole, I had already read your TR but somehow missed that Noah was in heaven now. You did a great job on your report because I really felt like I got to know your family, especially the happy smiling boy named Noah.
I just wanted to say thanks for being so open on your blog and sharing these past months with everyone. In a way that's hard to articulate, it helps.

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.

 

[twinmum]

Maroo: I'm really, really sorry you got the flood of negative comments about the Photopass issue. I know that can happen sometimes on these boards.

After our trip to Disneyland, I tried to give away some free, hard to get passes we hadn't used. I didn't know there was already a thread for passing these along, started my own thread and got negative feedback for not doing things the right way. I was just trying to do something nice - I didn't know there was an official thread! It came right out of the blue. Everyone has their story in this life, and it affects how they react to things.

We all know how much you continue to do for all the Wish Families, and we appreciate it so much. We know that you truly understand the trials that many Wish Families face.

I hope you won't let the negative feedback get you down!

Alison

 

[maroo]

Thank you so much Maroo for all that you do for our special families. I have to say, I've worked in the medical field since I was 19 (20yrs next month) and until I had the day-to-day of a special needs child I never realized how draining it can be. It's such a huge emotional, physical, mental process every day 24/7. I wouldn't trade my son for ANYTHING in this world-he's priceless in my eyes. Those who give us "the stare" or talk about how we "must be lazy because he's on Medicaid" have no idea what it's like. While there are times I wish they had to walk my path for 1 full 7 day week (24hrs wouldn't explain anything) I still pray that they never have a child who's going in for their 7th brain surgery at 10 weeks old or have a child with Aspergers that has a school system who thinks "she's just being lazy" because she's not "working to potential" and misses frequently due to illness (I don't send my kids if their temp is 99.7 or higher).
I bite my tongue most of the time but there are times when my patience is at it's end and someone elderly gives me a dirty look or makes rude comments because I park in the last van accessible spot so I can get my son's wheelchair out of the van and they must park in a different handicapped space 2 slots down. I have been know to tell them how lucky they are that they can walk and care for themselves & my son has as much right to be in public as they do. (Yes, that was during a rough patch with DS's health.)
I am slowly understanding that many will never "get it" and I'm ok with it now. I just wish they would stay quiet if they have nothing positive to say. We're not all about freebies...just tryin' to make it like everyone else.
God Bless all of you who help us-we appreciate it more than we can ever express. (oh, and I'll be sure to get that code since we leave in a week... )

Thank you, Maroo, for doing what you're doing. I have to say, honestly, that we are one of those families that wouldn't even consider doing the Photopass for $150 because there is no way we could afford it. The trip we are getting from MAW is amazing, but we have no money of our own to spend on that trip. We don't go on vacations. We don't buy clothes. We don't have cable or any other number of things. But we do have lots of medical bills. I don't know what was said on the other threads, but we appreciate all that you do from a place of pure selflessness.

Hugs!

Maroo is awesome!
it stinks that people don't understand, it's hard, but i'm happy for them that they don't understand. they could just not say anything at all, though.

I got an email from my wish coordinator last week, and she booked us a character dinner! its a princess one, but i don't know where its at
I'm happy just to eat out at a real restaurant, we don't get a chance to do that here

Maroo: I'm really, really sorry you got the flood of negative comments about the Photopass issue. I know that can happen sometimes on these boards.

After our trip to Disneyland, I tried to give away some free, hard to get passes we hadn't used. I didn't know there was already a thread for passing these along, started my own thread and got negative feedback for not doing things the right way. I was just trying to do something nice - I didn't know there was an official thread! It came right out of the blue. Everyone has their story in this life, and it affects how they react to things.

We all know how much you continue to do for all the Wish Families, and we appreciate it so much. We know that you truly understand the trials that many Wish Families face.

I hope you won't let the negative feedback get you down!

Alison

Thank you all for your sweet comments!

I truly get more out of this than I put in, I assure you. I have met some wonderful people on these boards - lifelong friends.


That thread really did not upset me much. I was shocked. Because I did not see any controversy in what I was putting out there.

And since I was so positive they were all wrong - it really didn't get to me. I was just amazed.

It appears the thread is finally dying and actually looks like it may have ended on a more positive note - thanks to many of you and Webmaster Alex, it never hurts when one of the big wigs come over and sort of "ground" the thread.

 

[MomTo4+more]

I started packing today. We fill up an entire carry-on with nothing but medications, can't even fit in the nebulizer and neb meds. Does that carry-on count in the number of carry-ons I can bring on?

 

[daughtersrus]

I'm new to this thread but not to the Disboards. We're in the beginning stages of planning a wish for my DD (15yo). Emily has a very rare genetic disease called Alpha Mannosidosis.

I spoke with one of our Wish Granters Friday and they are going to be coming to our house next Sunday to meet us. I'm a little nervous as we've never done this before. They're bringing lunch (I'm guessing pizza and ice cream since they asked what Emily's favorite kind of pizza and ice cream is).

We briefly talked about trips and what they've done for other children. We're thinking that Emily may like a Disney Cruise and park trip and he seemed to think that would be fine. He also suggested the Bahamas to swim with dolphins or even Hawaii.

I hope to find some time tomorrow to be able to sit and read this thread. I'm sure that it will be VERY helpful!

Thanks!

 

[maroo]

I'm new to this thread but not to the Disboards. We're in the beginning stages of planning a wish for my DD (15yo). Emily has a very rare genetic disease called Alpha Mannosidosis.

I spoke with one of our Wish Granters Friday and they are going to be coming to our house next Sunday to meet us. I'm a little nervous as we've never done this before. They're bringing lunch (I'm guessing pizza and ice cream since they asked what Emily's favorite kind of pizza and ice cream is).

We briefly talked about trips and what they've done for other children. We're thinking that Emily may like a Disney Cruise and park trip and he seemed to think that would be fine. He also suggested the Bahamas to swim with dolphins or even Hawaii.

I hope to find some time tomorrow to be able to sit and read this thread. I'm sure that it will be VERY helpful!

Thanks!

to the Wish Trippers Thread! We are glad to have you!

Lauren was 15 when she made her wish. She has progressive CP (or at least that is what they were calling it - they have no idea what is really wrong with her).

She really wanted to go to Paris and go shopping. But they would not her fancy wheelchair on the plane and were worried about her baclofen pump.

Give Kids the World is a wonderful place - and definitely magical - but I am not sure how much draw it would have for a teenager. There are things for teens...but it seems like - if she can do ANYTHING...not sure that would trump Hawaii.

Is your daughters condition similar to mucopolysaccharidosis? That is what my friend Rachel has - and it sounds similar?

Each state is different - but most make them choose between a cruise and a park trip. It would be really cool if they could do a short cruise and a few park days, though. Not sure if that would include Give Kids the World, though.

 

[Momofwishkid]

Hi everyone, I am new to this board and have to admit I am really new to any boards so please bear with me if Im doing something wrong.
My DS 8 just got approved for a wish from MAW and we had our first meeting with them today. Well first let me explain his situation, In June of this year he woke up one morning and complained of a headache and started having focal seizures. I rushed him to the ER who did a CT and thats when our lives changed the moment the doctor walked in with a social worker and led my husband and I to that little room and told us my baby has brain tumors and a significant hemmorage and they need to air lift him to the Childrens hospital. Everything happened very fast from there and I was in a state of shock. Well after we got to Childrens and they do an MRI it turns out he has multiple cavernomas (10) spread all throughout his brain and one of them had burst and they needed to do surgery right away. The whole time Im thinking could this have been why he had a developmental delay and sensory issues his whole life. It turns out that yes some of these cavernomas have most likely been there his whole life and his brain hasnt been able to develope properly. Well after the surgery was a very rough time with him suffering from ICU phycosis (sp?) and being completley paralyzed on his left side. Not to mention he still has 9 of these masses and we dont really know how they will deveope but 2 more are already bleeding. So long story short (Sorry) he is left with alot of cognitive and nerological issues. He has gotten back almost all the use his left side after 2 months inpatient rehab. Some of these effects are he gets easily frustrated when asked questions given he cant process information easily and he is very shy. Which leads me to my question our Wish team came out today and DS just couldnt manage to talk to them and got so upset after they left without him making his wish he was completley heartbroken and it broke my heart to hear him crying and saying the feeling just wouldnt let him say it he wanted to so bad but just couldnt deal with all the feelings. So I know the wish has to come from the wish child but what happens in a case like this. I already know he Really wants to go to Disneyworld but how can I tell them without it seeming to come from me and not him?? Im just hoping he dosent have to miss out because he cant deal with the overstimulation and feeling because of his disorder
Im sorry this is so long. I just wanted to let you know why he is having a hard time being able to verbalize to strangers what his wish is. Thanks in advance for any suggestions and Im really hoping to start a pre-trip report once we get this all worked out.
One more thing does anyone know how to change your log-in name?? I made mine before I realized there is a whole forum for wish kids

 

[2specialkids]

Hi everyone, I am new to this board and have to admit I am really new to any boards so please bear with me if Im doing something wrong.
My DS 8 just got approved for a wish from MAW and we had our first meeting with them today. Well first let me explain his situation, In June of this year he woke up one morning and complained of a headache and started having focal seizures. I rushed him to the ER who did a CT and thats when our lives changed the moment the doctor walked in with a social worker and led my husband and I to that little room and told us my baby has brain tumors and a significant hemmorage and they need to air lift him to the Childrens hospital. Everything happened very fast from there and I was in a state of shock. Well after we got to Childrens and they do an MRI it turns out he has multiple cavernomas (10) spread all throughout his brain and one of them had burst and they needed to do surgery right away. The whole time Im thinking could this have been why he had a developmental delay and sensory issues his whole life. It turns out that yes some of these cavernomas have most likely been there his whole life and his brain hasnt been able to develope properly. Well after the surgery was a very rough time with him suffering from ICU phycosis (sp?) and being completley paralyzed on his left side. Not to mention he still has 9 of these masses and we dont really know how they will deveope but 2 more are already bleeding. So long story short (Sorry) he is left with alot of cognitive and nerological issues. He has gotten back almost all the use his left side after 2 months inpatient rehab. Some of these effects are he gets easily frustrated when asked questions given he cant process information easily and he is very shy. Which leads me to my question our Wish team came out today and DS just couldnt manage to talk to them and got so upset after they left without him making his wish he was completley heartbroken and it broke my heart to hear him crying and saying the feeling just wouldnt let him say it he wanted to so bad but just couldnt deal with all the feelings. So I know the wish has to come from the wish child but what happens in a case like this. I already know he Really wants to go to Disneyworld but how can I tell them without it seeming to come from me and not him?? Im just hoping he dosent have to miss out because he cant deal with the overstimulation and feeling because of his disorder
Im sorry this is so long. I just wanted to let you know why he is having a hard time being able to verbalize to strangers what his wish is. Thanks in advance for any suggestions and Im really hoping to start a pre-trip report once we get this all worked out.
One more thing does anyone know how to change your log-in name?? I made mine before I realized there is a whole forum for wish kids

Oohhhhh, sweet little guy. Bless his heart-I'm so sorry he couldn't get out the words. (My DS is non-verbal so it had to come from me.)
I know he's having a dificult time so how about either drawing a picture or use coloring book pages of characters he likes or pull clip art pictures off of the internet and let him make a collage of all the things he'd like to see in Disney. That way he could just give them the picture and if he finds the words-wonderful, if not they will still be able to know what he wants to do because he will have shown them. I'm sure your family isn't the first that had a challenging time finding the words so don't dispair. My experience is that MAW & it's volunteers are wonderful and will work with you to get him where he wants to go.

 

[kmparrish5]

Anyone ever tell you, YOU ROCK!

Surprised you didn't comment on my last post though. It seems some of us are now just ignored.

Just in case you missed it. Mya had her first Audition a few weeks ago and was selected to appear in a real theatrical production here in Dallas. She will be playing a Baby Angel in Dallas Childrens Theater Centers showing of "The Best Christmas Pageant Ever".

Is the price as good as what you paid for PhotoPass?

Congrats on Mya playing the Baby Angel! We just might have to come to one of the performances to see what a great job she does.

 

[kdzbear]

Hi everyone, I am new to this board and have to admit I am really new to any boards so please bear with me if Im doing something wrong.
My DS 8 just got approved for a wish from MAW and we had our first meeting with them today. Well first let me explain his situation, In June of this year he woke up one morning and complained of a headache and started having focal seizures. I rushed him to the ER who did a CT and thats when our lives changed the moment the doctor walked in with a social worker and led my husband and I to that little room and told us my baby has brain tumors and a significant hemmorage and they need to air lift him to the Childrens hospital. Everything happened very fast from there and I was in a state of shock. Well after we got to Childrens and they do an MRI it turns out he has multiple cavernomas (10) spread all throughout his brain and one of them had burst and they needed to do surgery right away. The whole time Im thinking could this have been why he had a developmental delay and sensory issues his whole life. It turns out that yes some of these cavernomas have most likely been there his whole life and his brain hasnt been able to develope properly. Well after the surgery was a very rough time with him suffering from ICU phycosis (sp?) and being completley paralyzed on his left side. Not to mention he still has 9 of these masses and we dont really know how they will deveope but 2 more are already bleeding. So long story short (Sorry) he is left with alot of cognitive and nerological issues. He has gotten back almost all the use his left side after 2 months inpatient rehab. Some of these effects are he gets easily frustrated when asked questions given he cant process information easily and he is very shy. Which leads me to my question our Wish team came out today and DS just couldnt manage to talk to them and got so upset after they left without him making his wish he was completley heartbroken and it broke my heart to hear him crying and saying the feeling just wouldnt let him say it he wanted to so bad but just couldnt deal with all the feelings. So I know the wish has to come from the wish child but what happens in a case like this. I already know he Really wants to go to Disneyworld but how can I tell them without it seeming to come from me and not him?? Im just hoping he dosent have to miss out because he cant deal with the overstimulation and feeling because of his disorder
Im sorry this is so long. I just wanted to let you know why he is having a hard time being able to verbalize to strangers what his wish is. Thanks in advance for any suggestions and Im really hoping to start a pre-trip report once we get this all worked out.
One more thing does anyone know how to change your log-in name?? I made mine before I realized there is a whole forum for wish kids

Do not worry. The wish granters will work with you. My son can not talk. They told us he could sign or point to a picture. He will get the wish he wants. He could even hold a Disney toy when the wish granters come to meet him. You will have a wonderful wish no matter what it is!

 

[maroo]

I started packing today. We fill up an entire carry-on with nothing but medications, can't even fit in the nebulizer and neb meds. Does that carry-on count in the number of carry-ons I can bring on?

How did I miss your post?????

I am so sorry!

You can bring an EXTRA carry-on with all of your medical stuff. Just make sure it is all indeed medical stuff - because they may check it out. But you can bring it! And it doesn't count.

Hi everyone, I am new to this board and have to admit I am really new to any boards so please bear with me if Im doing something wrong.
My DS 8 just got approved for a wish from MAW and we had our first meeting with them today. Well first let me explain his situation, In June of this year he woke up one morning and complained of a headache and started having focal seizures. I rushed him to the ER who did a CT and thats when our lives changed the moment the doctor walked in with a social worker and led my husband and I to that little room and told us my baby has brain tumors and a significant hemmorage and they need to air lift him to the Childrens hospital. Everything happened very fast from there and I was in a state of shock. Well after we got to Childrens and they do an MRI it turns out he has multiple cavernomas (10) spread all throughout his brain and one of them had burst and they needed to do surgery right away. The whole time Im thinking could this have been why he had a developmental delay and sensory issues his whole life. It turns out that yes some of these cavernomas have most likely been there his whole life and his brain hasnt been able to develope properly. Well after the surgery was a very rough time with him suffering from ICU phycosis (sp?) and being completley paralyzed on his left side. Not to mention he still has 9 of these masses and we dont really know how they will deveope but 2 more are already bleeding. So long story short (Sorry) he is left with alot of cognitive and nerological issues. He has gotten back almost all the use his left side after 2 months inpatient rehab. Some of these effects are he gets easily frustrated when asked questions given he cant process information easily and he is very shy.

to the Wish Trippers thread!!!

I am so sorry you have had to go through all of that. Sounds like you guys have really been through a lot. You have found a place here where you can connect with other families that have been through a lot, too.

Which leads me to my question our Wish team came out today and DS just couldnt manage to talk to them and got so upset after they left without him making his wish he was completley heartbroken and it broke my heart to hear him crying and saying the feeling just wouldnt let him say it he wanted to so bad but just couldnt deal with all the feelings. So I know the wish has to come from the wish child but what happens in a case like this. I already know he Really wants to go to Disneyworld but how can I tell them without it seeming to come from me and not him?? Im just hoping he dosent have to miss out because he cant deal with the overstimulation and feeling because of his disorder
Im sorry this is so long. I just wanted to let you know why he is having a hard time being able to verbalize to strangers what his wish is. Thanks in advance for any suggestions and Im really hoping to start a pre-trip report once we get this all worked out.

Oh...How sad! I am so sorry that meeting with the wish granters would cause him stress.

What did the wish granters say? Are they planning to come back?

If they come often and just play with him - or maybe you guys all go somewhere like a playground or something? Would he be more likely to open up? Or would that be too much stimulation for him?

I hope they are planning to come back and get to know him so that he will talk to them.

Ah...maybe he could draw them a picture of things that he likes? All different things? And then he can just show them the picture and maybe that will give him a vehicle to use to talk to them. "Just show them the picture and tell them what the picture is about."

Does he understand the concept of the wish? Or is that also confusing him?

Gosh...sorry for all of the questions.

One more thing does anyone know how to change your log-in name?? I made mine before I realized there is a whole forum for wish kids

There really is no way to change it. You can just get another one. You may have to have a different email address? Not sure if you can get two user names on the same email address? But it is easy to create a new email address and then you can create a new user name.

When you get the new username - which yours is fine, by the way! I am surprised it was not already taken. You can go to the first page of this thread and follow the link that will take you to a thread where you can post 10 times. You can just post numbers or anything. Once you get to a post count of 10, you can send messages, post pictures, start threads, etc...

 

[macntosh]

Congrats on Mya playing the Baby Angel! We just might have to come to one of the performances to see what a great job she does.

If this is something you are really interested in doing. I will get you her performance schedule and if you call in, you can get a friends and family discount. She isn't in every performance, only half of them (17). Most available shows are Friday Evening, Saturday afternoon's two shows, and Sundays two shows.

Just send me a PM if interested.

It's a great show I have been told, with a great story.

 

[daughtersrus]

to the Wish Trippers Thread! We are glad to have you!

Lauren was 15 when she made her wish. She has progressive CP (or at least that is what they were calling it - they have no idea what is really wrong with her).

She really wanted to go to Paris and go shopping. But they would not her fancy wheelchair on the plane and were worried about her baclofen pump.

Give Kids the World is a wonderful place - and definitely magical - but I am not sure how much draw it would have for a teenager. There are things for teens...but it seems like - if she can do ANYTHING...not sure that would trump Hawaii.

Is your daughters condition similar to mucopolysaccharidosis? That is what my friend Rachel has - and it sounds similar?

Each state is different - but most make them choose between a cruise and a park trip. It would be really cool if they could do a short cruise and a few park days, though. Not sure if that would include Give Kids the World, though.

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!

 

[Momofwishkid]

Oohhhhh, sweet little guy. Bless his heart-I'm so sorry he couldn't get out the words. (My DS is non-verbal so it had to come from me.)
I know he's having a dificult time so how about either drawing a picture or use coloring book pages of characters he likes or pull clip art pictures off of the internet and let him make a collage of all the things he'd like to see in Disney. That way he could just give them the picture and if he finds the words-wonderful, if not they will still be able to know what he wants to do because he will have shown them. I'm sure your family isn't the first that had a challenging time finding the words so don't dispair. My experience is that MAW & it's volunteers are wonderful and will work with you to get him where he wants to go.

Thank you I love the idea of a collage grat idea and it could double as a reminder of our trip once were home.

 

[Momofwishkid]

Do not worry. The wish granters will work with you. My son can not talk. They told us he could sign or point to a picture. He will get the wish he wants. He could even hold a Disney toy when the wish granters come to meet him. You will have a wonderful wish no matter what it is!

Thanks for the welcome. After having time to think about it Im sure it will be fine no matter what happens. DS just gets so worked up once he's in that mode and it's NO to everything even if he really does want it.

 

[Momofwishkid]

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.

 

[yinyanggirls]

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!