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

[alexwyn]

I have learned from this board to expect a passing thunderstorm. I checked the weather and it looks like this week in Disney has very little rain but of course next week (our week) it shows more rain Does anyone have any suggestions about where to go or not to go in the rain? Is one park better than another in the rain? Are the parks still open and are people still riding rides in the rain? We are so past excited that even the thought of rain is not going to bring me down

 

[mom2pixies]

I would imagine it depends on your tolerance of rain! But, like you, we'd be too excited NOT to do everything we wanted. As long as it wasn't pouring and storming, I think we'd brave some drizzle. I think most people go prepared with rain ponchos just in case, so it might not be a bad idea to head over to the dollar store and pick up a few before your trip. I would probably think there is enough indoor shows and attractions in each park to keep you guys from being totally soaked. I imagine Epcot would have more indoor attractions than the others, but maybe someone else can confirm this.

My suggestion? Maybe go from ride to indoors to ride to indoors just to change up the pace and keep yourselves semi-dry. And, it'll help to wait out heavy downfalls.

On the bright side--there might be less crowds than usual! Hope it's not too wet!

 

[starienite]

I have only been to WDW, once was with family and once with a class from school.
With my family we went during summer and it seemed like it rained everyday at the same time. I can tell you that if you are at Epcot, don't decide to find shelter in a boat. Me, my mom, and gran did that and was not a lot fun. Boats don't move in the rain. That was a boring couple of hours.

 

[shruley]

Started our trip report! Just left it in the same place as our PTR. First day mostly posted with LOTS of pics. Hope to finish with the spa and star pictures tonight.

http://www.disboards.com/showthread.php?p=41391837&posted=1#post41391837

 

[katieb4]

HI KAREN!!

I am excited to hear that you guys are Disney Dreaming while going through the rest of front line. Gabbie got the call her wish was granted right before we started DI. It has been a fantastic thing to think about. She and I watched many videos about the parks while in the hospital. We even found whole Disney parades on line LOL.

Gabbie is doing ok. She just got finished her last steroid day and is in recovery mode.She seems to be following a one week yuck, second week just kind of "off" and 2 weeks of pretty good. The feeling pretty good part is GREAT, but makes starting again after stinks. G knows that the pill will make her feel ick and cries before she takes it. Stinks. But knowing it could be so much worse helps me anyway. I do my best to keep G distracted.

Anyway....Disney....I've been to Epcot 3 times...and the rest of the parks 2 times, Hubby has been once and the kids have NEVER been! We haven't been able to afford all us going....I'm so excited for them to experience it!

Fun to find you here!

 

[disneymommy78]

HI KAREN!!

I am excited to hear that you guys are Disney Dreaming while going through the rest of front line. Gabbie got the call her wish was granted right before we started DI. It has been a fantastic thing to think about. She and I watched many videos about the parks while in the hospital. We even found whole Disney parades on line LOL.

Gabbie is doing ok. She just got finished her last steroid day and is in recovery mode.She seems to be following a one week yuck, second week just kind of "off" and 2 weeks of pretty good. The feeling pretty good part is GREAT, but makes starting again after stinks. G knows that the pill will make her feel ick and cries before she takes it. Stinks. But knowing it could be so much worse helps me anyway. I do my best to keep G distracted.

Anyway....Disney....I've been to Epcot 3 times...and the rest of the parks 2 times, Hubby has been once and the kids have NEVER been! We haven't been able to afford all us going....I'm so excited for them to experience it!

Fun to find you here!

Thanks! We have been Disney Dreaming for awhile. One of the last "normal" things we did as a family before Leann's DX was our family Disney trip in May of 2010. She started showing symptoms early June and was officially DX in July, so we definitely are looking forward to getting back, even if we have to go at a slower pace and do things a bit differently.

I'm actually listening to Park music right now. Tomorrow Leann has her followup MRI scheduled to check on the damage caused by the HD MTX. We're crossing our fingers for good luck.

I'm so excited for you all to get to experience it as a family! We've been many times in the past, so if you need any tips or anything about touring, feel free to ask!

 

[nuts4wdw]

Hi, I am so excited for all of you MAW families. I am writing with a dissappointing MAW story, and was hoping that maybe someone could offer me a virtual . Anyway, my little guy was encouraged to apply for MAW by one of his therapists, so I finally got up the courage to call MAW. The lady on the phone was sooooo pleasant and nice. Said she would submit the paperwork to dr. Well, I get a call from my son's dr. tonight and he says "I have MAW paperwork for your son and quite honestly I don't know what to do with it." He said that when he received the fax that there were big stars and arrows pointing to the line that the dr. is to sign to decline the wish. He then said "I don't feel comfortable enough to go against their recommendation to deny this wish". So that's it, he denied it. I can't believe that MAW would do that. I'm really upset not because my son didn't get the wish, but by MAW's actions. Probably not the place to post, but I have loved to read your reports that I feel like I'm a "silent member" to this great thread. Thanks for reading and my wish for you is that you all have great trips and make great memories!!!!!

 

[jj0plin]

Hi, I am so excited for all of you MAW families. I am writing with a dissappointing MAW story, and was hoping that maybe someone could offer me a virtual . Anyway, my little guy was encouraged to apply for MAW by one of his therapists, so I finally got up the courage to call MAW. The lady on the phone was sooooo pleasant and nice. Said she would submit the paperwork to dr. Well, I get a call from my son's dr. tonight and he says "I have MAW paperwork for your son and quite honestly I don't know what to do with it." He said that when he received the fax that there were big stars and arrows pointing to the line that the dr. is to sign to decline the wish. He then said "I don't feel comfortable enough to go against their recommendation to deny this wish". So that's it, he denied it. I can't believe that MAW would do that. I'm really upset not because my son didn't get the wish, but by MAW's actions. Probably not the place to post, but I have loved to read your reports that I feel like I'm a "silent member" to this great thread. Thanks for reading and my wish for you is that you all have great trips and make great memories!!!!!

I am so sorry to hear that MAW pointed out to have him sign there, maybe it was a mistake? I haven't been around a whole lot lately so I may have missed your son's background. Does he have a life threatening illness? If so, I wouldn't stop there and would see what else you can do. Maybe call MAW back? If not, check your area for other wish foundations.. I know we have Dream Factory here. Good luck!

 

[mom2pixies]

First --

Second -- I advise you to make a call to MAW and ask why your doctor was directed to decline the wish. Perhaps there was an error--if there wasn't, then perhaps they can give you some reason as to why your would be declined and why someone actually recommended that your doctor sign one way. Doesn't make sense to me that they would even bother to send out paperwork to your doctor if your son didn't already meet the requirements. Why wouldn't the MAW representative just tell you on the phone that, unfortunately, your son didn't qualify? Very strange!

If, after you contact MAW, and the problem isn't sorted out, I'd probably look into other wish organizations--there are some here, like the Sunshine Foundation (the one that Evan is with) or the Rainbow Connection, that are for different types of kids (such as chronically ill children, developmentally delayed, special circumstances, etc.)

Best of luck! I hope this was just a huge misunderstanding and that your son gets his wish granted....

 

[mommy2girlswv]

Post Part 1 of our day at MK!!! come over and check it out!! See what My dd is talking about when she tells people she kissed a rat!! but he not a rat!!!

 

[AJsMom0703]

Does anyone know organizations who grant wishes to children with autism or other neurological issues? We've had physicians tell us to contact GKTW and MAW but our child isn't terminal. Any help is appreciated.

~Karen

 

[maroo]

Hi, I am so excited for all of you MAW families. I am writing with a dissappointing MAW story, and was hoping that maybe someone could offer me a virtual . Anyway, my little guy was encouraged to apply for MAW by one of his therapists, so I finally got up the courage to call MAW. The lady on the phone was sooooo pleasant and nice. Said she would submit the paperwork to dr. Well, I get a call from my son's dr. tonight and he says "I have MAW paperwork for your son and quite honestly I don't know what to do with it." He said that when he received the fax that there were big stars and arrows pointing to the line that the dr. is to sign to decline the wish. He then said "I don't feel comfortable enough to go against their recommendation to deny this wish". So that's it, he denied it. I can't believe that MAW would do that. I'm really upset not because my son didn't get the wish, but by MAW's actions. Probably not the place to post, but I have loved to read your reports that I feel like I'm a "silent member" to this great thread. Thanks for reading and my wish for you is that you all have great trips and make great memories!!!!!

I wonder if this was a mistake???? Like maybe someone at MAW just pointed at the wrong place to sign??

I would call the MAW chapter and if they can't give you a good explanation, then I would call the national MAW chapter. That is simply unacceptable.

The doctor gets to decide.

and yes...Hugs to you!!

 

[starienite]

I agree that calling them and asking for clarification on why they choose to not grant your child a wish.
Ask your doctor what conversation he had with either MAW or the doctor that they consult with.

 

[maroo]

Does anyone know organizations who grant wishes to children with autism or other neurological issues? We've had physicians tell us to contact GKTW and MAW but our child isn't terminal. Any help is appreciated.

~Karen

MAW is now for children with life threatening illnesses instead of terminal illnesses.

I did some research before for organizations that grant wishes to children with autism and could not find one for the state of MS - sometimes Dream Factory and a few others will grant "mini" wishes to children with chronic illnesses as opposed to life threatening illnesses.

To qualify for MAW, it is my understanding that the documentation is similar throughout the country and that a doctor that the child sees has to certify that they have a life threatening illness. It doesn't matter what the diagnosis is - just that it is life threatening for the child.

For example - normally CP would not be a qualifying diagnosis, as it can be mild and something that the child can have through adulthood - but for some children the complications from their CP can be life threatening.

Same with neuro stuff...the child can have a seizure disorder that is really bad and therefore considered life threatening or they can have mild seizures and not be considered life threatening...so it depends on the specific child and situation.

But I would contact MAW - especially if your doctor told you to - because it sounds like they would sign off for the wish???

 

[nuts4wdw]

Hi, thanks for the hugs! My son is 2.5 years old and has numerous medical issues. He started out with premie at 35 weeks old, needing to be resusitated due to an abrutpion, then the hospital accidentally overdosed him to respiratory arrest. Since then he has had seizures, GERD requiring a fundo, left sided weakness, asthma, subglottic stenosis, developmentally delay, hypertension, had pulmonary hypertension and an enlarged heart (now resolved), failure to thrive, is using a gtube, has had a changed in his brain MRI (static encephalopathy), frequent falls, chronic sinus infections, food allergies, chronic diarrhea, metabolic issues, heat and cold insensitivities, and other stuff. He has been diagnosed with "an unknown genetic condition". We are now working on a possible mitochondrial disease diagnosis. He is plugging along, but the future is unknown. He is sceduled for surgery on Friday and the 18th of July. We live in a small town and our dr's are also pretty "small town". He has been through so much in his small time on earth, but we love him so! We don't have a terminal "diagnosis" and I thank God for that everyday! As for the MAW, my dr. never talked to the MAW people just received a fax. The dr. said that usually the only way they (MAW) will accept kiddos is if they have a "death date", that also bothered me I'm not upset that my son didn't get the wish, althought I would love to give him a week of no needles, tests, therapy appts., and dr. appts. I'm just appalled by the way it was handled. I may look at another wish organization, but all the rest seem to require them to be three years old. So I will have to wait. Plus I don't know any that work with the state of Idaho. Anyway, thanks for listening to me rant. I just wanted to follow up with some of the pp that replied back. I want this to be a happy place for all of you deserving families, so I won't be posting much more on here. I will continue to read about all of your adventures, though!!!

 

[mommy2girlswv]

Post Part 2 of our MK day!! Come over and check it out

 

[brookerene]

Hi, thanks for the hugs! My son is 2.5 years old and has numerous medical issues. He started out with premie at 35 weeks old, needing to be resusitated due to an abrutpion, then the hospital accidentally overdosed him to respiratory arrest. Since then he has had seizures, GERD requiring a fundo, left sided weakness, asthma, subglottic stenosis, developmentally delay, hypertension, had pulmonary hypertension and an enlarged heart (now resolved), failure to thrive, is using a gtube, has had a changed in his brain MRI (static encephalopathy), frequent falls, chronic sinus infections, food allergies, chronic diarrhea, metabolic issues, heat and cold insensitivities, and other stuff. He has been diagnosed with "an unknown genetic condition". We are now working on a possible mitochondrial disease diagnosis. He is plugging along, but the future is unknown. He is sceduled for surgery on Friday and the 18th of July. We live in a small town and our dr's are also pretty "small town". He has been through so much in his small time on earth, but we love him so! We don't have a terminal "diagnosis" and I thank God for that everyday! As for the MAW, my dr. never talked to the MAW people just received a fax. The dr. said that usually the only way they (MAW) will accept kiddos is if they have a "death date", that also bothered me I'm not upset that my son didn't get the wish, althought I would love to give him a week of no needles, tests, therapy appts., and dr. appts. I'm just appalled by the way it was handled. I may look at another wish organization, but all the rest seem to require them to be three years old. So I will have to wait. Plus I don't know any that work with the state of Idaho. Anyway, thanks for listening to me rant. I just wanted to follow up with some of the pp that replied back. I want this to be a happy place for all of you deserving families, so I won't be posting much more on here. I will continue to read about all of your adventures, though!!!

You do NOT need a death date.... to qualify for MAW... they do require the issue to be life threatening but not terminal.... my son had kidney failure due to FSGS(won't write the whole name out) and went through a transplant... his disease was life threatening but no longer terminal due to medical advances in the past 60 years. 75 years ago he would have died... but now his chances are pretty high, although not guaranteed that things won't happen. I know of a recent case where a boy in my son's shoes had the transplant and died anyway. So was my son given a 'date'.... no... but was his illness life threatening? Yes. FSGS kills...and praise God that his disease was found becuase he didn't exhibit the extreme symptoms that usually show (although I have to say there were symptoms but I thought they were something else).... I wouldn't be surprised if your son didn't qualify. There are a lot of Mito kids parents who have been on and they might be able to tell you if what their various symptoms have been. It sounds like your son probably does qualify and I wouldn't throw the idea of a wish away. Keep fighting for him....if and when they diagnose him.... try again.. it is worth it...and call the Chapter and explain the situation of what the dr saw.... even if they think he doesn't qualify they shouldn bias the opinion of the dr by putting arrows ets... that is unethical.... Keep us updated!
I guess one things is that I , like many others, had the thought that MAW was for terminal kids, but my social worker informed me otherwise. It just takes a little education to set people straight.... I hope all works well for you and that you can have a better understanding of your son's illness...but most of all cherish your son... he's a blessing and a gift....

 

[maroo]

Hi, thanks for the hugs! My son is 2.5 years old and has numerous medical issues. He started out with premie at 35 weeks old, needing to be resusitated due to an abrutpion, then the hospital accidentally overdosed him to respiratory arrest. Since then he has had seizures, GERD requiring a fundo, left sided weakness, asthma, subglottic stenosis, developmentally delay, hypertension, had pulmonary hypertension and an enlarged heart (now resolved), failure to thrive, is using a gtube, has had a changed in his brain MRI (static encephalopathy), frequent falls, chronic sinus infections, food allergies, chronic diarrhea, metabolic issues, heat and cold insensitivities, and other stuff. He has been diagnosed with "an unknown genetic condition". We are now working on a possible mitochondrial disease diagnosis. He is plugging along, but the future is unknown. He is sceduled for surgery on Friday and the 18th of July. We live in a small town and our dr's are also pretty "small town". He has been through so much in his small time on earth, but we love him so! We don't have a terminal "diagnosis" and I thank God for that everyday! As for the MAW, my dr. never talked to the MAW people just received a fax. The dr. said that usually the only way they (MAW) will accept kiddos is if they have a "death date", that also bothered me I'm not upset that my son didn't get the wish, althought I would love to give him a week of no needles, tests, therapy appts., and dr. appts. I'm just appalled by the way it was handled. I may look at another wish organization, but all the rest seem to require them to be three years old. So I will have to wait. Plus I don't know any that work with the state of Idaho. Anyway, thanks for listening to me rant. I just wanted to follow up with some of the pp that replied back. I want this to be a happy place for all of you deserving families, so I won't be posting much more on here. I will continue to read about all of your adventures, though!!!

Does he have more than one doctor that treats all of that?

I would talk to one of the other doctors and see if they would approve him for a wish. Or have someone else (a nurse or someone like that) who would ask for you guys.

I still think there is something strange about the way the whole thing unfolded...it definitely sounds like you guys have a child that would qualify. Many of the families here, including Lauren, did not have a "death" date.

Please keep posting...I wanna keep up with this.

Or feel free to PM me if you don't want to post here...I understand where you are coming from on that... but this "happy" place is also a place where we can vent to others that understand where we are coming from - good things and bad things. We are basically family over here... Feel free to join us...no matter what!

 

[xanphylus]

Does he have more than one doctor that treats all of that?

I would talk to one of the other doctors and see if they would approve him for a wish. Or have someone else (a nurse or someone like that) who would ask for you guys.

I still think there is something strange about the way the whole thing unfolded...it definitely sounds like you guys have a child that would qualify. Many of the families here, including Lauren, did not have a "death" date.

Please keep posting...I wanna keep up with this.

Or feel free to PM me if you don't want to post here...I understand where you are coming from on that... but this "happy" place is also a place where we can vent to others that understand where we are coming from - good things and bad things. We are basically family over here... Feel free to join us...no matter what!

Agree 100% with what Maroo said! Keep after them and keep posting!

 

[mom2pixies]

Hi, thanks for the hugs! My son is 2.5 years old and has numerous medical issues. He started out with premie at 35 weeks old, needing to be resusitated due to an abrutpion, then the hospital accidentally overdosed him to respiratory arrest. Since then he has had seizures, GERD requiring a fundo, left sided weakness, asthma, subglottic stenosis, developmentally delay, hypertension, had pulmonary hypertension and an enlarged heart (now resolved), failure to thrive, is using a gtube, has had a changed in his brain MRI (static encephalopathy), frequent falls, chronic sinus infections, food allergies, chronic diarrhea, metabolic issues, heat and cold insensitivities, and other stuff. He has been diagnosed with "an unknown genetic condition". We are now working on a possible mitochondrial disease diagnosis. He is plugging along, but the future is unknown. He is sceduled for surgery on Friday and the 18th of July. We live in a small town and our dr's are also pretty "small town". He has been through so much in his small time on earth, but we love him so! We don't have a terminal "diagnosis" and I thank God for that everyday! As for the MAW, my dr. never talked to the MAW people just received a fax. The dr. said that usually the only way they (MAW) will accept kiddos is if they have a "death date", that also bothered me I'm not upset that my son didn't get the wish, althought I would love to give him a week of no needles, tests, therapy appts., and dr. appts. I'm just appalled by the way it was handled. I may look at another wish organization, but all the rest seem to require them to be three years old. So I will have to wait. Plus I don't know any that work with the state of Idaho. Anyway, thanks for listening to me rant. I just wanted to follow up with some of the pp that replied back. I want this to be a happy place for all of you deserving families, so I won't be posting much more on here. I will continue to read about all of your adventures, though!!!

Hi there again,

As everyone has already stated, MAW isn't just for terminal kids. My daughter is a cancer patient--had one of her kidneys removed because of the size of the tumour, but she underwent her chemo and tolerated it very well. Now, she is the picture of health! You wouldn't even guess that a year ago, she was having a major organ removed. And, yes--she will be followed for years because of the cancer--but she is not dying. Your doctor is sadly misinformed if he thinks MAW is just for kids who won't make it--but I can understand that as a lot of people believe that too. Before being encouraged to contact MAW, I thought it was only for terminal or chronic kids, too.

One stipulation that MAW did have (for us anyways) was that the child had to between the ages of 3 and 18 to have a wish granted, so maybe that is the reason your son does not qualify---yet. He hasn't reached the age where he could make a wish.

However, I still find it very strange that the MAW contact wouldn't have made that clear on the phone and why they would have sent out paperwork knowing he was still young. I'd still call an inquire.