Make a Wish (and other organizations) - Wish Trippers UNITE! Volume THREE! :)

[J'sMum]

We don't have a big sister/brother out here. I'm sure she wouldn't do it anyways. I do take her leg pains seriously. I know it's the Mito. I told her I'm talking to the Genetisit next week about it and I switch Peds and taking her the first week of October to see her. I'm always tell her to go sit and relax, but nothing really can be done about it(I don't tell her that).

We really felt the same as you on the second wish, but if you my post down a few..you know why we decided to do it. ((hugs)) Katelynn will see many pixie dust soon.

Oh how unfortunate that they don't have big brotyhr big sisters over your way , was just a quick brain storm idea on my part :/ I have nooo doubts that you are on top of her leg pain,, I hope and pray that i did not make you feel otherwise, I was more or less trying to give an example of how how it is to spin in 2 directions , and I have nooo idea how hard it is to spin in any more then that at all.

LOL you are better then me i have to tell you cause I know at some point those words have slipped out of my mouth to both katelynn and james about well you know there is not much I can do about it Ugh @ those days everything i say seems to come out wrong.

I've read your PTR and I think it is sooo awesome that your other daughter is having a wish granted and yes Katelynn has already had her share of Pixie dust. In fact one of the Mailings that came in from the Big Give was sent special to her which made me melt

My postings was more to try and be helpful and supportive, if they came across any other way i do so apologise. I pride myself on being a very empathetic person sometimes though, postings, even talking outloud things don't come out the way i would really want them to sound *sigh*

 

[Haybuggsmom]

Hey Everyone!!
Checking in!! We are haaving an AMAZING trip!! I can't wait to get home and tell you all of the wonderful things that have happened for us.
Thanks to all of you for your tips and help!!
The kids are already planning the trip for Spring Break to volunteer!!!

 

[Bearshouse]

We have dates!!!!! We didn't think DS10 qualified but we were wrong. We will be at GKTW Dec 11 -17. He picked the trip, the kids just don't know when we are going. No one would sleep till then if they did. Please help me be a great KOTS.



Will do a PTR soon.

Bearshouse

 

[maroo]

Take 2...
I am one of those that didn't want to do a a second trip. We were blessed with a trip of a lifetime. This was our 2nd trip as a family. The other one was a 2 day trip to San Diego. Before our trip the wish granter asked if any of the other kids had Mito. We said that korissa was in the process of getting diagnosed. They said as soon as she does she gets a wish(this was in front of her). When we got back from our trip we became involved with MAW. At each event they asked us if we were going to put referrals for the other kids(at this time we saw the Genetist and it was confirmed that all the kids have Mito, but may not show symptoms...except for Korissa). They kept saying they do many family with multiple kids that all get wishes. It took a year plus(after many talks with the granter and other...in front of the kids) we decided to ask the Ped if she would do it. She said she would. Once she got the referral, she had many question so she called the Northern California chapter and L.A. Chapter and they both said that the child had to be in a life threatening condition at the time of referral. I told the Ped that's not true. The child has to have a life threatening condition, but nothing is stated that they had to be at time at referral. It's in the website. If that's the case...than those kids that are in remission wouldn't qualify. The Ped denied all the kids. They were sad, but understood.

We saw our wish granter at the Holiday party and asked how the referral was going. I told her what happened. She got someone else higher up and we talked...in front of the kids. She couldn't do anything as far as being denied, because what's done is done, but gave me pointer when and if we tried again. We didn't want too. We again saw people from MAW at 2 other fundraisers and told us to do the referral again, but this time just korissa. Again we still weren't ready and not sure we wanted too. In March of this year we did the walk for Wishes and again it was brought up(in front of kids) and we said we will talk with Korissa GI.

Korissa had an appt. late March and we talked to her about it. She said she would do it...if Korissa wanted it...of course she does. A month later she calls me and said she was having problems with the referral. She spoke to the kids Mito specialist and he said Mito wasn't a progressive disease. What!!!...Mito is a progressive disease. Ask any other mito doctor. If that's the case than why is Kylee and korissa getting worse and not better. Kylee went from 1 feeding tube to 2. She went 2 years without being in the hospital to being in the hospital 29 days so far this year. My daughter can't even poop without meds. The GI didn't know what to do. I just asked her to please don't turn the referral in if she couldn't give her her wish. She agreed not to turn it in. I just didn't want another denied letter in the mail.

We had a talk with Korissa and told her this was a good thing. Korissa and Kylee both had another GI appt in July and the GI again brought up MAW...ugh...just when I finally got it out of Korissa mind. She said she got more paper from MAW and that she really wanted to do it, but not sure how. I asked her if I can see the paper and she got it out. I just said if you check this...say it's progressive, and sign your name...Korissa gets a Wish. I told the GI if she felt Korissa deserves a wish than that's great, but if not...that's ok too. I was leavingit up to her. I just want to put this behind us. One week later we get a call from the wish granter that Korissa got her wish.

Because the other kids can't have a wish we asked Korissa if she can choose a trip, so we can all enjoy it. She agreed to it(I know she would of picked a shopping spree...computers). It was her choice to go to Disney World and all the other agreed. We had a blast last time and so much we didn't get to do. That's the long story on the getting the second wish. I don't think the other should get a wish as they have nothing life threatening at this time. I say that because Mito can show it ugly butt anytime.

Back to Kyra.... I don't show favoritizem(sp) to any of my kids. If we buy something for one kid..they all get something. Kyra and I have the closes relationship. She comes to me and we talk. We go shopping together(when I have money...lol) as the other girls likes to stay home, but than she keeps saying Kylee is my favorite and she is my princess. I do tend to her a little more, just the fact she is 7 and she has a lot of medical needs. She has endured 12 surgeries...4 of them major and countless medical procedures. Some I wouldn't even do, but she does them like a trooper. I love all my kids the same and I just wish she would see it. If I take out my camera..the first thing she says...taking pictures of Kylee your princess. If you look at my pics..I take pics of all the kids. Not just one. I wish she can see that too. I think concouling(sp) is what she needs. Maybe finding some pixie dust for her. Today was a hard day. I tried to get the 4 girls to do a creation together, but after 10 min of disagreeing...I finally said that just Korissa and Kylee will be doing it. It was mainly Korissa creation though...lol. If that wasn't bad enough...Our local newspaper was there and talked with Korissa and we talked about Kylee. That's were she lost it. You can see the tears in her eyes. From that moment...she has been in a sad/bad mood. I'm stressed out. I haven't felt well the last week. Stress and Mito don't go well. Sorry for this long post...my other was longer...lol. Just wanted to see what other do. My husband just say..she is 14 and she should understand...hello... how would you feel... that's right... not great when you have 2 sibling that are getting wishes and all the talk is on them. Yes...we said the trip is for all the kids, but Korissa is still going to get more pixie dust than anyone else.

Unless your kids really try to see the differences, I think they will find that at GKTW and the parks they are ALL treated like royalty. So hopefully some of the jealousy will be assuaged by then.

Hey Everyone!!
Checking in!! We are haaving an AMAZING trip!! I can't wait to get home and tell you all of the wonderful things that have happened for us.
Thanks to all of you for your tips and help!!
The kids are already planning the trip for Spring Break to volunteer!!!

Awesome!!!! I can't wait to hear all about it!

We have dates!!!!! We didn't think DS10 qualified but we were wrong. We will be at GKTW Dec 11 -17. He picked the trip, the kids just don't know when we are going. No one would sleep till then if they did. Please help me be a great KOTS.



Will do a PTR soon.

Bearshouse

Awesome!!!

 

[pacrosby]

Hi Pamela! I don't know the answer to your question but wanted to say hey! I have been MIA from the DIS off and on over the last 5 months too. I'm still subscribed to your TR's. We did go to US/IOA for a few days in May thanks to your rave reviews and just loved Seuss Landing!

Hey there! Isn't Seuss Landing a trip? LOL I have been trying to keep the budget for our upcoming December trip to a minimum but have decided we just have to splurge for some time at IOA/US....in particular Suessland at Christmas! Thanks for not giving up on my TR's! Yes I will get back and finish (yes I will yes I will yes I will)

btw we went to PA this summer.................Sesame, Dutch Wonderland and Hershey. Just loved driving through Amish Country. Do you live in that general area? Beautiful.

Hi Pamela! I was just thinking about you yesterday! How are you all doing? I am curious to know this as well as I am thinking of us volunteering on our return trip as well. That is a great idea to do a donation drive! When are you guys going in December?

Hi!!! I can't wait to have the time to just veg on the Dis and read about everyone's trips. I hope you guys had the time of your lives!! Everyone is very well, thanks for asking. Hope you and yours are equally happy and healthy I actually called gktw and asked them about volunteering and they said the kids have to be 10. Bummer. We'll still plan to go and spend the day...........hopefully hit the Christmas party on Thursday night (hope Murphy is there). We'll be going from December 8-15 (our Wish trip was 9-16 so truly an anniversay trip). The lady from gktw said they always need stuffed animals and such so we're thinking of trying to see how many stuffed gingerbread men we could collect for our donation drive

hello! How is Matty? How are you guys?

We are very well, thanks for asking. Matty is just terrific.......has remained healthy throughout the year, just started first grade and is enjoying weekly swimming and tennis lessons (LOVES his tennis). He took a horseback riding program this summer which he loved..............it was absolutely hilarious though, this little tiny peanut with this HUGE horse! The instructor had serious concerns when he first showed up but took it all back in no time. That Matty! He is somethin'

Hope all is well with you.

 

[rcq925]

We have dates!!!!! We didn't think DS10 qualified but we were wrong. We will be at GKTW Dec 11 -17. He picked the trip, the kids just don't know when we are going. No one would sleep till then if they did. Please help me be a great KOTS.



Will do a PTR soon.

Bearshouse

Woo Hoo on dates!! So exciting Looking forward to reading your PTR!

 

[rcq925]

Hey Everyone!!
Checking in!! We are haaving an AMAZING trip!! I can't wait to get home and tell you all of the wonderful things that have happened for us.
Thanks to all of you for your tips and help!!
The kids are already planning the trip for Spring Break to volunteer!!!

So glad you are having an AMAZING trip! Can't wait to hear all about it and see pictures!!!

 

[Bearshouse]

So glad you are having an AMAZING trip! Can't wait to hear all about it and see pictures!!!

Can't wait to hear about your trip!!!

 

[ALLmom]

I found a great deal on a perfect hotel in a perfect location that we could never otherwise afford to stay at but there is one problem... max occupancy is four people and we are a family of five. I am not worried about space because we are only staying for a two nights and the kids are small but I do feel somewhat guilty about violating any rules. How strict are hotels about this with young families?

 

[alaskanabbott]

Sorry to hear about James. I did read his PTR and TR. Kylee did have a muscle biopsy, Korissa has not. How did James get confirmed with MNGIE? Kylee fits it perfectly, but the blood test said no. She does have white matter on her MRI.

He had the deterioration of the white matter, the neuro-disfucntions, the problem with his eyes, the severe dysmotility, reduced muscle mass, and some things from his blood work, but I cannot remember exactly what...I guess just text book. He has a "clinical" diagnosis since we decided against the muscle biopsy, but the neuro said it wasn't really necessary at that point, since everything else was there. I'm not sure if I shared this in my TR, but remember when we found out our other son was having seizures? James' Neuro looked into that son's past medical history and said he believes he also has a Mito disorer. He had very similar problems as James when he turned 12, and was even hospitalized for a bit, and they told us he had JRA, even though it was never his bones but his muscles that hurt. He still has tons of muscle pain, but he is no where near as severe as James. We opted against getting him diagnosed as to not interfere with his career plans.

 

[Mom2mitokids]

Hey Everyone!!
Checking in!! We are haaving an AMAZING trip!! I can't wait to get home and tell you all of the wonderful things that have happened for us.
Thanks to all of you for your tips and help!!
The kids are already planning the trip for Spring Break to volunteer!!!

Glad you all are having a great time. Can't wait to hear all about it.

 

[Mom2mitokids]

We have dates!!!!! We didn't think DS10 qualified but we were wrong. We will be at GKTW Dec 11 -17. He picked the trip, the kids just don't know when we are going. No one would sleep till then if they did. Please help me be a great KOTS.



Will do a PTR soon.

Bearshouse

Yeah on dates!!!!!! Can't wait to read you PTR.

 

[jenb1023]

Hey there! Isn't Seuss Landing a trip? LOL I have been trying to keep the budget for our upcoming December trip to a minimum but have decided we just have to splurge for some time at IOA/US....in particular Suessland at Christmas! Thanks for not giving up on my TR's! Yes I will get back and finish (yes I will yes I will yes I will)

btw we went to PA this summer.................Sesame, Dutch Wonderland and Hershey. Just loved driving through Amish Country. Do you live in that general area? Beautiful.

Seuss Landing was amazing! I would love to see it at Christmas too!

Hershey is about 20 minutes from my house. We have season passes to Hersheypark. Lancaster/Amish Country is about 45 minutes away.

I forgot to quote your answer to Maroo but I am so glad to hear Matty is doing well!!!

 

[Bearshouse]

Here is the link to our PTR

http://www.disboards.com/showthread.php?t=2562475

So excited!

Bearshouse

 

[Manymosi]

I just added an update to our PTR:

http://www.disboards.com/newreply.php?do=postreply&t=2544986

 

[tinytreasures]

I am not a Mom - so I have very little to say on this....

The only thing I would add is that I hope anyone out there that has two children that would qualify for a wish would pursue one for each of their kids.

I know that the whole family "gets" the wish - since it is a trip - but I so firmly believe that each child should feel special and have a special trip for them if they qualify.

I know so many families with two children who qualify that have decided not to pursue the 2nd wish - and I get why...I just think it makes such a difference in the life of the child - a real boost in self esteem and the feeling that they can accomplish something really great - that each child should experience it.

If the family is able - help with some fundraising to offset the cost or pay it forward - but don't hesitate to get two wishes.

That is just my 5 cents.


*and this isn't directed at any one person posting...I feel this way about all of the people I know that live near me, too.*

I hear you Maroo but I still feel guilty about it, like we are taking away from other kids that should get to go too.

 

[crashbb]

I found a great deal on a perfect hotel in a perfect location that we could never otherwise afford to stay at but there is one problem... max occupancy is four people and we are a family of five. I am not worried about space because we are only staying for a two nights and the kids are small but I do feel somewhat guilty about violating any rules. How strict are hotels about this with young families?

They are often pretty strict since it is a fire code violation (so a law, rather than just the hotel out to make money). Often though, a very young child (under 3 usually) doesn't count in the occupancy (but only one child can be not included). Is anyone in your family under 3?

 

[alizesmom]

I hear you Maroo but I still feel guilty about it, like we are taking away from other kids that should get to go too.

I've been off the boards for a few months but your post caught my attention. Our family has had 2 wish trips to WDW and GKTW. We were reassured that our trip would not prevent another child from getting a trip. FWIW, only our first son went on the first trip and he had died prior to our daughter's trip. Our newest son also has had a wish but not a trip. Each of our children has been adopted from the foster system with multiple physical problems. To deny one child a wish because someone else in the family had one would be unkind. karen

 

[kissesbykim]

How do you all handle jealousy? Kyra is so jealous of Korissa and Kylee. Like today...we are going to Cold Stone for Kylee and Korissa to make there ice cream creation for the 30th. She doesn't even want to go. She isn't really looking forward to the trip, because it'll be all about korissa. I feel so bad, but I tell her it's good that you are healthy. I ask her if she wants to be Kylee and be poked hundreds of time and be in the hospital all the time. I also think she makes up her leg pains, so she can get some sympathy. I think that is why Steven act up...to get our attention. Just wondering how everyone else deals with this.

It's hard for siblings to deal with illness.. especially since you have 2 kids with medical problems. Sign up the sibling on www.supersibs.org. They have great programs.

 

[icecreamforbreakfast]

Hi everyone,

We are brand new to the board. Our son was granted a wish trip and we are so looking forward to the trip. Here's a link to his story ...

http://www.disboards.com/showthread.php?t=2563612