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

[MonkeyManMichael]

Thank you so much for all this great information and taking the time to answer all my questions.

 

[MitoDadMO]

we are in single digits!!!!! 9 more days! luggage is out and packing has started.

 

[LVMom23]

Hi everyone! My oldest daughter (Madison-8)made her wish today, she wishes to go on a Disney Cruise. They are looking in July or August for a 5 day/4 night cruise on the Disney Dream. It would be sooner but Madison is having surgery (pacemaker replacement) in June.

Oh, that sounds just fantastic!! I wish your daughter quick healing with her surgery so she can enjoy herself completely

I was actually this "nurse" for Lauren. You probably have a certified nurse hanging with you guys since it appears she has a vent?

You definitely want to pick this person carefully - as they will really be around a lot during your trip. I can attest to the fact that you really need to have good chemistry for the trip - to keep from having more of a headache than normal.

Actually Hannah is not on a vent. The reason she requires 24-hour care is because she has a tendency to pull her trach out inadvertantly. Usually it is because she is arching her neck (a neuro issue), but if someone doesn't catch it soon after it happens, it could mean real trouble.

Fortunately we have two fantastic nurses that we would feel comfortable with if we decided to ask. The question is do we want to bring someone outside of our family on the trip with us, I guess. Tough call, you know?

Please don't mind this post and feel free to delete it! This is just a post so my daughter can play with the smilies. She's addicted to watching the bananas dance!

That is just too cute!

Those of you that are Facebook Fans of Give Kids the World may have already seen this today but for those that have not, here is an article from the International Association of Amusement Parks highlighting 25 years of Give Kids the World. It includes a very touching story http://www.iaapa.org/industry/funworld/2011/mar/features/gktw25/index.asp

I missed this! Thank you for sharing this. I will have to post this on Hannah's blog so everyone can see how wonderful the place seems to be.

LOL I started my PTR before he was approved because I couldn't help myself!

I'm glad I'm not the only one

we are in single digits!!!!! 9 more days! luggage is out and packing has started.

How incredibly exciting!!!!

 

[LVMom23]

Evening everyone!

How soon after your meeting with the MAW grant volunteers did you hear back on approval, dates, etc? I know, I know, it has only been a couple of days, but my two older kids have already asked me a dozen times if I had heard back yet.

I love seeing the excitement in their faces! We keep warning them though that it MAY not happen for whatever reason. But we ordered a couple of Disney World for Kids books from Amazon for them to pour through.

 

[MitoDadMO]

Evening everyone!

How soon after your meeting with the MAW grant volunteers did you hear back on approval, dates, etc? I know, I know, it has only been a couple of days, but my two older kids have already asked me a dozen times if I had heard back yet.

I love seeing the excitement in their faces! We keep warning them though that it MAY not happen for whatever reason. But we ordered a couple of Disney World for Kids books from Amazon for them to pour through.

I took us about 3 weeks. Most of that was because the Drs kept loosing the paperwork to ok travel.

 

[jwallaceent]

Evening everyone!

How soon after your meeting with the MAW grant volunteers did you hear back on approval, dates, etc? I know, I know, it has only been a couple of days, but my two older kids have already asked me a dozen times if I had heard back yet.

I love seeing the excitement in their faces! We keep warning them though that it MAY not happen for whatever reason. But we ordered a couple of Disney World for Kids books from Amazon for them to pour through.

I was surprised we were contacted within about a week! They had to get clearance from our transplant team and I must say they received that within a couple of days! =) Good Luck and hope you hear really really soon!

 

[jwallaceent]

Wow. Tears once again! That hit close to home--my daughter is 3.5 now and she was a Stage 4 Wilms. The tumour was too big on her right kidney, so the whole organ was removed and she had a lesion on her lung, but luckily, chemo did the trick--it disappeared! She's my own little bald princess now!

That photo of young Princess Alyssa reminds me so much of Brooke!

I am so sorry your little Brooke had to go through all of this! My prayers are with her! Thank goodness the chemo did the trick...and no matter what it takes hair can and will grow back...and I am sure she is just the most beautiful bald princess out there! =) HUGS!!!

 

[tinytreasures]

Evening everyone!

How soon after your meeting with the MAW grant volunteers did you hear back on approval, dates, etc? I know, I know, it has only been a couple of days, but my two older kids have already asked me a dozen times if I had heard back yet.

I love seeing the excitement in their faces! We keep warning them though that it MAY not happen for whatever reason. But we ordered a couple of Disney World for Kids books from Amazon for them to pour through.

for us it was a long wait
Wish granters came on Jan 11 we finally heard back yesterday

 

[mommy2girlswv]

we are in single digits!!!!! 9 more days! luggage is out and packing has started.

Hope the 9days fly by..Have fun on the trip...

 

[Mom2mitokids]

Evening everyone!

How soon after your meeting with the MAW grant volunteers did you hear back on approval, dates, etc? I know, I know, it has only been a couple of days, but my two older kids have already asked me a dozen times if I had heard back yet.

I love seeing the excitement in their faces! We keep warning them though that it MAY not happen for whatever reason. But we ordered a couple of Disney World for Kids books from Amazon for them to pour through.

The wish Granters came the beginning of July and we found out dates the beginning of October. It's been a long 8 months, but we are leaving in 5 days!!! Our first dates was Nov 14th, but that didn't happen(which was a blessing as Kylee was in the hospital) and March was our second choice. My kids can't deal with cold or do the heat, so I thought March was the best month...I hope I'm right.
At our walk last Sat..I was talking with one of our wish granters and she told me that they are now over a year waiting list for Wishes.

 

[maroo]

Actually Hannah is not on a vent. The reason she requires 24-hour care is because she has a tendency to pull her trach out inadvertantly. Usually it is because she is arching her neck (a neuro issue), but if someone doesn't catch it soon after it happens, it could mean real trouble.

Fortunately we have two fantastic nurses that we would feel comfortable with if we decided to ask. The question is do we want to bring someone outside of our family on the trip with us, I guess. Tough call, you know?

This is a tough call.

I think it would sorta boil down to several things...

If MAW would pay for it?

Would they be able to stay with you at GKTW?

Would the layout of GKTW villas (assuming you are staying on site) allow you all to have enough beds?

Would the nurse come to the parks with you to be an extra set of hands? Or just be available at night and have the days off to sleep and have time for themselves?

Would an extra person be helpful at the parks? For example - would there be a time that the rest of the family would be able to ride something and the nurse could watch any child that could not ride?

I think your family could easily still have special "family only" time with the right communication with the nurse. As someone that helps a lot with families - it is nice to have some time alone on these types of trips - it seems to be good for all parties involved - especially if you include someone that is not a blood relative in the mix.

The key is communication with that person so that everyone has an idea of the expectations for how much time they will "work," etc., etc.

I think it helps to have an extra set of hands, but I can see how it would be nice to have a family only trip, too.

Speaking from the experience with Lauren's family - they like the "idea" of a family only trip - but it usually goes south fairly quickly when they have so much work to do taking care of family members that it takes away from what they are trying to accomplish as a family. The best scenario would be the nurse helping as much as possible, but also sort of stay out of the way some too.

It seems, in your case, that it may be a huge blessing to have someone there at night and in the mornings when you are all getting ready to go...but then maybe you could do the parks alone and let the nurse have some "me" time?? Best of all worlds?

 

[maroo]

duplicate...

something is wrong with my computer or the DIS - some sort of "fatal error..."... not good?!?

 

[syammt]

So this is what has been going on since I last did an update. Madison has continued to run low grade fevers and now has an ear infection. Doesn't sound to bad, right? Well, she has tubes in both ears so why is she getting ear infections? Isn't that the whole purpose of having tubes? That was my understanding. So we didn't know until last night that she has an ear infection. She starting crying because her ear was hurting and grandma and I just thought it was because we had washed her hair and water got in her ear. Side note - we are having to wash her hair with her laying on the kitchen counter so her cast doesn't get wet. Well, after getting done she was still crying because it was still hurting. She has a very high tolerance for pain, so I knew something was wrong. I took her temp (100.9) and gave her some Motrin for the pain. She was in grandmas room and she sent her out to me because it looked like to her that Madison had blood in her ear. I looked and yep there was blood in her right ear, so we head to the Children's Close to Home urgent care. Madison was freaking out the whole way there and didn't even want to go because she was afraid they were going to do surgery on her to put the tubes back in. She in now scared to death of being put the sleep. She hates the way it makes her feel. I kept telling her that even if the tubes had come out that they didn't do that kind of stuff at the urgent care.
Another side note - while at urgent care they have to evacuate the building because of a funny smell in one of the rooms and they call 911. Come to find out that someone had put a cigarette in the sharps container in one of the rooms.
We get to urgent care and they are packed. After a 2 hour wait we get back to see the doctor and he says her tube in her left ear is not in the ear drum where it is supposed to be. It is on the side laying in some wax. Her tube in the right ear is fine, but that is the ear she has an infection in. So the infection is sitting under the tube. He puts her on ear drops and says she is on enough other medicine he doesn't want to put her on anything else my mouth. So if she is already on enough medicine then how the hell did she get the ear infection? So now it gets even better. She wakes up this morning and says she can't hear out of her ears. It sounds all soft she says. She wants to go to school because she can hear a little bit. So we get up and get ready for school. She says it keeps coming and going. So I call her pediatrician and let them know what is going on and they see no need to see her about the hearing lose. So I call her immune doctor to let her know about the infection (because we are supposed to watch her closely if she gets an infection so it doesn't get in her blood) and her hearing lose and they don't seem to be to concerned either. I call her ENT because I am thinking she needs to be seen if for nothing else so he can see what is going on with the tube in her left ear. The nurse at the clinic says that it isn't an emergency, but he will give the doctors nurse the message. Oh and he also said not to expect an appointment anytime within the next several weeks. So I wait for the doctors nurse to call me back. In the mean time I send her doctor at NIH an e-mail to let her know what is going on and to make sure she doesn't think Madison needs to be on an oral antibiotic. She e-mails me back and says to keep an eye on her and if the pain and drainage continues let her know and she will get her on something orally. So at this point I am really feeling like nobody gives a crap about what is going on with her even though it is all of them who keep telling me that they want to know when she gets an infection. I am just wanting to take Madison and run away somewhere and forget all about the doctors, medicine and treatments. All of this is starting to effect her also. She crys because she doesn't understand why she keeps getting sick if she takes all this medicine and gets an infusion once a month. She wants to know why her bones keep breaking if she is getting the infusion to help her bones. How am I supposed to help her understand if I don't know the answers myself and nobody will explain it to me? So I am done with it all. I just want to refuse that any of it is even happening, but I can't because if I do who will take care of her? If we stop it all then what will happen? How do I continue to put her through all of this with no explanation as to why it keeps happening if she is doing all that the doctors are telling her to do?

I HATE JOB'S SYNDROME I HATE JOB'S SYNDROME I HATE JOB'S SYNDROME

So finally I get a call back from the nurse for Madison's ENT doctor and he wants to see her Monday morning. Good news right? Well we will see. When I tell Madison she is not going to be happy because all she is going to think is that he is going to want to put the tube back in and fix the one in the right ear. Oh by the way the one in the right ear IS in the drum where it is supposed to be however it is falling out as well. So what am I supposed to do? Do I tell her? I have to because she will figure it out when we get there anyway. Do I tell her she isn't going to have to have tubes put back in? I can't lie to her and I don't know what he is going to want to do. So I will continue to watch her until we go and will tell her Sunday evening about the appointment Monday morning. Give her some peace for a few days or at least not add to her frustration right now.
I don't know what I will ever do if she comes to me and wants to stop it all. She has already wanted to stop taking her meds because she says they don't work anyway. I feel the same way, but don't tell her that. I tell her that if she stops her meds then she could get worse and be in the hospital more. It is working for now, but I know her and it will not work forever.
So we continue to go through the motion of the day and hope and pray that nothing new comes about. At least until we figure this one out. Not sure how much more I can take and even scarier not sure how much more she can take. Why does a 7 year old have to go through all this ****? Just give it all to me.

 

[jj0plin]

Wow, I am so sorry I cannot even imagine what she (and you) have to go through. I cannot believe that her ear infection and hearing loss does not seem urgent to any of those doctors! I hope you can get her in to someone soon and that something is done to help.

 

[jj0plin]

I just received a call from our one of our Wish Volunteers and he told me that our Travel Packet should be mailed out to us this week. He said it would contain all of our travel information and details. I am assuming that it will also contain an expense check, though he did not mention that... there is no way we'd be sent off without one, right? It was something I did not want to ask him because it felt rude but we really don't have the money to eat in the parks etc without one.

He also said that rather than a Send Off Party, they prefer to do a Welcome Back type of party so they can hear lots of great stories and see pictures. He told me to pick a fun place like Chuck E Cheese's and invite Elliot's grandparents, little buddies, etc to attend, but to keep it modest that sounds fun, and something to look forward to after the trip.

 

[mom2pixies]

So tough for a kid to understand--and so difficult for a parent to try to explain. All you want to do is make your kid feel better!

Thinking of Madison and your family and hoping these issues get resolved quickly and that she feels better soon!

 

[maroo]

Oh no! That sounds so frustrating! And painful for all of you guys.

I will keep praying for you guys.

I have no idea what to tell you re: what to tell her...?? Our rule of thumb is to not give out more information than they specifically ask - so we don't tell the kids anything at all. But we don't lie if they ask, either.

I am sure she would be sicker if she was not on any antibiotics? Right? And surely that medicine for her bones works at least some?

So sorry you are going through all of that. Keep fighting for her! Unfortunately you can't count on the doctors to be as passionate as you are...they just can't with so many patients to see...none of them spend hours thinking about your child, I guess...so it is really up to "us" - parents, caregivers, friends - to fight for them.

Bless your heart! Here is a big skittles hug!

 

[maroo]

I just received a call from our one of our Wish Volunteers and he told me that our Travel Packet should be mailed out to us this week. He said it would contain all of our travel information and details. I am assuming that it will also contain an expense check, though he did not mention that... there is no way we'd be sent off without one, right? It was something I did not want to ask him because it felt rude but we really don't have the money to eat in the parks etc without one.

He also said that rather than a Send Off Party, they prefer to do a Welcome Back type of party so they can hear lots of great stories and see pictures. He told me to pick a fun place like Chuck E Cheese's and invite Elliot's grandparents, little buddies, etc to attend, but to keep it modest that sounds fun, and something to look forward to after the trip.

I LOVE the idea of a welcome back party!!

I wish more chapters did that! It is so cool for the kids and parents to share their story...and it gives everyone something to look forward to AFTER the big trip - which is a bit of a letdown...back to the "real" world is harder after going on such an amazing trip.

I personally don't think it is rude at all to ask them about an expense check. I mean...I wouldn't ask "How much extra money are we getting..."...but I might ask (heck, I DID ask) for information so that we could plan our budget. I told them I assumed we would have to pay for some things, but we are trying to get an idea of what sort of budget we need to plan for - and she gave me a general idea of how MAW figured things up and what would and would not be covered by MAW.

The chapters vary greatly, so I would call. I am sure you get something...but no idea how much.

 

[mommy2girlswv]

I just received a call from our one of our Wish Volunteers and he told me that our Travel Packet should be mailed out to us this week. He said it would contain all of our travel information and details. I am assuming that it will also contain an expense check, though he did not mention that... there is no way we'd be sent off without one, right? It was something I did not want to ask him because it felt rude but we really don't have the money to eat in the parks etc without one.

He also said that rather than a Send Off Party, they prefer to do a Welcome Back type of party so they can hear lots of great stories and see pictures. He told me to pick a fun place like Chuck E Cheese's and invite Elliot's grandparents, little buddies, etc to attend, but to keep it modest that sounds fun, and something to look forward to after the trip.

I feel rude too asking questions like that,but they asked us if we had checking acct. to put the expense check into... I was so glad I didn't have to ask that question. I hear they give you a budget sheet for the expense check. I hope our chapter does, that would be great. I'm working on budget now for the money we been saving for the trip.

 

[Loodlow]

Hope Madison is feeling better! Quick question---does anyone know if they have irons and ironing boards at the villas at GKTW?

Thanks!