Make a wish?

[bosslady_tx]

I thought the same thing about Frank, but I found a website somewhere that actually had a list of diagnoses. All you have to do to know if you qualify is ask you doctor if it is considered life-threatening under Make A Wish. I always forget to ask him when I am in his office. Make A Wish says that your doctor determines whether it is life threatening.

I hope this helps.

Misty

[Ann]

Jack received a Make-A-Wish. Â*As long as your doctor signs off on the form, you will qualify. Â*Make-A-Wish has expanded its criteria so that not only children with terminal illnesses qualify. I know some people have a hard time going forward with a Make-A-Wish because they don't want to think that their child's condition is "terminal", but that is not the determining factor anymore. If you can get your doctor to sign the Make-A-Wish form, which you should be able to do, then I would recommend going for it. Â*It is a wonderful organization and there are many things you can receive outside of a trip. Â*We chose to get Jack a large screen TV and entertainment system because his greatest enjoyment is movies, music and TV. Â*It has been wonderful for him.

I hope you can get a Wish for Kaeric.

Ann

[Esties mom]

Does make a wish have a amount that they will spend on a child? Estie needs a LTV vent. Her Doctor has ordered her one for the extra support it gives and smiv setting. She now has a wheelchair she can push but it does not fit her 251b vent. Our DME company was going to give her someones used one and then decided to wait to see if medicaid would give a higher reembursement for them, they got wind that the docs from childrens hospital had aproached medicaid about this issue. But those of you who know medicaid this could or could not happen. So I am pursuing all avenues. Both Estie and all of us are very fustrated shes making such good progress and held back by her LP10. So thats Esties wish.

[Shari]

So funny that someone asked about this - they MAW people are comming to talk to us this week. Jacob's heart condition and chronic lung disease qualified him. I'm not sure about the vent issue - I've never heard of them buying medical equiptment. I know that when my best friend was a volunteer she said that wishes averaged about $5000. I'm trying to not push what I want on Jacob - but because he is nonverbal, it's difficult. I'm terrible, however. I did teach him to sign Mickey Mouse this week! Seriously, I know that meeting the characters is something that he would enjoy. They are correct on the criteria - my ped signed off that his condition was life threatening. I didn't agree to it at first - and then it hit me: he has chronic lung diesase, a heart full of plastic that they will always have to repair, and he spent the first 3 years of his life of life support - wake up! His condition is life threatening! Still, it's difficult to admit.
-Shari

[Ann]

Estie Mom - unfortunately, Make-A-Wish will not provide medical eqiupment as their wish. They see it as being something fun for the child and they want the idea to come from the child. However, with kids like ours, they rely on the parents to help come up with a wish.

Shari - have fun with your wish-makers, I hope Jacob gets an awesome Wish!

Ann

[Jacob's Mom]

We are looking forward to asking for Jacob's "wish" next year. He wouldn't be too excited right now. Disney is the first thing that comes to mind, but we live in FL and only about 2 1/2 hrs from there, so we can go there anytime. I have to get creative with this one. Maybe a Disney Cruise!!!!!

[Shari]

Jessica-
Jacob doesn't talk, either. They will work with you. In AR, there is a lady with MAW that "specializes" in nonverbal children. You won't be the first, I'm sure. I was really worried about this, too, at first.
-Shari

[Ann]

Jessica Ann - I think you should go ahead and get the form signed. Â*While your doctor may think that Kaeric is stable, from my own personal and recent experience with Jack, these kids on life support (or with only trachs for that matter) can experience a life or death situation at any given moment. Â*In Jack's case, it took only a matter of minutes of being accidently disconnected from his vent and he suffered severe consequences, and, a few minutes more and he might not be with us. Â*Our kids' very condition puts them in the life threatening category and the fact that they aren't "sick" or "acute" doesn't take them out of the category, in my opinion. Â*Furthermore, the fact that Kaeric is stable allows him to actually enjoy a trip, or whatever the wish may be. I don't think your doctor's logic makes much sense.

Feel free to use Jack as an example to your doctor as to why you should be able to proceed with Kaeric's wish. Â*Please get that form signed and do something special for Kaeric. http://www.tracheostomy.com/iB_html/non-cgi/emoticons/biggrin.gif Â*We never know what the future holds.

http://www.tracheostomy.com/iB_html/non-cgi/emoticons/inlove.gif
Ann

[Jacob's Mom]

Ok, let me get this straight: Kaeric's dr doesn't want to refer him to MAW because he isn't unstable?! That is crazy and I think you should go ahead and do it. What is he (the doc) waiting for? I know for sure that if I thought Jacob would enjoy a trip right now, I would be doing it. His pulmo already told me to let him know when we are ready.

I definitely think you should ask the new doc about it. You are not being greedy. Giving kids like ours an amazing experience is what MAW is there for. He (and you) deserve that!

Good luck!

[Ann]

Absolutely ask another doctor. There is no reason you shouldn't get the wish now. Remember, Kaeric qualifies based on his current (stable) condition.

Ann

[Shari]

Jessica-
The MAW people came and to the hospital and we signed the paper work. I think your doc is NUTS! Jacob was decannulated and was running around the hosptial like a crazy person! He is very stable. That is not in their criteria (was in the old criteria). Your child is on life support for goodness sake! I agree with your idea. Wait until June and have the new doc sign. Then, you'll be prepared for anything he can say.
-Shari

[p's mom]

Just wanted to share our experience also. I haven't posted in a very long time but wanted to let you know about us. Parker was "just" granted a wish from Make a Wish. We'll be going to Disney in October or December. (We're waitng on confirmation).

Parker has been decannulated since September 5, 2003. Although alot of his medical "issues" have been resolved...he will always have airway issues. He tires easily and has an odd tone to his voice. I truly believe though he's stable his situation is life threatening. You never know with our kids. http://www.tracheostomy.com/iB_html/non-cgi/emoticons/smile.gif

I would definately reapproach your doc. If you are like us we have many doc's and maybe you should talk to a different doc? Take Care!!!

P's MOM

[Lily's Mom]

Hi Jessica,
We've never really thought about Make A Wish until we saw your post, and we've been checking out their website and talking about it ever since. I don't mean to sound insensitive in any way, but if you look at some of the kids' stories on their website, they are some of the most stable looking kids I've seen. One kid, for example, had a wish to play with a professional hockey team, so he did. Other kids acted in TV shows or movies. Other kids went to Hawaii. I don't see "unstable" kids doing those things. Heck, if Lily could play hockey......

The other thing is this: Ann is absolutely right, we have no guarantees with our kids, and their condition could change any day. When Lily was born we were told she probably wouldn't make it through early infancy, and now that she's going to be three, we actually have to remind ourselves that every day we have with her is a gift, and the next day is never guaranteed to be there. Don't ever put off something wonderful you can do with your child now.

Also, if the doctor that you see on a regular basis is a resident, ask to speak to his/her attending physician, or at least ask if they can discuss it with their attending. If they have any questions, refer them to the MAW website.

Good luck and let us know when you get your trip planned!

http://www.tracheostomy.com/iB_html/non-cgi/emoticons/inlove.gif
Erica (Lily's Mom)

[Shari]

Another comment that I wanted to add: I talked to a lady in the waiting room this week who's child has cancer. They were all set to do MAW and then he relapsed. Apparently, for the kids to travel, they have to have a doc sign off that they are stable enough to travel. If they are "acute", they may not be stable enough.
-Shari

[Triciasmom]

There have been times when I have thought about MAW, but in reality Patricia's condition barely qualifies as life threatening, and we have very high hopes for her to be decanned and "normal" ....someday.

HOWEVER! My opinion, if you are even remotely qualified is WHY WAIT? This is somewhat unrelated, but my parents said for years "when dad retires we will........" Well, just 3 months after my dad retired my mother very suddenly died. All the grand plans they put off, we crushed. This goes for us as parents as well. We need to be careful not to put off our lives entirely, even with our sick kids. Today is the only thing we are promised, healthy or sick. Take advantage of everything you can.

Godspeed

Clare

[Whitney]

I think this is a great idea. Alex is too young, but as soon as he qualifies, I plan on having our doctor complete the paperwork. I have also suggested this to my cousin (her son Jeremy has Acute Lymphocytic Leukemia ALL). This would be wonderful for them!!!

Whitney

[Karen S.]

When Hannah was a baby, one of our nurses told us to check into MAW, but we thought we would wait until Hannah was older and able to enjoy it. She told us that it is not soley for the sick children anymore, but for their families, especially other siblings that have to deal with the stress and pressures of living with a disabled brother or sister.

I have never given it a second thought until now. I laid in bed the other night thinking about whether I should call them now or wait and I thought...what if Hannah is not with us in a year or so. What you guys said about us having no guarantees with our children is so true. I will definitely be checking out their website soon.

Karen