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

[Glo's wish]

Update on Madison. We were at a birthday party last evening for Madison's "Grandma Shirl" and she fell and broke her arm and hurt her ankle. This is the worse break she has ever had. It is broke in 2 different places and was out of place. The bigger bone in arm was broke and the bone was beside each other instead of a straight line. Then the other break was on her little bone in the arm as close to the wrist as she could get without it being the wrist and it was out of place also. We were an hour away from our Children's Hospital, but I made it there in 30 minutes. They had a really hard time getting both the bones set. He said when he would get one set and move to the other one to fix it the first one would come out of place again. He finally got it without her having to have surgery. Her ankle was not broke and ended up only being a bad bruise. She came home with a cast on her arm upto her armpit and an air cast on her ankle. She is in a lot of pain, but the meds they gave her are working pretty good.
I just don't know how parents do it everyday. I am so done with all the stuff she has to go through and deal with. It is so frustrating and just not fair. I mean what did our children ever do to deserve the pain they have to endure? Yes as you can tell I am extremely pissed off to put it bluntly. I have given up on faith, trust and believing in GOD.
On a better note I hope everyone has a great Valentines Day.

I understand the anger and fear, but I can also look back and see how much stronger we are now and everything that God has brought us through. It's tough and I AM scared and TIRED, but I know down the road I will be able to look back and see something good that came from what we are currently facing. I can't see it now, but eventually I will. I think all of our kids have touched more hearts than we could ever imagine! Just keep hanging on.[/COLOR]

 

[Mom2Miracles]

Update on Madison. We were at a birthday party last evening for Madison's "Grandma Shirl" and she fell and broke her arm and hurt her ankle. This is the worse break she has ever had. It is broke in 2 different places and was out of place. The bigger bone in arm was broke and the bone was beside each other instead of a straight line. Then the other break was on her little bone in the arm as close to the wrist as she could get without it being the wrist and it was out of place also. We were an hour away from our Children's Hospital, but I made it there in 30 minutes. They had a really hard time getting both the bones set. He said when he would get one set and move to the other one to fix it the first one would come out of place again. He finally got it without her having to have surgery. Her ankle was not broke and ended up only being a bad bruise. She came home with a cast on her arm upto her armpit and an air cast on her ankle. She is in a lot of pain, but the meds they gave her are working pretty good.
I just don't know how parents do it everyday. I am so done with all the stuff she has to go through and deal with. It is so frustrating and just not fair. I mean what did our children ever do to deserve the pain they have to endure? Yes as you can tell I am extremely pissed off to put it bluntly. I have given up on faith, trust and believing in GOD.
On a better note I hope everyone has a great Valentines Day.

I'm so sorry for what happened to Madison last night. It breaks my heart that she is in so much pain. I hope she starts to feel better soon, and the breaks heal smoothly. Lots of

 

[The Lurker]

Does anyone know if the transportation trains around the GKTW Village are wheelchair accessible? Thank you!

All rides at GKTW are wheelchair accessible. The new pool also has plastic wheelchairs for the kids to use.

Katie

 

[syammt]

I'm sorryFirst, Madison and the other kids did not to deserve these problems...but they were allowed to face them...why? I don't know, but I also cannot see the big picture. We live in a fallen world where we have told God to get out, but He has stayed because He loves us. It doesn't mean He heals us of every trial or sickness, but He does give us the strength to face it if we DEPEND on HIM...He didn't spare His OWN Son, but gave HIM up for us all. Don't give up on God, give in to Him. It's tough because our expectations are often not met and we think we are not getting a fair shake in life. But maybe we need to change our expectations. It's okay to be angry... to be frustrated... to vent...to cry...but you also need to focus on the good things... you have a beautiful daughter and even though she has to face a plethora of broken bones (and other things), you can prepare for it and put precautions in place. Having a daughter with special needs can be exhausting....because ultimately you are the one who has to carry her and sometimes you need someone to carry you. We on the boards can lend an ear, give encouragement because each of us in our own way has faced difficulties with an ill child, but ultimately it is God who can and will carry you, and I'll pray that He will show you that He has a plan for you and Madison and this illness, and that it is meant for good not bad.

I understand the anger and fear, but I can also look back and see how much stronger we are now and everything that God has brought us through. It's tough and I AM scared and TIRED, but I know down the road I will be able to look back and see something good that came from what we are currently facing. I can't see it now, but eventually I will. I think all of our kids have touched more hearts than we could ever imagine! Just keep hanging on.[/COLOR]

I'm so sorry for what happened to Madison last night. It breaks my heart that she is in so much pain. I hope she starts to feel better soon, and the breaks heal smoothly. Lots of

Thanks for taking the time to reply. I thought maybe posting something would help, but honestly not in any better of a place. Madison's arm is doing OK as long as I keep meds in here. Fingers are looking a little swollen, but we see the doc tomorrow. Won't be surprised if they have to split her cast. Oh well it's just one more thing to deal with. Every little things seems so HUGE right now.

 

[maroo]

Update on Madison. We were at a birthday party last evening for Madison's "Grandma Shirl" and she fell and broke her arm and hurt her ankle. This is the worse break she has ever had. It is broke in 2 different places and was out of place. The bigger bone in arm was broke and the bone was beside each other instead of a straight line. Then the other break was on her little bone in the arm as close to the wrist as she could get without it being the wrist and it was out of place also. We were an hour away from our Children's Hospital, but I made it there in 30 minutes. They had a really hard time getting both the bones set. He said when he would get one set and move to the other one to fix it the first one would come out of place again. He finally got it without her having to have surgery. Her ankle was not broke and ended up only being a bad bruise. She came home with a cast on her arm upto her armpit and an air cast on her ankle. She is in a lot of pain, but the meds they gave her are working pretty good.
I just don't know how parents do it everyday. I am so done with all the stuff she has to go through and deal with. It is so frustrating and just not fair. I mean what did our children ever do to deserve the pain they have to endure? Yes as you can tell I am extremely pissed off to put it bluntly. I have given up on faith, trust and believing in GOD.
On a better note I hope everyone has a great Valentines Day.

You are not alone.

Many, many, many parents of special needs kids feel this way.


I was talking to one just yesterday that is DONE with everything, too. The only difference is that the only thing she has left to hold on to is her faith in God and it is the only thing keeping her going, honestly.

Hang in there and please know you are not alone.

I hope the next few days are better and that you will find yourself in a much better place, soon.

I'm sorryFirst, Madison and the other kids did not to deserve these problems...but they were allowed to face them...why? I don't know, but I also cannot see the big picture. We live in a fallen world where we have told God to get out, but He has stayed because He loves us. It doesn't mean He heals us of every trial or sickness, but He does give us the strength to face it if we DEPEND on HIM...He didn't spare His OWN Son, but gave HIM up for us all. Don't give up on God, give in to Him. It's tough because our expectations are often not met and we think we are not getting a fair shake in life. But maybe we need to change our expectations. It's okay to be angry... to be frustrated... to vent...to cry...but you also need to focus on the good things... you have a beautiful daughter and even though she has to face a plethora of broken bones (and other things), you can prepare for it and put precautions in place. Having a daughter with special needs can be exhausting....because ultimately you are the one who has to carry her and sometimes you need someone to carry you. We on the boards can lend an ear, give encouragement because each of us in our own way has faced difficulties with an ill child, but ultimately it is God who can and will carry you, and I'll pray that He will show you that He has a plan for you and Madison and this illness, and that it is meant for good not bad.

I could not even come close to saying this any better.



Two thumbs up. and

 

[brookerene]

Thanks for taking the time to reply. I thought maybe posting something would help, but honestly not in any better of a place. Madison's arm is doing OK as long as I keep meds in here. Fingers are looking a little swollen, but we see the doc tomorrow. Won't be surprised if they have to split her cast. Oh well it's just one more thing to deal with. Every little things seems so HUGE right now.

I can understand... I'm sorry she is hurting...hopefully as each day passes it'll get easier... Just like Maroo said...take it day by day...moment by moment. I have found that the small things in life tend to be worse than the big events...they seem to gang up and attack.....and the worst part of it is that you can't run from them....you have to face them... and that is tough. I will be praying for you and I know many others are... know that someone, somewhere is thinking of you.

 

[MitoDadMO]

After reading everyone's issues with getting baggage fee's waived I am thankful we are flying Soutwest from STL to MCO, and a direct flight no less!

I do, however, have a question about boarding. I know that southwest does not do assigned seating, but should let us preboard since Kade has a wheelchair. My question is, do you think they will let our entire group, 6 adults 2 kids, preboard? Our wish technically only includes 2 adults 2 kids, but we can't keep the grandparents from going.

Comments?

 

[sparkers68]

Hi! I am the mother of a two great kids, a 6 yr old daughter and my 12 yr old son! He has been granted a trip from the Sunshine Foundation of Canada!!!! We are so excited!! I have to call my organizer back today with dining reservation ideas---any ideas out there??

 

[MitoDadMO]

Hi! I am the mother of a two great kids, a 6 yr old daughter and my 12 yr old son! He has been granted a trip from the Sunshine Foundation of Canada!!!! We are so excited!! I have to call my organizer back today with dining reservation ideas---any ideas out there??

we are doing Chef Mickey character dining. We would like to do Ohana for dinner but reservations are booked.

 

[brookerene]

Hi! I am the mother of a two great kids, a 6 yr old daughter and my 12 yr old son! He has been granted a trip from the Sunshine Foundation of Canada!!!! We are so excited!! I have to call my organizer back today with dining reservation ideas---any ideas out there??

Welcome! I'm sure someone here will give their suggestions....we are going to Cinderella's Royal Table and Crystal Palace... a lot of people here like Chef Mickey's and Ohana's.
Make sure you start a PTR so we can follow your adventures! To find out how to do it go to post #2!

 

[maroo]

Hi! I am the mother of a two great kids, a 6 yr old daughter and my 12 yr old son! He has been granted a trip from the Sunshine Foundation of Canada!!!! We are so excited!! I have to call my organizer back today with dining reservation ideas---any ideas out there??

to the DIS and the Wish Trippers thread!

Glad you guys got a wish!

I have never heard of the Sunshine Foundation - so that is cool that there is a "new" one to us here.

Are you staying at Give Kids the World?



Personally...I like Askershus (spelling??) in Norway at Epcot, Crystal Palace (Pooh Characters) at the Magic Kingdom and 1900 Park Fare at the Grand Floridian Resort.

Of course there is also the Castle and Chef Mickey's - which are good choices, too.



I would check out http://www.allears.net and click on Dining and they have a huge list of restaurants, including a link to character dining experiences. It will show you which characters are featured at each and should give you a good idea of which ones may be best for your family.

 

[sparkers68]

Thanks Maroo! Wow! I could spend tons of time on the allears website! We will be staying at the Pop Century Resort from May 4-11! Thanks for your input, I spoke to our organizer and let her know that the Crystal Palace or Chef Mickey's sounds great for us! Truth be told we still can't even believe that we get to go!!! We will be driving down from Ontario, Canada to the resort--can't wait!!!

 

[kailatilear]

I can't believe that tomorrow at 6pm, Abby's MAW volunteers will be here for her send off party!!!!

Can someone please tell me what happens at the send off party.

I know they are bringing pizza and a cake

 

[syammt]

We were back at the ER tonight due to Madison's cast being to tight. We were already at the hospital for her immune system doctors appointment and they noticed that her fingers were swollen and discolored and sent us down to the ER after our appointment. They ended up having to cut her cast on both sides and spliting it open some so that the swelling had somewhere to go. After splitting it they put tape around it in three places, so the cast won't come off. Now we have to be extra extra careful that she doesn't bump it because the bones can slip very easily. At least that is what the doctor said. So something else to worry about.
I am so drained and tired and can not sleep. You know when people say they have hit rock bottom? Well, what is below rock bottom? What happens when you feel like you have hit bottom and something else happens to knock you down further?

 

[tinytreasures]

We were back at the ER tonight due to Madison's cast being to tight. We were already at the hospital for her immune system doctors appointment and they noticed that her fingers were swollen and discolored and sent us down to the ER after our appointment. They ended up having to cut her cast on both sides and spliting it open some so that the swelling had somewhere to go. After splitting it they put tape around it in three places, so the cast won't come off. Now we have to be extra extra careful that she doesn't bump it because the bones can slip very easily. At least that is what the doctor said. So something else to worry about.
I am so drained and tired and can not sleep. You know when people say they have hit rock bottom? Well, what is below rock bottom? What happens when you feel like you have hit bottom and something else happens to knock you down further?

hugs
I am sorry you are burned out. It will get better I promise

 

[maroo]

We were back at the ER tonight due to Madison's cast being to tight. We were already at the hospital for her immune system doctors appointment and they noticed that her fingers were swollen and discolored and sent us down to the ER after our appointment. They ended up having to cut her cast on both sides and spliting it open some so that the swelling had somewhere to go. After splitting it they put tape around it in three places, so the cast won't come off. Now we have to be extra extra careful that she doesn't bump it because the bones can slip very easily. At least that is what the doctor said. So something else to worry about.
I am so drained and tired and can not sleep. You know when people say they have hit rock bottom? Well, what is below rock bottom? What happens when you feel like you have hit bottom and something else happens to knock you down further?

I am so sorry!!

I wish you could talk to my friend...I have not been there, but she has...thing just keep happening and happening and happening...and every time I think it could not get worse...it does.

But things are starting to look up for them.

Hang in there!!!!

You can do it!

 

[Mom2Miracles]

We were back at the ER tonight due to Madison's cast being to tight. We were already at the hospital for her immune system doctors appointment and they noticed that her fingers were swollen and discolored and sent us down to the ER after our appointment. They ended up having to cut her cast on both sides and spliting it open some so that the swelling had somewhere to go. After splitting it they put tape around it in three places, so the cast won't come off. Now we have to be extra extra careful that she doesn't bump it because the bones can slip very easily. At least that is what the doctor said. So something else to worry about.
I am so drained and tired and can not sleep. You know when people say they have hit rock bottom? Well, what is below rock bottom? What happens when you feel like you have hit bottom and something else happens to knock you down further?

Oh no, I hope them cracking the cast makes a difference in how she is feeling. As for hitting rock bottom, I know having a sick child can be beyond stressful at times. Have you thought of seeing a counsellor or therapist? At some point, if you don't get any help or relief, you are going to snap. And you can't, you need to be strong for Madison. She needs you. Even though this is so hard on you, its harder on her. You need a support system, and an outlet for YOU to vent, and get emotional and let it all out. I hope you can find that.

 

[LindaBabe]

We were back at the ER tonight due to Madison's cast being to tight. We were already at the hospital for her immune system doctors appointment and they noticed that her fingers were swollen and discolored and sent us down to the ER after our appointment. They ended up having to cut her cast on both sides and spliting it open some so that the swelling had somewhere to go. After splitting it they put tape around it in three places, so the cast won't come off. Now we have to be extra extra careful that she doesn't bump it because the bones can slip very easily. At least that is what the doctor said. So something else to worry about.
I am so drained and tired and can not sleep. You know when people say they have hit rock bottom? Well, what is below rock bottom? What happens when you feel like you have hit bottom and something else happens to knock you down further?

No good advice for you - just

 

[CeraMomof3]

This is how I've felt just before I've found my inner advocate. What else CAN be done for her? What would make things easier on both of you?

 

[CeraMomof3]

Hit enter before I was done, OOPS!

When Mila was 1, no one but me knew she was sick. I'd been taking her to the doctor for a YEAR almost weekly. I knew there was something wrong, and all i got from everyone was that she looked okay, they didn't see anything. It got to the point where I broke down and thought " Am I doing this to her? Am I making her sick somehow? Is the problem... me?"

Just a few days later, I took her to the hospital ( again ) for a fever and dumped it all on the doctor. I told him I couldn't take her home if he couldn't find out what was wrong. They admitted us for " observation " ( pretty sure they were observing ME )... and found that she was in heart failure and close to death. I wasn't the crazy one. I was the one who was saving my child. I was her only advocate. If I hadn't pushed, and pushed, and pushed... she'd be dead.

When I hit rock bottom ( we've had two brain surgeries, rock bottom is my second home ), I try to remember that feeling. Standing in the hallway, saying " I saved her. Not them. Me. I did this. I saved her. I am her only advocate and I must be strong. " While it doesn't fix anything, it does help a little.

Thinking of both of you ( and everyone else)....


Sarah K