Madison's Special Wish Foundation Trip/GKTW

[syammt]

Congrats on the Big Give package. How exciting!!! She looks absolutely beautiful in her dress!

Thank you so much. She loves it.

What a great outfit!
Just jumping on board to follow along! Hope Madison is feeling better! My dd just turned 7 (going on 13 at least - lol!)

Thanks for following along. I know what you mean about the going on 13.

Ooooh, she looks so cute ( and sassy I must add - lol)!!! Ellen - you did a GREAT job!! Glad Madison loved it!!!! YAY !!!!

Very sassy sometimes - lol!!! Thanks for all you did to get Madison hooked up with the Big Give.

Yay, so glad it got there and she likes it! You're welcome, I love seeing the pictures of her smiling, thanks!!

Thanks for being the one to put that smile on her face.

What a fighter you have there
Hope they find the right med combo for her soon
our 10yr old just got out of 2 leg casts on thursday they are a pain but she needs them to stretch her muscles out

She really is a fighter and never complains. Actually waiting for the doc to call back with what our next step is going to be. Cough just not getting better. Thanks for the comment.

The dress is beautiful! Ellen, you did a wonderful job!!

I am so sorry to hear about Madison's foot! I hope it gets better before your trip!

Thanks and I totally agree that Ellen did an awesome job. Foot should be better by this weekend, hopefully. Thanks.

 

[planningcrazymom]

Hi Tinytreasures, I bet your daughter was glad to get the casts off. that had to be very uncomfortable. How long did she have to wear them?

 

[Mom2mitokids]

Ellen...what a beautiful dress. The pillow case is soo cute too. Madison is such a cutie pie.

 

[syammt]

Ellen...what a beautiful dress. The pillow case is soo cute too. Madison is such a cutie pie.

Thank you so much. Going to get some pink or purple sheets to go with the pillow case. Should look great together.

 

[syammt]

I am having one of those days. Took Madison to doctors yesterday because she had blood in her bm and it was runny, so they listened to her lungs again and said they didn't hear anything. Ok then where is the stuff coming from that she is coughing up? She said she was going to call Madison's immune doctor to see what the next step should be. She doesn't know what else to do. Very frustrating to hear a doctor say they don't know what to do to help your child. So I called the doctors office today at 3pm to find out what was going on and they are waiting for Madison's immune doctor to call back (she was out today). In the meantime I called Madison's lung doctor and got her in to see her tomorrow. Someone is going to do something to help my baby if it kills me. Will take temp again tonight and see what it is. Last night it was 100.2 (under the arm), so she is still running a fever. She acts like she is fine, which I guess is a blessing. Sometimes I wish she would act sick so maybe they would do something faster. Is that wrong?
Anyway, sorry to go on and on. Hoping to get somewhere with all of this tomorrow.

 

[planningcrazymom]

Maybe you will get some answers tomorrow. Now on a happier note. My task for this trip is to plan it, and I do not have the first clue where to start, The only thing I know for sure is that we are going to Discovery Cove on Wed. the 27th. This is a completely different trip than the other trips. Help!!!!! Not enough days to do everything. Madison's wish coordinator was supposed to bring her a package sometime this week but her father is in the hospital . so maybe she will make it next week. Prayers go out to her father.

 

[jenb1023]

Sorry to hear Madison's still feeling poorly and am mad that you are not getting answers! Keep pushing and don't take I don't no or no for an answer!

Grandma - from what I have read Wish trips are hard to plan because you are trying to fit in time at WDW, US/IOA, SW and time at GKTW in a short amount of time. Most people pick their top choices for each place and anything else they fit in is a bonus. Good luck - I don't envy your position of trying to get this all planned.

 

[TyRy]

What a great dress - she looks fantastic in it.

I'm really praying the docs can do something about her cough and fever that just don't want to go away.

 

[syammt]

Sorry to hear Madison's still feeling poorly and am mad that you are not getting answers! Keep pushing and don't take I don't no or no for an answer!

Grandma - from what I have read Wish trips are hard to plan because you are trying to fit in time at WDW, US/IOA, SW and time at GKTW in a short amount of time. Most people pick their top choices for each place and anything else they fit in is a bonus. Good luck - I don't envy your position of trying to get this all planned.

Thanks and I won't give up. I am not one to take no for an answer when it comes to her health.

What a great dress - she looks fantastic in it.

I'm really praying the docs can do something about her cough and fever that just don't want to go away.

Thanks - she loves it. Thanks for the prayers also.

 

[planningcrazymom]

Sorry to hear Madison's still feeling poorly and am mad that you are not getting answers! Keep pushing and don't take I don't no or no for an answer!

Grandma - from what I have read Wish trips are hard to plan because you are trying to fit in time at WDW, US/IOA, SW and time at GKTW in a short amount of time. Most people pick their top choices for each place and anything else they fit in is a bonus. Good luck - I don't envy your position of trying to get this all planned.

I am not worried about WDW so much we were just there in April and in 2007 so I can get arround those. But the other parks well, I get on their sites and I am lost.I think the thing is, I don't have control of this trip and that bugs me. I really not a control freak, really, but with disney I plan the whole thing whenever we go. I just need to let go and go with the flow on this one. hahaha

 

[syammt]

Well we were back at the hospital today for more appointments and have to head back there again tomorrow and Friday for more. At least today I left feeling like someone is trying to do something. Madison has a CT Scan tomorrow with contrast (which she hates) of her lungs. Her breathing test today went better than before. Which only means her asthma is not causing the cough. They gave us more things to do here at home to try and help and depending on the CT Scan results we may go on a steriod to help. Just trying to make it day to day. She is "feeling" great. No complaints from her at all.

Mommy on the other hand is just doing. Can't sleep because of dreams about her not making it. Doctors say I need to talk about it, but all that does it make it more real and hurt more. Not sure that is the way to go. Will continue to just keep doing and praying that this cough goes away and doesn't end up in pnuemonia. Better days ahead and an awesome trip to look forward to. Can't wait for GKTW.

 

[TaylorsLoveDisney]

Following Along, Madison sounds like a wonderful little girl.. Praying for you and your family.. happy to see that she got a Wish!!! ive heard Wonderful things about GKTW..

 

[billwendy]

Hi - praying for you guys!!!

one thing bout planning your wish trip is that we really didnt have to wait in lines at all! It really helped us move through parks much more quickly!! It was so fun!!! Make sure Madison wears that button!!!! For us it was so nice that Daniel didnt have to wait in lines, even though he was in a wheel chair, he really wore out in the Florida heat. Being able to skip lines really made the trip more enjoyable for him ( and us too!!). Have fun planning ( or not planning!! lol)

 

[planningcrazymom]

Hi - praying for you guys!!!

one thing bout planning your wish trip is that we really didnt have to wait in lines at all! It really helped us move through parks much more quickly!! It was so fun!!! Make sure Madison wears that button!!!! For us it was so nice that Daniel didnt have to wait in lines, even though he was in a wheel chair, he really wore out in the Florida heat. Being able to skip lines really made the trip more enjoyable for him ( and us too!!). Have fun planning ( or not planning!! lol)

Thanks we can use all the prayers we can get. I agree with you about not waiting in lines. We participated in the " Give A Day Get A Day" in April and we did not have to wait in lines then. It was great. Madison will for sure wear her button. The heat in Florida makes Madison really tired also. We used a wheel chair for her and it was a blessing. The planning is coming along slowly.

 

[planningcrazymom]

Following Along, Madison sounds like a wonderful little girl.. Praying for you and your family.. happy to see that she got a Wish!!! ive heard Wonderful things about GKTW..

Thank you for joining. She is quite the little person. Very independent,and quite sassy. But I would not have her any other way. We can not wait to experience GKTW and everything else that goes along with her wish trip. like having ice cream for breakfast,yummy. And thank you for the prayers.

 

[billwendy]

Thanks we can use all the prayers we can get. I agree with you about not waiting in lines. We participated in the " Give A Day Get A Day" in April and we did not have to wait in lines then. It was great. Madison will for sure wear her button. The heat in Florida makes Madison really tired also. We used a wheel chair for her and it was a blessing. The planning is coming along slowly.

Good idea - you dont want her to be so tired that she cant enjoy everything!! Also, there are rest stations in MK and EPCOT - we didnt get to see them, but I heard they are great for a rest!!!

 

[jenb1023]

I am not worried about WDW so much we were just there in April and in 2007 so I can get arround those. But the other parks well, I get on their sites and I am lost.I think the thing is, I don't have control of this trip and that bugs me. I really not a control freak, really, but with disney I plan the whole thing whenever we go. I just need to let go and go with the flow on this one. hahaha

We just went to US/IOA in May for a few days and my dd and your gd are similar in age so if you have any questions fire away and I will try to help.

 

[syammt]

Just got a call from ped doctor and c-diff test came back negative. That is good, except we have to get 2 more samples from 2 different days to make sure. Headed to Children's for CT Scan of lungs. Supposed to get results today from that, but I am not holding my breath for that one. We go back to hospital tomorrow for 2 more appointments. I am getting so exhausted and need a break from all of this. Soon we will be in GKTW.

 

[TaylorsLoveDisney]

Thank you for joining. She is quite the little person. Very independent,and quite sassy. But I would not have her any other way. We can not wait to experience GKTW and everything else that goes along with her wish trip. like having ice cream for breakfast,yummy. And thank you for the prayers.

yea.. ive heard that too!! 24 hour ice creammm!!! THATS SO AWESOME!! i know all the kids must flip about that!! mine would for sure!

 

[syammt]

Following Along, Madison sounds like a wonderful little girl.. Praying for you and your family.. happy to see that she got a Wish!!! ive heard Wonderful things about GKTW..

Thanks for joining in. Madison is a great kid. Thanks for the prayers. We are so excited about her trip. I think I am looking forward to just getting away the most. Will have loads of pics when we get home.