Madison's Special Wish Foundation Trip/GKTW

[WDWCP96]

Just joining you and your mom and beautiful daughter on your WISH trip.

Your daughter is truly amazing and absolutely beautiful! I loved the picture of her modeling the dress she received from the Big Give-so cute!

I can't wait to read more details about your trip and I pray that Madison will be healthy (i.e. no broken bones etc) for this trip!

 

[syammt]

Just joining you and your mom and beautiful daughter on your WISH trip.

Your daughter is truly amazing and absolutely beautiful! I loved the picture of her modeling the dress she received from the Big Give-so cute!

I can't wait to read more details about your trip and I pray that Madison will be healthy (i.e. no broken bones etc) for this trip!

Thank you so much for joining in. She loved her dress from the Big Give. We should be finding out some more this week when our wish coordinator comes over with a package for us. She is mostly looking forward to flying right now and then I think next would be the swimming with the dolphins. I will take loads of pictures and will post them as soon as we get back. We (well I am) are counting down the days. We are praying for some healthiness (if that is even a word) to come her way.
Grandma and I have had such a wonderful experience so far just planning and sharing our trip. It is totally amazing to us how people who only know Madison from reading her story are so giving and caring. It touches our hearts everytime someone post a comment about our baby girl. Thank you again for sharing in our experience and for following along.

 

[syammt]

So I got the call this morning for our (me and Madison) flight times to NIH, FINALLY. We leave Oct 18th at 11:30am and come home Oct 21st at 5:35pm. Which is a day longer than we had first been told we would be there. Grandma is not going to be happy at all because she will be here without us. She has to work and can't go. So the lady I talked to this morning wasn't very helpful about much more than giving us our flight times. I asked her what we do once we get there as far as getting from airport to NIH and she said she thinks there is a shuttle. I am going to wait under this afternoon and call back and see if I can get someone else on the phone who may be able to help me a little more.
So once we get there we will be admitted to the hospital and they are going to do a lot of testing - MRI's, CT Scans, x-rays and bone densitys. She will also see the Job's Syndrome specialist and the dentist. All of the doctors that she will see are all specialist in Job's Syndrome, so we are praying we get some more help. Will keep everyone posted on how things go.

 

[billwendy]

Yeah for an extra day, but Boo - Grandma cant go now?????

 

[planningcrazymom]

Yeah for an extra day, but Boo - Grandma cant go now?????

Yeah, I am upset that I do not get to go with them to the NIH, but I do not have the time to take off with taking off for the wish trip. I just feel like I am letting Tammy down. Hoping she gets some answers to some of her questions. We are waiting for Lisa from The Special Wish Foundation to come to our house to give us some more details about our trip thos week.

 

[WDWCP96]

I really hope your trip to NIH gets you the answers you are looking for. Sorry that Grandma can't come with you but it is definitely more important for her to come on the WISH trip. Can't wait to hear more of the details of your wish trip!

 

[J'sMum]

Just from reading your PTR, Grandma will be there in heart even though she can't take the extra time off. I agree with the post above! It's Important to be there for the Wishtrip !!! Hope you hear more from them soon !

 

[J'sMum]

Yesterday I got a pm about Madison being involved in the Big Give. We were thankfully suprised. Grandma even cried. This is something that we are going to try to get involved with when we get back from our MAW trip. Thank you BG people for including my princess in this wonderful program you have started.

YAY!!!!!!!!!!!!!!!!!!! That is so special and amazing and I am still in shock about everything they have done for our family. Katelynn won;t quit wearing her t-shirts already ! James has had a blast with everything We also plan on Joining in on the Big Give when we get back. My daughter and I have already started picking lil things up as we see them. So far it's just small items like disney socks etc. even if we can only do one every couple of months it would be sooooo MUCH fun to pass this Joy they have given us forward


I have been saying prayers for you, and your family

 

[billwendy]

Paula - I am so glad you get to go on the trip though!!!!!!

 

[syammt]

Ok so this has nothing to do with Madison's wish trip, but very upsetting to Madison. Her goldfish, Bubbles, past away last night. We flushed him back to the fishy ocean were he comes back to life like Nemo. I thought she was ok, but she woke up this morning crying because she missed him. She is so dramatic sometimes. So we are headed to get another goldfish this morning. She has 4 other pets (a guinea pig, bird and 2 cats), but has to have another fish.

 

[syammt]

I really hope your trip to NIH gets you the answers you are looking for. Sorry that Grandma can't come with you but it is definitely more important for her to come on the WISH trip. Can't wait to hear more of the details of your wish trip!

Not sure that I will get the answer I am looking for since I am looking for a "we can fix her" answer, but maybe they will know of something else we can try to keep her from getting so sick all the time. Yes it is more important for Grandma to be there for her wish trip. Thanks for following along.

Just from reading your PTR, Grandma will be there in heart even though she can't take the extra time off. I agree with the post above! It's Important to be there for the Wishtrip !!! Hope you hear more from them soon !

Yes Grandma will be there in heart and we will talk to her everyday and evening, so it will be ok, I know for sure. I would rather her be there for the wish trip than sitting at the hospital with us. They aren't doing anything invasive while we are there. Just taking x-rays and CT scans and probably blood work, so it all will be fine.

Yeah, I am upset that I do not get to go with them to the NIH, but I do not have the time to take off with taking off for the wish trip. I just feel like I am letting Tammy down. Hoping she gets some answers to some of her questions. We are waiting for Lisa from The Special Wish Foundation to come to our house to give us some more details about our trip thos week.

Mom it will all be ok. You are not letting me down in any way. I am not nervous about the NIH at all. I am actually hopefully that they will be able to help with something new to keep her from getting so sick. I am more nervous about flying (as you know) than anything else, but that will be ok also. It is only an hour flight. Up and down right away, no time for to much turbulance. I love you and am so glad that you are with us. I could not be doing all of this without you.

 

[syammt]

Guess what came in the mail today? No it wasn't another Big Give present, yet but I got your attention. Had to lighten this up a bit because I am so tired of getting bad news. Anyway, got a letter telling me the results of Madison's latest bone density test and she has a broke vertibrae somewhere in her back. Can't understand the whole letter, but I for sure understood that part. She isn't in any pain, thank God. But really another broken bone. That is 4 just this year and 3 in the past month or so. Her foot is all better and she hasn't complained about her bum hurting since this weekend, so I think that is doing ok. Nothing really they can do for it, but am going to call ortho doctor tomorrow to see how soon he wants to see her.

 

[syammt]

First I want to wish my mom (grandma) a happy birthday. I know she will read this later.
Now a little update on the wish trip. We got our packet of info from GKTW yesterday. We also got a packet of info from Sea World that we had called and requested. So we are getting more excited. It is getting so close. My nerves are little all over the place with our trip to the NIH before GKTW.
We have had a pretty good week this week. No more broken bones and we only had one appointment this week, so I got a break from all the doctors appointments. The next couple of weeks before we leave for NIH are packed with appointments. Maybe we will do something extra fun this weekend like go to the local pumpkin patch. Hope everyone has a great weekend.

 

[smileycrissy]

First I want to wish my mom (grandma) a happy birthday. I know she will read this later.
Now a little update on the wish trip. We got our packet of info from GKTW yesterday. We also got a packet of info from Sea World that we had called and requested. So we are getting more excited. It is getting so close. My nerves are little all over the place with our trip to the NIH before GKTW.
We have had a pretty good week this week. No more broken bones and we only had one appointment this week, so I got a break from all the doctors appointments. The next couple of weeks before we leave for NIH are packed with appointments. Maybe we will do something extra fun this weekend like go to the local pumpkin patch. Hope everyone has a great weekend.

Aww, Happy Belated Birthday Paula!!


I'm glad to hear you guys had a very much deserved quiet & great week. I hope you have fun pumpkin picking. Whenever I go pumpkin picking it makes me feel like a kid again.

 

[syammt]

Aww, Happy Belated Birthday Paula!!


I'm glad to hear you guys had a very much deserved quiet & great week. I hope you have fun pumpkin picking. Whenever I go pumpkin picking it makes me feel like a kid again.

Mom says thank you so much for the birthday wishes.

We did have a very nice week without to many appointments. Didn't make it to the pumpkin patch. Toooooo cold and rainy and with her still having that stupid cough I didn't want to take the chance of her getting sick before we leave. We just kind of hung out at home and cleaned her room. Hope you had a good weekend.

 

[syammt]

Not a whole lot to report. We are just waiting for our trip time to come and gearing up for the next couple of weeks of appointments, then off to NIH and then GKTW. Should have some new pics this week of something that is coming in the mail. Will get those on as soon as the package comes. Wish coordinator is SUPPOSED to come this Thursday for grandma and myself to sign some form and then she said she would come back the week before we leave to bring us a package.
It's going to get exciting and very busy real soon so I want to take a minute to thank all of you who are following us on our wonderful journey. It wouldn't be what it is without all of you. Thank you from the bottom of my heart for caring and praying for my little angel.

 

[PennyLane1084]

I've been reading your thread from the start and I am so excited for you lovely ladies. Madison is so adorable and I little warrior. That kid has been through so much. Glad to hear the foot is all better. Can't wait to hear more about Madison and the trip!

 

[syammt]

I've been reading your thread from the start and I am so excited for you lovely ladies. Madison is so adorable and I little warrior. That kid has been through so much. Glad to hear the foot is all better. Can't wait to hear more about Madison and the trip!

Thank you so much for following along. We think she is pretty adorable also - most of the time. lol... Actually the foot is not all better. She started limping again the other day so she has to go back in the boot until next Thursday when we see the ortho doc again. Praying it finishes healing before we leave.

 

[syammt]

Ok so this week is not starting good at all. We went to the hospital for Madison's monthly infusion and they had rescheduled it. So we made a trip there for nothing. Then I had to call her ortho doctor because she started limping on her foot again a few days again. She has to go back in the boot until we go see him next Thursday. He will also be looking at her wrist, which has been hurting her for about a week. Not on a regular basis, but when she has pain of any kind he wants to see her because of her high pain tolerance and her history of breaks. So we may be going on our trip with a boot and a cast on her wrist. I guess it could be worse.
On a different note - I made us some bags to use when we go to Sea World for the trick or treating. Grandma's bag is not finished yet. Still waiting on wish coordinator to send me there logo via e-mail for grandma's bag.
Also am going to put a picture of the cake Madison made for grandma's birthday and the dinner I made for her.

Chicken Alfredo for grandma's dinner

Grandma's birthday cake made by Madison

One side of Madison's bag

Other side of Madison's bag and one side of my bag

Other side of my bag and one side of grandma's bag

 

[planningcrazymom]

Okay, can anyone please tell my darling daughter how to make the pictures smaller?