Madison's Special Wish Foundation Trip/GKTW

[planningcrazymom]

I am so happy Madison will swim with the dolphins (and mom too!). What an amazing wish come true. We will all be excited to see the TR pictures.

Safe travels this week.

We are pretty happy too. this is the highlight of our trip along with our stay at the village. soooo excited. I will do my best at taking pictures [ Tammy is
the picture taker in the family]. Okay I have started packing. For some reason it has been hard for me to get in the mood to pack for this trip. Usually i would have been packed about a month before our trip, but not this time. The Disney resorts have shampoo in the rooms, does GKTW furnish or should we bring our own? Oh and bath soap? Madison has to use unscented soap so we will bring that.

 

[smileycrissy]

We are pretty happy too. this is the highlight of our trip along with our stay at the village. soooo excited. I will do my best at taking pictures [ Tammy is
the picture taker in the family]. Okay I have started packing. For some reason it has been hard for me to get in the mood to pack for this trip. Usually i would have been packed about a month before our trip, but not this time. The Disney resorts have shampoo in the rooms, does GKTW furnish or should we bring our own? Oh and bath soap? Madison has to use unscented soap so we will bring that.

Don't worry, I'm sure you'll soon be excited with the Disney Magic everyone feels when their trip is approaching. I'm sure that once you have completed your trip from NIH, you'll see the magic kick in. I just think you're a little nervous with your NIH trip so it's overwhelming you.

Be careful, travel safely, and we'll all keep you in our thoughts & prayers for the next few days.

 

[syammt]

Madison and I are getting ready to leave for the airport for our trip to NIH. Please keep grandma in prayer as she will be home by herself while we are at NIH and please keep Madison and I in prayer for no bad news and a good flight. I hate flying. I will give updates when we get there. Thanks to everyone in advance for the prayers and for following along. 1 week til GKTW.

 

[PennyLane1084]

Thinking about you ladies. Good at NIH!

 

[wishin' on a star]

We are pretty happy too. this is the highlight of our trip along with our stay at the village. soooo excited. I will do my best at taking pictures [ Tammy is
the picture taker in the family]. Okay I have started packing. For some reason it has been hard for me to get in the mood to pack for this trip. Usually i would have been packed about a month before our trip, but not this time. The Disney resorts have shampoo in the rooms, does GKTW furnish or should we bring our own? Oh and bath soap? Madison has to use unscented soap so we will bring that.

I took pics of what was in the villa when we checked in. I think it's on pg 2 of my TR. Basically, there was Crest toothpaste in both bathrooms, Zest soap, and travel size Pantene shampoo. There's regular Tide powder for the washing machine, but we went out and bought some Free and Clear detergent, as my son has eczema. There was also a tube of Panama Jack sunscreen. Hope this helps! Walmart is right up the street (you'll pass it everyday on your way to the parks!), so don't fret too much about forgetting any of those personal items. You guys are going to have such a great time!!! I hope all goes well at NIH this week. I am pretty close to there if you need anything while are you here in the DC area.

 

[syammt]

We are still sitting at the airport. The plane that was supposed to take us to NIH had mechanical problems so now we aren't leaving until 12:45 which means we have a 3 hours wait once we get there before the shuttle to NIH leaves. It is going to be a long day. OH I can't wait for GKTW.

 

[ellenbenny]

We are still sitting at the airport. The plane that was supposed to take us to NIH had mechanical problems so now we aren't leaving until 12:45 which means we have a 3 hours wait once we get there before the shuttle to NIH leaves. It is going to be a long day. OH I can't wait for GKTW.

Oh nooooo! I hate travel days! I hope the trip goes smoothly.

 

[scouthawkk]

We are still sitting at the airport. The plane that was supposed to take us to NIH had mechanical problems so now we aren't leaving until 12:45 which means we have a 3 hours wait once we get there before the shuttle to NIH leaves. It is going to be a long day. OH I can't wait for GKTW.

That totally sucks! Have you taken off yet (1:09)? BWI has some places to grab food or a snack, so once you get your luggage, maybe the wait wouldn't seem so long...

 

[planningcrazymom]

Okay, I now know who sent Madison the disney gift card and I want to thank them on board. So a great big thank you goes out to LLAXON,[I hope I spelled that right]

 

[rcq925]

Good luck girls!!

So sorry about the delayed flight! Hope the rest of the week goes more smoothly! I will be thinking of all of you! I hope you can send us some updates on how you are doing!

 

[Dreamer & Wisher]

I am hoping your traveling went better after the delay. Are you settled into your accommodations and resting? (a little pixie dust so things go well)

Just wanted to let you know my part of the big give is on it's way to you from Georgia. You will probably get it when you get home.

 

[syammt]

OK we finally made it to the NIH at 7pm yesterday. Oh my gosh what a long day. They have started her tests for today and there are a whole lot more to come today. I will try to get back on again later to pass along another update. She is doing fine except for the fact that she has to share a room. She is used to having her own room at our local hospital. I still haven't seen her doctor and nobody has really told me anything. They just keep coming to take her to more test and say the doctor will be in later. I just have to keep telling myself that what there are doing will hopefully help her and others beat this Job's Syndrome.Thanks for all the prayers and again I will update again later today.

 

[scouthawkk]

OK we finally made it to the NIH at 7pm yesterday. Oh my gosh what a long day. They have started her tests for today and there are a whole lot more to come today. I will try to get back on again later to pass along another update. She is doing fine except for the fact that she has to share a room. She is used to having her own room at our local hospital. I still haven't seen her doctor and nobody has really told me anything. They just keep coming to take her to more test and say the doctor will be in later. I just have to keep telling myself that what there are doing will hopefully help her and others beat this Job's Syndrome.Thanks for all the prayers and again I will update again later today.

WOW, that is a long day! Bummer about the roommate thing. Is it another kid so that at least she has someone to talk to?

Jen

 

[jeniamt]

Just coming out of lurkdom to say Hello! I am so glad Madison likes the Tinkerbell outfit! It was so fun to make and she looks absolutely adorable in it. While at NIH, you are only about 45 minutes from me so if you need anything, please let me know. You are welcome to PM me. I would even be happy to give you a lift back to BWI if I am not at work. BWI is only about twenty minutes from me. Please do not hesitate to ask.

 

[scouthawkk]

Just coming out of lurkdom to say Hello! I am so glad Madison likes the Tinkerbell outfit! It was so fun to make and she looks absolutely adorable in it. While at NIH, you are only about 45 minutes from me so if you need anything, please let me know. You are welcome to PM me. I would even be happy to give you a lift back to BWI if I am not at work. BWI is only about twenty minutes from me. Please do not hesitate to ask.

Funny. When I heard they were going to have a long wait at the airport, I tried to talk DH into meeting them in the baggage claim area holding up a sign that said "Queen Tammy & Princess Madison, your carriage awaits." Unfortunately, he didn't go for it Jen, sending you a PM.

Jen

 

[syammt]

WOW, that is a long day! Bummer about the roommate thing. Is it another kid so that at least she has someone to talk to?

Jen

Yes it is a kid, but they only speak Spanish. Madison is hating her room. They are supposed to be checking on moving us. Will talk to you later. Her last test is around 4 or so and I will call you this evening.

Just coming out of lurkdom to say Hello! I am so glad Madison likes the Tinkerbell outfit! It was so fun to make and she looks absolutely adorable in it. While at NIH, you are only about 45 minutes from me so if you need anything, please let me know. You are welcome to PM me. I would even be happy to give you a lift back to BWI if I am not at work. BWI is only about twenty minutes from me. Please do not hesitate to ask.

Thank you so much for the offer. Our plane leaves at 5:20 so we have to be at the airport at 3:20. They have a shutlte that leaves here at 12:45 that we will take. Thanks again for the outfit. Can't wait to get there so she can wear it.

 

[scouthawkk]

Yes it is a kid, but they only speak Spanish. Madison is hating her room. They are supposed to be checking on moving us. Will talk to you later. Her last test is around 4 or so and I will call you this evening.

That's an even bigger bummer. I hope she can get a new room! Hang in there! I look forward to hearing from you.

 

[syammt]

Wasn't sure if I should share this here or not, but decided to go ahead and do so since I have shared what a hard time I have been having. Hope it is ok.

OK it has been an awlful day the past two days, but Madison is doing good. If you know her at all you know that she is very strong and nothing gets her down - NOTHING. She has all the faith in the world that she is going to be fine. We have had so many test today and so many more to come tomorrow, but if we get nothing else out of our trip here to the NIH I have gotten hope. THANK YOU GOD. Thank you for giving me hope at a time when I just wanted to give up again. We met a 41 year old women who has had Job's Syndrome since she was 3 years old. She is alive (obviously) and doing well. She has the normal Job's problems - pnuemonia and low bone density, but she has lived with it for 38 years. GOD has given me hope that my baby girl will grow up to become a vet like she wants to be and live a full life. It may not be a totally healthly life, but that is ok and we can deal with that. The amazing thing about Maureen is that she lives in Lewis Center like 20 minutes from us. Can you believe it?! All this time and she was right here in our area. She is really a nice lady and we exchanged phone numbers and I believe that we will stay in touch and see each other on a regular basis. Soemone who truly knows what Madison is going through and the important word is GOING through. She has the best doctors anyone can have with Job's Syndrome working to find a cure. Everyday they are finding more things that link them to getting closer to a cure. With being in this study Madison will be one of the first to receive anything as soon as it becomes available. So no matter what else happens while we are here at NIH I have hope and I owe it all to GOD. I know you are using Madison in a special way and I am so fortunate to be her mommy. Thank you for trusting me to be that person. THANK YOU GOD for being you and being in my life even when I don't believe that you are.

 

[syammt]

So sorry I forgot to reply to you. We are as settled as we can be. The past couple of days have been rough, but we only have one more til we get to go home and see grandma and be in our own beds. Can't wait to get what you are sending and if it comes when we get back that will be cool. It will be like it is extending her trip some. Will let you know when we get it.

I am hoping your traveling went better after the delay. Are you settled into your accommodations and resting? (a little pixie dust so things go well)

Just wanted to let you know my part of the big give is on it's way to you from Georgia. You will probably get it when you get home.

 

[rcq925]

Wasn't sure if I should share this here or not, but decided to go ahead and do so since I have shared what a hard time I have been having. Hope it is ok.

OK it has been an awlful day the past two days, but Madison is doing good. If you know her at all you know that she is very strong and nothing gets her down - NOTHING. She has all the faith in the world that she is going to be fine. We have had so many test today and so many more to come tomorrow, but if we get nothing else out of our trip here to the NIH I have gotten hope. THANK YOU GOD. Thank you for giving me hope at a time when I just wanted to give up again. We met a 41 year old women who has had Job's Syndrome since she was 3 years old. She is alive (obviously) and doing well. She has the normal Job's problems - pnuemonia and low bone density, but she has lived with it for 38 years. GOD has given me hope that my baby girl will grow up to become a vet like she wants to be and live a full life. It may not be a totally healthly life, but that is ok and we can deal with that. The amazing thing about Maureen is that she lives in Lewis Center like 20 minutes from us. Can you believe it?! All this time and she was right here in our area. She is really a nice lady and we exchanged phone numbers and I believe that we will stay in touch and see each other on a regular basis. Soemone who truly knows what Madison is going through and the important word is GOING through. She has the best doctors anyone can have with Job's Syndrome working to find a cure. Everyday they are finding more things that link them to getting closer to a cure. With being in this study Madison will be one of the first to receive anything as soon as it becomes available. So no matter what else happens while we are here at NIH I have hope and I owe it all to GOD. I know you are using Madison in a special way and I am so fortunate to be her mommy. Thank you for trusting me to be that person. THANK YOU GOD for being you and being in my life even when I don't believe that you are.

I am so glad that you are so hopeful and found someone else so close to you with Job's Syndrome! That is wonderful and Madison will be able to talk with her and ask her questions!

I know that every time I meet an older person with Cystic Fibrosis that it continues to give me hope that Hayley will have a long life as well!!!

You guys are going to be at Give Kids The World before you know it!!

Good luck with the rest of the tests!!