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Old 09-05-2010, 06:50 PM   #1
syammt
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Madison's Special Wish Foundation Trip/GKTW

OK so I am going to give this Pre-trip report thing a shot. Grandma (planningcrazymom) is on the boards a lot more than myself, but we wanted to share our planning and our trip with all that have helped us so far.

Our family.
Me - I am a work at home mom
Paula - grandma
Madison - My 7 year old angel and wish kid

I guess what I need to do next is tell about my baby girl, Madison. She is a very bright and active 7 year old. It all started when she was about 6-7 weeks old and I went to give her a bottle. I noticed that she had blood in her mouth from an open sore. They admitted her and ran loads of test. They didn't find anything at that time, but that actually was the beginning. When she was 10 months old she had to have a VP Shunt put in for water on the brain. They caught it early enough that she did not suffer from any side effects. As a toddler we were always fighting sore, rashes and bacterial infection on her skin. Everytime she got a throwing up virus we were admitted so they could run test to make sure her shunt was working correctly. Never (knock on wood) have had to have any revisions to her shunt. When she was 2 she started breaking bones. She has had a broken bone for every year of her life. When she was 4 her asthma started. While dealing with all the skin problems she would have to be admitted at least twice a year for viruses and they would always check her blood for staff and it always comes back positive. They tested her for allergies when she was 4 and she had a few things she reacted to, but nothing major. Which could not explain why her IGE levels where in the 10,000 and they should only be about 150. Finally got her to the correct doctors and they tested her for Job's Syndrome. It came back positive. Basically if you have Job's Sydrome you have no immune system or at best a very compromised immune system. We have had to start home schooling due to all the hospitalization and the treatments. She has one infusion (for her immune system) we do every month and another (for her low bone density) that we do every 4 months. Her official diagnoses are Job's Syndrome, Asthma, Osteoporosis, Oseteopenia, allergies and sores and bumps on her skin so bad the bleed and seep.

We got a call from the Special Wish Foundation due to the awesome public school she started first grade at last year before we started home schooling. Our dates are Oct 26 thru Nov 1 and are so excited about staying at GKTW.

We go Sept 14th to a local country club for her dinner where she will find out all the details about her trip.

Thank you in advance to all who read and follow our pre-trip. I will do my best to keep it up to date.
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Madison's Wish Trip report
http://www.disboards.com/showthread....3#post38105503
www.caringbridge.org/visit/madisonsuttle
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Old 09-05-2010, 08:02 PM   #2
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Pics of our princess


With Mickey on her birthday this year.


Somewhere in Disney


On the beach at the Poly


Grandma and Madison


Mommy and Madison


Madison in Aug in hospital
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Madison's Wish Trip report
http://www.disboards.com/showthread....3#post38105503
www.caringbridge.org/visit/madisonsuttle

Last edited by syammt; 09-06-2010 at 10:40 AM.
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Old 09-05-2010, 08:07 PM   #3
Glo's wish
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Hi Tammy, I'm subbing!! Cant wait to read more!
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Old 09-05-2010, 08:19 PM   #4
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Welcome! You are going at the perfect time when it is not too crowded! I can't wait to hear about your planning and how excited Madison is to go to Disney!
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Old 09-05-2010, 09:30 PM   #5
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I am Madison's grandma, so I am along for the most amazing ride of a lifetime.We are sooo excited for this trip. A new experience for us. We have been to disney 2 times, so this time we are going to do a few new things, like Sea World.GKTW sounds to good to be true.We can not wait. I just hope the bouts of pnuemonia that put her in the hospital don't start early.
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Old 09-05-2010, 10:22 PM   #6
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Hi Guys!!

You will LOVE GKTW!!! It is as good as everyone says. We went on a MAW trip with my 12 yo nephew who had medullablastoma in April - it was GREAT!!!! Do you know any details of your trip yet?

Wendy
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Old 09-06-2010, 06:18 AM   #7
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I'm so excited to read about your planning and trip.
The time will fly by before you leave!!.
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Old 09-06-2010, 09:47 AM   #8
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Good morning guys.Tammy will be here soon but first I wanted to say thank you for joining us on this wonderful journey. We are looking forward to experiencing GKTW resort. And spending some time away from doctors and hospitals.Just chill and relax.
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Old 09-06-2010, 10:20 AM   #9
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Quote:
Originally Posted by Glo's wish View Post
Hi Tammy, I'm subbing!! Cant wait to read more!
I am new to all of this and am very thankful to you for wanting to follow my little angels trip. I will do my best to keep everyone up to date on our planning.
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Madison's Wish Trip report
http://www.disboards.com/showthread....3#post38105503
www.caringbridge.org/visit/madisonsuttle
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Old 09-06-2010, 10:32 AM   #10
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Quote:
Originally Posted by kdzbear View Post
Welcome! You are going at the perfect time when it is not too crowded! I can't wait to hear about your planning and how excited Madison is to go to Disney!
Thank you so much for subbing to our trip. I will have more details on our trip Sept 14th.

Quote:
Originally Posted by billwendy View Post
Hi Guys!!

You will LOVE GKTW!!! It is as good as everyone says. We went on a MAW trip with my 12 yo nephew who had medullablastoma in April - it was GREAT!!!! Do you know any details of your trip yet?

Wendy
We don't all the exact details yet, but will know on Sept. 14th. We are going to a local country club for a special dinner and will get all our details then. We are so excited about getting to go to GKTW. Thank you for your interest it is more than appreciated.


Quote:
Originally Posted by Haybuggsmom View Post
I'm so excited to read about your planning and trip.
The time will fly by before you leave!!.
I hope so. We could really use a break from all the doctors appointments and everyday struggles. Thank you for reading about my baby girl.

Quote:
Originally Posted by planningcrazymom View Post
Good morning guys.Tammy will be here soon but first I wanted to say thank you for joining us on this wonderful journey. We are looking forward to experiencing GKTW resort. And spending some time away from doctors and hospitals.Just chill and relax.
Love you mom. I couldn't do this without you and am so thankful that you are a live in grandma. When it is the three of us I know we can do anything.
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Madison's Wish Trip report
http://www.disboards.com/showthread....3#post38105503
www.caringbridge.org/visit/madisonsuttle

Last edited by syammt; 09-06-2010 at 10:42 AM.
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Old 09-06-2010, 11:10 AM   #11
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I love you too baby girl, and we are a team. I want to thank everyone for reading.
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Old 09-06-2010, 11:28 AM   #12
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sorry mom
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Last edited by planningcrazymom; 09-06-2010 at 11:31 AM. Reason: posted under moms user name by mistake
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Old 09-06-2010, 11:32 AM   #13
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Ok so here is how it all started for Madison. In Feb of this year her doctors pulled me into a conference room and told me that her Job's Syndrome had reached the life threatening stage. They do there best to prepare you for when it actually happens, but it still hurts and takes your breath away. We finally got discharged from the hospital for that stay and Madison wanted to stop by her old school. We stopped and I was telling them what we had just found out and come to find out one of the teachers that had come to know Madison volunteers at A Special Wish Foundation Inc and wanted to know if it was ok to give them Madisons name. I told her sure not really thinking (actually praying) that she would get approved. The approval just made it more real. Within 2 days our wish lady (as Madison calls her), Lisa, called and wanted to know when she could come meet with us. She asked some questions about what Madison was into and what she liked and she came about a week later with loads of gifts for her. We did all the paperwork and made our list of wishes that Madison may want. So in July we finally got the call that we would be going to GKTW. Lisa wanted to know when we wanted to go and we picked the end of October. Hoping the weather would not be as hot for Madison at that time of year. So grandma got started on the dis boards trying to find out as much as she could about GKTW. She has found out loads of info, which has made our planning a little easier. Well, what planning we can do. We did find out week before last that Madison gets to go to Discovery Cove and swim with the dolphins. She is going to be so excited when she finds out. She will find out all the details when we go to her special dinner on Sept. 14th. All she knows for sure is that we are flying and that we are staying at GKTW. I will be sure to take pictures of her at her dinner and will post them for everyone to see. I will add more post as we know more details. Thank you for reading and following our report.
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Madison's Wish Trip report
http://www.disboards.com/showthread....3#post38105503
www.caringbridge.org/visit/madisonsuttle
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Old 09-06-2010, 10:25 PM   #14
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Was just checking our appointment book for this weeks appointments and unless something unexpected comes up we only have appointments on Wednesday. Madison recently had to start "talking therapy" due to some bad dreams and questions she is having about her (what she calls) lung disease. She wants to know why she has to die young just because she has a lung disease. What do you tell your 7 year old when they ask that? No one has said anything to her about dying, but I am told that kids pick up on everything and hear things even when you think they aren't around. Being very careful not to talk about anything bad around her. So anyway we have talking therapy and then an infusion. It's going to be a long day at the hospital.
Hoping to hear from the NIH social worker to get our final trip information about our trip there. We are going there Oct 18 thru either that Wednesday or Thursday to see the Job's Syndrome specialist. Will know more when the social worker calls. I hate waiting.
Hope everyone had a good holiday weekend and thanks again for following our journey.
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Madison's Wish Trip report
http://www.disboards.com/showthread....3#post38105503
www.caringbridge.org/visit/madisonsuttle
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Old 09-07-2010, 11:52 AM   #15
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Got a call this morning from the NIH (National Institute of Health) for income verification. Now waiting on social worker to call. I thought that's who would call next, but I guess there is a change of people who have to call before I actually get to talk to the social worker. She should be next, though. In the mean time Madison has developed a "productive" cough. Hoping and praying it doesn't go into pnuemonia. We have already had one episode of walking pnuemonia this summer. I hope it is not starting this early this year. Last winter was a hospital stay for a week every month from Oct thru Feb with pnuemonia each time. Please God keep the pnuemonia away.
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http://www.disboards.com/showthread....3#post38105503
www.caringbridge.org/visit/madisonsuttle
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