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Old 07-21-2011, 09:07 PM   #1
jdmmom
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jdmmom (Emily) MAW Trip Jan./ Feb. 2012 (?)

So excited to have found this very helpful place! Let me introduce myself and my wonderful family!

The Cast:

My name is Jennifer and my husband Spencer and I have been married for 10 years. Our oldest daughter, Emily, is 6 years old and is our wish child. More on her in a moment. Our youngest daughter is Erin and she is 3 (turning 4 in October). Erin is very much our free spirit. She's full of surprises and absolutely in love with every Disney princess imaginable. So, in a way, this is a wish trip for her, too!

Emily, as I mentioned, is our Wish Child. Four years ago (July '07), we noticed, almost overnight, a mysterious rash that appeared on her knees. We just assumed she must have come into contact with something and was having a reaction. After a week of it not getting better, we took her in to her pediatrician who told us it was Fifth's Disease (and I was pregnant at the time!). So we basically just waited for it to clear up. After a month of it not going away, we returned and he then sent us to a dermatologist. The dermatologist diagnosed her with Eczema. So we began all the creams and fragrance-free soaps. Really, no change was noticed, but we were just "giving it time". We also had just had Erin (Oct. '07) and our world had gotten very busy!
Around February '08 we noticed Emily really struggling to climb steps. She refused to climb her step stool at home to reach things. We thought she was trying to get attention (new baby and all) until it just didn't stop. Before long, she could not sit "criss cross apple sauce" at school, and at home, she was laying in the floor to play and taking 3 hour naps everyday. Walking was become more laboring as well. Not to mention that the rash was getting worse. The dermatologist had suggested seeing an allergist who quickly assumed that allergies were not the cause. He tested her for lupus and some other things I don't remember. The test came back negative for lupus but her liver count was high. He suggested we see our pediatrician to have the liver checked out and then recommended a good pediatric dermatologist in Dallas to go see.
Long story short, when we mad it to the dermatologist in Dallas, she knew at first glance of Emily exactly what she had: Juvenile Dermatomyositis (JDM). She pulled out textbooks and showed us pictures that looked exactly like Emily's skin. Basically, JDM is an autoimmune disease that affects her skin and muscles. Her body attacks her muscles and connective tissue. The skin rash is often the outward sign of disease activity.
We were then referred to Texas Scottish Rite Hospital for Children in Dallas where a whole team of doctors treat and research this rare disease. They quickly put her on weekly IV infusions of steroids and immunoglobulin, weekly injections of methotrexate, and daily doses of prednisone.
While there is no cure for this disease, symptoms can often be effectively treated. After a year and a half, she was off all IV infusion and we were tapering her prednisone when she had a flare-up. JDM can flare up with exposure to UV light from the sun. Emily has to wear sunscreen all the time. Well, somehow she managed to get a slight sunburn last summer (2010) and it set off a flare-up. We had to start all over again with IV infusions. Luckily, she has responded well and will hopefully be receiving her last round next week!

We found out about a month ago that she had been accepted by Make a Wish. We talked via phone with one of her wish granters yesterday and will be attending a Make a Wish party on Saturday where she will officially make her wish to go to Disney World! We are hoping to go sometime in Jan. or Feb. when it will be cooler and my husband will have the vacation time at work.

We would love any and all suggestions as to what to expect in this process and what we should try to do on her wish trip.

Next up, trying to figure out how to get pictures of my family on here!
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Old 07-23-2011, 07:43 AM   #2
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MAW Party

Emily is so excited! Today we go to a Make A Wish (MAW) party with other other wish families where she will officially make her wish to go to Disney World! She's so funny...everyday there is something added to the "list" of wishes to do at Disney. I'm curious to find out what the wish will actually include!
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Old 07-25-2011, 09:28 PM   #3
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Emily's Wish Trip Tentative Dates

Exciting news...looks like we may be able to make Emily's wish trip as early as December! Just waiting on final dates. The girls are both excited about Disney World "dressed up" for Christmas!
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Old 07-25-2011, 09:41 PM   #4
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Emily's Wish Trip Family Pictures

Here is our wish child, Emily:

IMG]http://i1207.photobucket.com/albums/bb471/jcalavan/181.jpg[/IMG]


Emily's Sister Erin:


Our Family: (Erin, Jennifer(mom), Spencer(dad), Emily
(
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Old 07-29-2011, 06:41 PM   #5
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Welcome to the dis!

and may I say, oh my stars! your daughters have the most beautiful blue eyes!! Fantastic!!

My daughter has leukemia, and as part of her therapy, she has many drugs, methotrexate and presidone like your daughter too....so yuck.

Thanks for sharing!
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Old 07-29-2011, 07:48 PM   #6
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So happy she is getting her wish!!! It will be so much fun for you all!!! GKTW is an AMAZING place! Our family loved it for sure!!! Please feel free to ask questions and share your planning! Its so much FUN!!!!
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Old 07-29-2011, 07:57 PM   #7
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Hi! And Can't wait to heat more about your family! How did the MAW party go?
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Old 07-30-2011, 10:35 AM   #8
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Welcome! You have found an amazing place to learn about your wish trip!
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Old 07-30-2011, 11:21 AM   #9
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Emily finished up her las day of infusions yesterday! We are hoping that she continues to do well and will not need anymore. We would love to be able to celebrate this on her Wish Trip!

The Wish Party we wen to last week was so much fun! The Make A Wish staff and volunteers are just amazing. We were told that we would very likely be able to make it to WDW/GKTW the first or second week of December. I think that would be a great time as we would get to enjoy the Christmas decorations. So now, we are just anxiously awaiting word about the exact dates!

Have any of you been during the Christmas season? We were thinking of doing MVMCP. Would that be one of those must dos?
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Old 07-30-2011, 09:31 PM   #10
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Hi Jennifer! Congrats on Emily getting her wish!! We are anxiously awaiting dates here (my daughter wants to go before her next surgery which is scheduled for Sept. 22nd AND would turn 8 while we are there if we get our first choice of dates).

We were at WDW a few years ago during the first week of December and it was fantastic. We did not do the MVMCP but loved the Osborne Festival of Lights at DHS. It is definitely a DO NOT MISS. We also went to the Candlelight Processional at Epcot. It was a highlight as well.

I didn't think that the parks were as decorated for Christmas as I had imagined. I do remember reading that alot of the resorts are very well decorated during that time.

I know you will have a great time planning your trip! Lots of great information on all of the forums!!
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Old 08-04-2011, 09:54 PM   #11
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Quote:
Originally Posted by katieb4 View Post


Welcome to the dis!

and may I say, oh my stars! your daughters have the most beautiful blue eyes!! Fantastic!!

My daughter has leukemia, and as part of her therapy, she has many drugs, methotrexate and presidone like your daughter too....so yuck.

Thanks for sharing!
Thank you so much! I agree, these drugs are "yuck", but at least they do help overall.
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Old 08-04-2011, 09:56 PM   #12
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Quote:
Originally Posted by billwendy View Post
So happy she is getting her wish!!! It will be so much fun for you all!!! GKTW is an AMAZING place! Our family loved it for sure!!! Please feel free to ask questions and share your planning! Its so much FUN!!!!
Thank you so much! From everything I've read and pictures I've seen, GKTW does indeed look AMAZING! Can't wait to experience it in person!
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Old 08-04-2011, 09:58 PM   #13
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Quote:
Originally Posted by xanphylus View Post
Hi! And Can't wait to heat more about your family! How did the MAW party go?
Thank you! The party was fantastic! They really spoiled us. After talking to the coordinator, she feels that she may be able to get us to Disney the first or second week of December! So excited about that!
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Old 08-04-2011, 09:59 PM   #14
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Quote:
Originally Posted by Loodlow View Post
Welcome! You have found an amazing place to learn about your wish trip!
Thank you! I've learned so much already and can't wait for more as we get going on this thing!
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Old 08-04-2011, 10:00 PM   #15
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Quote:
Originally Posted by angcmom View Post
Hi Jennifer! Congrats on Emily getting her wish!! We are anxiously awaiting dates here (my daughter wants to go before her next surgery which is scheduled for Sept. 22nd AND would turn 8 while we are there if we get our first choice of dates).

We were at WDW a few years ago during the first week of December and it was fantastic. We did not do the MVMCP but loved the Osborne Festival of Lights at DHS. It is definitely a DO NOT MISS. We also went to the Candlelight Processional at Epcot. It was a highlight as well.

I didn't think that the parks were as decorated for Christmas as I had imagined. I do remember reading that alot of the resorts are very well decorated during that time.

I know you will have a great time planning your trip! Lots of great information on all of the forums!!
Thanks for the information! Hope your first choice of dates works out for you guys!
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