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!
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!
Can't wait to heat more about your family! How did the MAW party go?
