On September 2nd, 2010 our four-year-old daughter, Sophie, was diagnosed with juvenile dermatomyositis (JDM), an auto-immune disease that attacks her muscles and skin. I have decided to write about it. Here is why:
1. It is a practical way to update concerned friends and family on Sophie's health and treatment.
2. It is therapeutic.
3. It is not secret or shameful to have a disease.
4. Although it is rare, we are not the only family to have a child diagnosed with JDM and there is a chance that we can provide information, solace or "connection" for others by sharing our story.
5. I have found that when you share your thoughts, feelings, fears and dreams, AMAZING things unfold--and you discover that you are not alone.
You are four!!!
Make a wish.
Tuesday, November 16, 2010
Bear Country
Just returned from Bear Country last night (a.k.a. Cubbie County, Blackhawk Belt etc). You Chicago sports-fans know what I am talking about. Chi-town, the Windy City....call it what you like, I am becoming more and more of a fan of that beautiful city by the lake. For one, when I am there it feels as if I am no longer behind enemy lines. You see, raising a Chicago sports-fan in NYC is no easy task. Throughout his childhood, poor Zachary has been steered away from Yankees caps, shuttled past Rangers t-shirts, rushed by Jets pencil cases and veered away from countless other items of NY Sports paraphernalia. Our family is relegated to online shopping for our sportswear needs, whether it be at chicagosport.com or wrigleyvillesports.com. Luckily, I am rather adept at online shopping, but it sure is nice to walk into a store in Chicago and find our favorite teams represented on the racks. Somehow, you do not feel as alone. As in, 'Hey! There are OTHER people who like the Cubs?! Guess what Zach? We are not alone!'
But aside from the comraderie that Chicago provides, this week I am happy for the good news that it has provided. Sophie and I flew to town on Sunday afternoon so that she could visit her Dr on Monday morning. The Dr has reported that she is very pleased with Sophie's positive response to treatment thus far and seemed quite optimistic about her prognosis. She took a blood sample and explained that if Sophie's numbers continue to look good (especially after her recent reduction in prednisone), she would feel comfortable taking Sophie down to 17 mg of oral pred and then slowly decreasing the dose 1 mg at a time. Hallelujah! Two airline flights within 24-hours in the company of a 4 and 1/2 year old on steroids is not an easy feat, but I would travel just about anywhere to get that kind of good news. The fact that we were in Chicago, surrounded by "our people" (grandma and grandpa included), makes it that much sweeter.
But aside from the comraderie that Chicago provides, this week I am happy for the good news that it has provided. Sophie and I flew to town on Sunday afternoon so that she could visit her Dr on Monday morning. The Dr has reported that she is very pleased with Sophie's positive response to treatment thus far and seemed quite optimistic about her prognosis. She took a blood sample and explained that if Sophie's numbers continue to look good (especially after her recent reduction in prednisone), she would feel comfortable taking Sophie down to 17 mg of oral pred and then slowly decreasing the dose 1 mg at a time. Hallelujah! Two airline flights within 24-hours in the company of a 4 and 1/2 year old on steroids is not an easy feat, but I would travel just about anywhere to get that kind of good news. The fact that we were in Chicago, surrounded by "our people" (grandma and grandpa included), makes it that much sweeter.
Friday, November 5, 2010
Top Ten List
Top Ten Signs Your Child is Suffering from the Side Effects of Oral Prednisone
10. She goes to bed at night planning breakfast
9. At breakfast, she plans lunch
8. At lunch, she plans dinner
7. She breaks into impromptu songs about H & H bagels and how she likes to eat them with cream cheese
6. She can often be found sitting in her window gazing longingly at the Chirping Chicken
5. When you wipe her face to get the chocolate ice cream off she exclaims, "Hey, I was gonna eat that!"
4. You are on a first-name basis with the pizza delivery guy
3. Its not unusual to awake at 3:00 am to find every light on in the house and see her wandering about
2. Upon departure of any trip you happen to take, even just down the street to the market, "Are we there yet?" is heard and then repeated with escalating volume and intensity in two minute intervals until the mission is either completed or aborted out of complete frustration
And the #1 sign that your child is Suffering from the Side Effects of Oral Prednisone?
...You are awoken from deep slumber in the middle of the night by the doorbell to find your four-year-old in the company of the night watchman who informs you that he found her wandering the lobby in her nightgown!
As you can plainly see, the side effects of Sophie's medication have been intensely challenging. As a result, we are thrilled with this week's blood test results. Her muscle enzymes continue to look good and the Dr has given us the go-ahead to reduce her from 22.5 mg of prednisone to 18.5 mg. We are very relieved to be moving her medication in this direction. The Dr also mentioned that Sophie's glucose was a bit elevated. He thought it might be due to the prednisone or stress, but I am quite certain that it is more likely due to the econo-size box of candy dots she inhaled before the blood was drawn. Chalk it up to another prednisone success story!
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