I wanted to get a few pictures of Trip's skin symptoms before he began treatment so we could look back and see how he's improved. The picture above was taken September 20, 2009. This peculiar nose rash had been appearing at random all last summer, but it was when it appeared after a drizzly, overcast day spent at Silver Dollar City that I realized that something more serious could be going on- that this wasn't an allergy. I wanted him to be seen by a dermatologist but knew that it took a long time to get into the pediatric dermatologist. I knew that by the time he was seen, the rash may or may not be active. I sent this picture along with a couple of others to a friend of ours from Crosswalk, Cooper Keane, who was a dermatology resident at the time. Cooper forwarded the pics onto the pediatric derm, Jay Kincannon. We still couldn't get an appt. with him until December but once in his office, he immediately remembered the pictures of Trip and that we were friends with Cooper which helped get the ball rolling. It always helps to have a foot in the door! And what a great example of God's hand at work in this process! How
convenient that at a church of 200 members we had a dermatology resident who had direct connections with the 1 pediatric dermatologist in town.
It actually worked out pretty well that he couldn't get an appt. until December because these wart-like growths on the joints of his fingers and toes appeared in October-November 2009. In June 2010, the bumps spread to the under side of his fingers as well. With the nose rash alone, they would have no clue at all what they were dealing with. The development of these bumps (which we now know are Gottron's papules, pretty much exclusive to JDM) greatly narrowed down the possibilities and prompted him to go on and refer Trip to a rheumatologist.
I know, this is the worst picture ever, but it shows his facial rash and swollen, red eyes. This was taken in Chicago, July 28th. The good news is that none of these skin problems bother Trip. They don't itch or, at his age, cause him any embarrassment. The bad news is, the skin portion of the disease is the more difficult to treat and the last to respond to meds. I pray they resolve before he's old enough to be self-conscious about them!
After Trip's muscle biopsy and port placement on Monday we went back to the hotel to rest for the day, but Trip didn't sleep a wink! He finally went to sleep around 10 that night. I've been under anesthesia twice and both times I think I slept for 2 days straight! I guess that's just the nature of a 3 year old boy.
Ruby playing with Annie and Annie's dog, Pepper.
Ruby accidentally kicked Trip's leg incision once which put him in agony, so we figured they probably shouldn't sleep in the same bed. Trip slept on the pull-out sofa and we made Ruby a "cave" in the other sofa next to him.
