Monday, August 9, 2010

Our New Boy

Rex and I have been so amazed by the drastic change that we've seen in Trip after just two weeks of treatment. He is so energetic & often downright hyper! A part of this could be the steroids themsleves, but it appears that he's now the on-the-move 3 year old boy that he was intended to be. Over the past year we've just assumed that Trip's subdued behavior was just his personality, but now it's clear how poorly he must've felt. Frequently over the past 6 or more months Trip would ask us to carry him and say, "I too busy to walk." This past Saturday we spent several hours out running errands and Trip said with excitement, "I'm not too busy anymore! I feel better and I want to walk." He walked, well actually ran, most of the day on Saturday and never once asked to be carried. We've also been keeping a close eye on his neck strength and he can now lift his head up for 2 seconds. Actually, I forgot to mention in the previous post that on Wednesday in Chicago the PT examined Trip and found that he could slightly lift his head after having 1 steroid treatment! Rex and I never expected to see such quick improvement. Praise God!!

The video above is a snippet of the near hour I spent a couple of days ago trying to get Trip to take a nap unsuccessfully. He's clearly energetic! Though he's now not napping as frequently as before, he crashes hard in the evenings and is asleep almost instantly when his head hits the pillow. Thank you all for the many prayers that you've lifted up for our little man. God has heard our plea!

The Not-So-Fun Part of Chicago

Getting a hug from Mommy before surgery.On Monday, July 26th, we had to be at Children's Memorial at 7 a.m. which meant leaving our hotel in Itasca by 5:30 to ensure we were on time, considering the severity of Chicago traffic.
Before the surgery he got a new Rintoo from Ni-Hao Kai-Lan (right) to accompany his pal HoHo (left).
The needle was left in his port so that he could get infusions through it the next day.
The procedures went off with only a small glitch. They had planned to put the port on his left side but, for some reason, couldn't access that vein. He was very overwhelmed by all the beeping equipment and crying babies in the recovery area so they quickly moved him to his own recovery room. He wouldn't speak at all for a couple of hours after surgery aside from the occasional "I wanna go home." So sad.....Just to recap, he was put under with general anesthesia and then had another MRI, muscle biopsy from his left thigh, and then had the port placed in the right side of his upper chest. Anna, Dr. Pachman's nurse, called today to check on Trip. I asked her if the muscle biopsy or MRI reports were completed. (They quickly read the MRI before the muscle biopsy to make sure the thigh, the usual place to take muscle from a JDM patient, would be appropriate but we weren't told much about the findings.) The muscle biopsy has not been completed but she did explain the MRI findings which were significantly different from the previous MRI at ACH not done with the proper technique. The 2nd MRI showed "abnormal signal throughout, primarily in thigh and pelvis. strongest signal in gluteus and"..... some muscle in the back of the thigh which I can't remember at the moment. She's going to fax us a copy of the report so we can have it on hand. Therefore, not that we ever doubted this, we now have a concrete diagnosis of dermatomyositis, instead of a diagnosis based on clinical findings alone.
Trip then got his first infusions through his port on Tuesday, Wednesday & Thursday which take about an hour and a half. He got Solumedrol, the intravenous steroid, all 3 days and on Thursday also got a low dose of methotrexate, a chemo drug. Since it's a low dose he hasn't had any nausea and shouldn't have any hair loss. Trip is such a trooper and has done remarkably well with everything. Thank you God!

Back at the Hotel

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.

The Shedd & Lincoln Park Zoo

Outside the Shedd Aquarium
We now have an annual membership to the Shedd Aquarium! It was one of those situations where the annual membership is only $30 more than the daily rate for a family, and we knew we'd be back to Chicago again within the next year.

They have a glass topped sting ray tank that you can walk on. So cool!
At "Fantasea," a live show with dolphins, whales and penguins.
Getting to pet sea stars.
Playing in the penguin habitat.... why didn't they switch penguin suits?
Sliding down the ice like a penguin.

Playing in the submarine.
I was mesmerized by this tank of jelly fish. It hypnotizes you like a lava lamp.
Exploring the glacier.
There's only 2 pics of the zoo because we didn't last long there. I wasn't feeling well and Trip quickly fell asleep in the stroller. We did get to see some kangaroo which, I think, was a first for the kids and, fortunately, admission to the Lincoln Park Zoo is free so we'll visit it again next time.

Rainforest Cafe & Shopping in Chicago

After Trip's infusion on Tuesday, the boys dropped Ruby and I off at American Girl and we had so much fun browsing all the cool stuff! I can't wait for her to be able to read the books that I read.
We kept the trip to AG basic this time. Ruby picked out a doll and a pet for her doll. Maybe next trip we'll visit the doll hair salon or have brunch in the doll cafe.

Ruby chose a "Just Like Me" doll with medium skin, brown layered hair, and brown eyes and has named her "Annie."
On Thursday evening we took the kids to eat at Rainforest Cafe which they loved! We ate ate at one in Dallas a couple of years ago and Ruby was scared of all the moving animals and loud noises.
They got strobe light flashing souvenir cups and are already asking to go back on our next Chicago trip.
After dinner at Rainforest Cafe we did some more shopping in downtown Chicago which included a visit to The Disney Store. Trip is enjoying his new Toy Story 3 character set.

The Chicago Children's Museum

The Chicago Children's Museum is awesome- especially since we get in free with our Museum of Discovery annual membership!.... The kids enjoyed making brick oven pizzas....

putting out fires......

playing in the water works......

catching butterflies......

going down the piano slide......
digging up dinosaurs......
riding the bus......
putting gas in a car......
changing the tires on a car......
going fishing.....
just to name a few!
We went to the museum on Wednesday morning, 48 hrs. post-op for Trip, and he was just starting to try to walk. His left leg was really sore from the muscle biopsy from his thigh. We knew he was feeling better when he asked to go across the elevated rope bridge with sister. Great job, Trippy.....and Ruby, too!


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!