Thursday, June 24, 2010

Finally, a Diagnosis

Trip patiently waiting for his MRI to look for evidence of muscle inflammation.
After more than a year from Trip's initial onset of symptoms, months of tests and seeing specialists, we were relieved today to finally be given an official diagnosis and plan of action. Though Rex and I had known in our gut for several months that this would eventually be the diagnosis, it was comforting to finally hear our rheumatologist, Dr. Jason Dare, say, "I'm comfortable making the diagnosis of dermatomyositis with no muscle involvement" (this is often called amyopathic dermatomyositis). We're very thankful that, thus far, he has no evidence of muscle involvement, though the skin component of the disease is more difficult to treat.
For now he will begin a daily dose of Plaquenil, an anti-malarial drug, to treat his skin symptoms and prevent them from worsening. Doctors aren't sure why anti-malarial drugs are effective in treating the skin symptoms associated with dermatomyositis and lupus. Plaquenil has less severe side effects than steroids, the other treatment for the disease, so we're going to try this first.
Though complications from the disease can be very difficult or even fatal for some children, Trip's prognosis looks very good. It's good that he's had symptoms for more than a year and we still haven't found any muscle involvement. That tells us that it's progressing slowly and that he may never have any muscle weakness. Here's a good link that gives a full explanation of the disease:
If you look at that website you may wonder what symptoms Trip currently has. Right now he has the associated Gottron's papules, knee and elbow rash, neck rash, facial rash (currently it's severity is controlled with sunscreen), and mild lipoatrophy of the eyes. For photos of those symptoms click here.
Many of you know that I was concerned about Trip's sun exposure and to what degree we should protect him, as JM patients are sun-sensitive. Some patients see a worsening of symptoms from being exposed to the sun. Dr. Dare confirmed today that what we are doing now, diligent sunscreen applications & wearing hats, should be sufficient. We do need to be sure to reapply sunscreen hourly when swimming and try to avoid peek sun hours. So, we will now be sure to go to the pool and Wild River Country in the late afternoon and evening, but a Florida beach vacation isn't completely out of the question! Yea! I feared that we would be completely restricted. We'll just have to adjust the time of day that we spend outdoors.
Still groggy post MRI, but thrilled with his new HoHo (from the Ni-Hao Kai-Lan cartoon) that Rex brought him.
Having fun getting to leave in a wagon.

Our prayers for Trip are this:
1. First and foremost, that the disease will quickly enter a permanent remission. That would be the absolute best outcome!
2. But in the meanwhile, that the Plaquenil will be effective with little side effects so that he doesn't have to begin a steroid treatment....
3. that he will NOT develop any further skin symptoms, particularly calcinosis which can be very onerous....
4. and that he will NOT ever have any muscle involvement.

Rex and I cannot thank you enough for all of the prayers that have already been lifted up and that will continue to be lifted up for our precious boy's sake. We believe that God can completely heal our son and in no time this disease will be just a little misstep or "trip" in this journey of life. I pray that we will never lose sight of how we have already been so very blessed and had numerous prayers answered- that we can glorify Him even through this storm.

"I am the Lord, the God of every person on the earth. Nothing is impossible for me."
Jeremiah 32:27

A Sweet and 2 Funnies

I downloaded the pictures off my phone and found these. How sweet are they all cuddled up together to watch a movie? I love that they LOVE each other. =)
They were pretending that Lilly Belle, our neighbor's cat who often hangs out on our roof, was stuck on the roof of their playhouse.
I walked by the playroom one day and saw this and enquired as to what they were doing. Trip said, "We're on a motorcycle going to J.T. Maxx!" Gotta love that creativity....... my apologies for the nearly naked Trippers. When these were taken a few weeks ago we were in the final stages of potty training so he often hung out in his undies.

Thursday, June 3, 2010

Peabody Park

This week we took our first trip of the summer to the Peabody Park water pad and our neighbor, Gavin, came along.
We'll definitely be keeping this on our rotation of summer activities. Next time, I'll probably have to join them in the sprinklers. It's sooo hot!

Memorial Weekend

......and what a great weekend it was!! Friday night I enjoyed a movie and dinner with girlfriends and when I returned home found this: A perfectly quiet house and a tent in the backyard filled with my snoozing family. I didn't even know we owned a tent! Rex had been telling Trip that once he was potty-trained they could have a campout so he made good on his promise. What a fun Daddy!

Saturday we hit Wild River Country and Sunday evening enjoyed a BBQ across the street at the Brzezinski's. The kids had a blast with the Slip n Slide while the adults feasted and chatted.

After the BBQ we quickly put the kids in dry clothes and went downtown to watch the Riverfest Fireworks. Rex, being a former downtown resident, knew the perfect free uncrowded spot for fireworks viewing atop a parking garage.

Monday we ended our already eventful weekend with yet another trip to Wild River Country. Schweh!


Last Thursday Maumelle Mommy and Me braved the 90 degree heat at Funland in Burns Park. It was so hot and muggy that the instant we got there I was tempted to make up a reason that we couldn't stay. But, the nice mom that I am endured it through about 8 rides. Ugh!
Trip with his new buddy, Tyler.
Tyler's mom, Ruth, joined them on the spinny thing. (Tyler has an older sister, Abigail, that's Ruby's age but somehow she didn't make it into any of the pics.) I love rides but cannot do spins. Thank you, Ruth!
Ruby said that she was too hot to sit properly on the carousel and just needed to spread out. I hear ya, sister! It's gonna be a long summer!

Wild River Country

We've already made several trips to Wild River Country and gotten our money's worth out of our season passes. Rex and I even hope to take a date night there soon so we can enjoy all of the slides and the wave pool together. Ruby is actually very brave and I've had a blast riding several of the slides with her. In fact, I better hurry up with my blogging and get to bed because we have a playdate planned there tomorrow.

Shrek the Final Chapter

While the van got serviced at the Honda dealership next door to The Rave, the kids and I saw the new Shrek movie. The kids of course loved it and I laughed out loud several times.....Thanks for joining us Mayer family!


The big day that Ruby has been anticipating for months finally arrived. Ruby did a fabulous job and the girls looked adorable.

The teachers change them back into their "street" clothes right after the performance. Unbeknownst to me, true performers are never supposed to wear their costumes to or from the theater. =)
"Oh brother!"
Brava! Brava! Way to go Ruby!