On June 19th Ruby went to a little going away party at The Painted Pig for her best preschool bud Avery. Avery's family has moved to Jonesboro so her Dad can begin practicing at a hospital there.
The bright pink cupcake icing was a big hit since it doubled as lipstick.
Best wishes in your new home Avery! Ruby will really miss you!
I'm playing blog catch-up today. A couple of weeks ago we met the Days at the pool that they frequent in North Little Rock.
We all sported matching suits. How cute are they?
I can't believe that it was 5 years ago today when I suddenly leapt out of bed around 8:30 a.m. when my water suddenly broke. Rex says, "Are you sure? Really?"....."uh, yes. I'm sure. Urine didn't suddenly just gush from me in my sleep." It was a Friday and Rex hadn't gone to work yet because I had been having some inconsistent contractions and suspected that it might be the big day. She was due July 5th and my doc was planning to induce the next week if I didn't have her over the weekend. Ruby Sheaffer Reeves graced our world that night around 8:30 p.m. and our world has never been the same..........Above, Ruby is enjoying her birthday morning surprise, a My Little Pony nursery set. She had to arrange them just right for the photo.
I was in love with her from the first second and love how this picture captures my joy!
And look how grown up she's looking now. I took this July 4th at WRC.
On June 25th we had a birthday party for Ruby a couple of weeks early so that we could see Toy Story 3 at The Rave Theatre soon after it's release.
Whoa! That hat makes Ruby look extra tall.
We were joined by the Days (Vivian and Bauer) and several Maumelle neighborhood friends: Abigail & Tyler Simpson, Malia & Grant Bugg, Danny & Drew Mayer, Gavin Brzezinski, & Lilly Crandall.
The Maumelle Kroger Bakery did a great job on the cake!
The 5th candle is hiding behind Jessie- yes 5 candles! I can't believe it! Thank you friends for helping us celebrate! Ruby had a wonderful time!Last Thursday evening, after the official diagnosis had been made, I joined the parent's discussion board on CureJM.com and spent hours just reading about other parent's stories and questions and answers between parents of kids with dermatomyositis (from this point forward I will be abbreviating this to JDM. Schwew! That word is a doozie!). What I consistently saw were parents recommending to other parents that they should take their child to see Dr. Lauren Pachman in Chicago. Some even said things like, "We wish we had seen Dr. Pachman sooner. Her treatment plan quickly changed the course of the disease and our child may not have had to suffer so long had we gone sooner." I shared this with Rex and we both agreed that we should go on and try to get an appt. for Trip in Chicago- not only for Trip's sake but for us as his parents. We could have the peace of mind knowing that he was seeing the expert and would be getting the best possible care.
Because the disease is so rare, there aren't many doctors who have a lot of experience with it. I think our pediatric rheumatologist here at Arkansas Children's Hospital is doing the best he knows how to do with the limited experience that he's had with JDM. I haven't asked how many JDM patients he has yet, but I'm guessing that it couldn't be more than a handful or 2. Dr. Pachman is one of the world's foremost researchers and top experts on this disease. Her practice is dedicated to JDM children and she has seen hundreds of these patients.
So, the next morning (Friday, June 25th) I called Dr. Pachman's office in Chicago to make an appt. for Trip, explaining that he was a newly diagnosed JDM patient. They penciled him in for July 19th while they started the process of getting copies of all of his records from ACH. The following Tuesday morning (June 29th) I got a call from Pachman's nurse just saying that they had received Trip's records (kudos to ACH for that speed!) and needed to ask me a few questions before they confirmed the appt. In my conversation with the nurse I discovered a couple of things that made me a little uneasy about our current plan of treatment with Dr. Dare. First, we chatted about Trip's MRI. I said that it was normal accept for some findings in his buttocks that my dr. didn't think were of any significance. He said that something in the legs would be consistent with JDM. She explained that that was actually what they were looking for on the MRI- a symmetrical abnormality in either the leg or buttocks. Hmm? (I've since then gotten the CD of the MRI and the finding in his butt is on both sides) Then I asked her if I should continue to give Trip the Plaquenil or hold off until we saw Pachman in a few weeks. She said, "just Plaquenil? I've never heard of a patient only being on Plaquenil." Ok. I began to slightly panic. Clearly, our current plan of action wasn't aggressive enough but I didn't want to contact Dare with my concern. I wanted Pachman to be the one to decide how to treat Trip. I decided that all we could do was pray that his condition didn't worsen before the 19th.
Then, 5 minutes later I got another call from Pachman's office in Chicago wanting to know if we could be there next week, July 7th (they're only in clinic on Mons & Weds, completely booked on the 30th, closed for the holiday on the 5th). Dr. Ibarra, the fellow, had just reviewed Trip's case, and thinks he should be seen ASAP. She said that this disease has been brewing in him for quite some time and that he should've been diagnosed months ago. Also, that she wasn't comfortable at all with him only being on Plaquenil. Thanks God! Someone that recognizes a real problem and wants to proactively do something about it!
Meanwhile, I've been reading the book "Myositis and You: A Guide to Juvenile Dermatomyositis for Patients, Parents, and Healthcare Providers" partially written by Dr. Pachman. A sentence in the book jumped out at me last night: "Skin disease in JDM is associated with inflammation of blood vessels and should be treated as aggressively as muscle weakness with both systematic medication and topical agents." From reading this book I've gathered that he'll probably be put on an intravenous corticosteroid and methotrexate as this seems to be the preferred treatment at diagnosis. They may want to put in a port-a-catheter to make administering these drugs easier since he is so young. I'll update after we see Pachman on Wednesday..... as of now, not sure how we're getting there. Round-trip plane ticks to Chicago are now $500+/person. We may be making a quick 2 day haul to and from Chicago via Honda Odyssey. Ugh!
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. 
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.
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.
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!
......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!
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.
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!
Tuesday was the long-awaited and anticipated dance recital dress rehearsal. I was so relieved that they didn't ask us to put gobs of make-up on our 4 year olds. In fact, they didn't have to wear any make-up at all but said a little bit would, of course, just make the event even more special and fun for the girls. I let Ruby wear some blush, lipgloss, and a bit of mascara. She loved it!!
Ruby and buddy Kennedy (above) and Sophie (below).
They worked their magic to "Milkshake Mademoiselle." Can't wait for the big event on Sunday!
