Legoland

While in Chicago we ventured out to Schaumburg, IL to visit Legoland! So cool!

A mini Chicago made completely out of Legos

We saw a 4D Bob the Builder show where he used Legos

There were large "Boy Scout Pine Derby-like" ramps where the kids could build a car out of Legos and race them. A big hit with both!

We saw how Legos were made and then got a little souvenir Lego.

We also went on a pirate themed ride that reminded me of the Peter Pan ride at Disney World. Again- everything was made of Legos.

We also saw some of our fave characters in Legos.....

and also some not so fave characters. Legobama! ;)

Chicago Funsies

On September 10th-14th we were back in Chicago to see Dr. Pachman and for Rex to run the Chicago Half-Marathon with the Cure JM team. While we were there we hit our usual fun spots, first, the Chicago Children's Museum.

Ruby put on quite an entertaining puppet show.

And they chilled on the big comphy couch.

Later that weekend we went to the Shedd again and Trip was thrilled as always to see the penguins. Can't wait for the new penguin exhibit to open here at the LR Zoo!

He loves the submarine too! So glad we went on and bought the membership there.

Three Firsts for Trippy

Now that Trip is feeling better we're seeing him blossom in so many different ways. Last week when I picked the kids up from Bible study I was shocked to learn that Trip, not Ruby, had colored this picture. Now every day he's asking to color and is creating masterpieces like his big sis!
For the longest we thought it was so bazaar that Trip refused to push the pedals on a tricycle. We would show him what to do, give him a push to get started but he would always insist on scooting it around with his legs. After his JDM diagnosis we realized that it was likely impossible for him to push the pedals. Poor guy! Well, Saturday we took our bikes to the park and he took off! Video evidence is below. Praise God!
Last night I was about to leave Trip's room after putting him to bed and he randomly says, "Mommy, I can write my name." What? So I get him out of bed, hand him some paper and a marker and voila! He writes his name. Again, video evidence below. After I put him back to bed I found this Grandparent's Day card in his backpack with a note from his teacher saying "We were so impressed that Trip can write his name!" So, sorry grandparents, I think I'll have to keep this one in the special Trip box. ......Way to go, Trip! We're so proud of you and your recent accomplishments!

Back to School

Preschool is finally back in full swing. Yippee for all! Ruby is now 5 but since she has a summer birthday we decided to hold onto her 1 more year.

"Bye, Mommy! See you later!"

A Very Asian Dinner

A couple of weeks ago Rex's Aunt and Uncle, Eric and Joann, came down from Heber with their kids Harley and Waverlee (Brock was at a sleepover) and we all had dinner at Sekisui. Yes, the title of this post is a well-intended joke. When I said that I was so glad that we came to eat here and that we've been waiting for a good excuse to take the kids here 16 yr. old Harley said, "What? You've been waiting for the Asians?" Ha ha. Waverlee is from China and Joann and Harley are part Korean.
It really was a fun night , especially since we got to hang out with family that we don't see very often.
We meant to get a group picture but were apparantly too pre-occupied with the yummy food and the entertaining cooking show!

After dinner we went back to our place for dessert and a hysterical game of Loaded Questions. Thanks for the fun night Decker Fam!

Zoo Day

Finally, a cold wave (well, a high in the low 80s) so we could venture to the zoo without sufffering a heat stroke.
Ruby reunited with her nemesis, Mr. Lion McMeany! Every time we're at the zoo he tries to attack her through the glass.

hee hee

I love that Vivian is patting Ruby's tummy as if she's feeling a baby kick.

And, of course, we had to end the trip with a carousel ride.

Bowling Day

I think this post is pretty self-explanatory. It's always a fun time with Vivian & Bauer!

This and That

Here's a few random events from August and September:

Rexy surprised the kids with a Mr. Tortilla Head.
YaYa and D-Daddy brought the kids some authentic Amish headwear from their trip through Pennsylvania.

Trip got an eye exam (to establish a baseline since some of his meds can cause vision side effects) and got to wear some super cool shades.

I got a new do!

And last but not least, Maumelle got an IHOP and gave out crazy disguise glasses to the kids. Random, but fun.... and tasty!!

Ruby Chinnigan

This is just too funny to not share!

Fun Times at ACH

(This probably isn't the best post to include this pic but I remembered it when I started discussing the kids playing doctor. Trip pretended that puppy's dog bowl was a "banana mask" and he was about to have surgery. Before Trip's procedures in Chicago they gave him banana flavored gas. Too cute!)

The numerous hours that we've spent at Arkansas Children's Hospital over the past few weeks, fortunately, haven't all been about port access and medicines. We've managed to make a few fun memories too. We discovered a couple of fun play areas that the kids have really enjoyed: the large one outside the main lobby and a quaint kids courtyard on the 3rd floor.

They were thrilled to have some masks to add to their doctor's kit.

Last week a child-life specialist brought the kids some toys to play with during his infusion. Yea!

Here's a cute video from the 3rd floor courtyard.

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!