March 21st is a big day of celebration. We've officially entered spring - a time that embraces rebirth, renewal and regrowth. 3.21 marks a another reason for celebration . . . it's World Down Syndrome Day! This date represents 3 copies of the 21st chromosome, which gives people with Down syndrome a little somethin' extra. As my family and I like to say, the more the merrier! This is yet another reason to celebrate our Lillian Elise Roscoe!!! Please check out Kelly Hampton's site for a fantastically written piece about 3.21.
Hello family. Matt and I wanted to update you all on Lillian Elise. We had an appointment with her neurosurgeon yesterday morning, and he began our visit by saying Lilly's spinal cord is healing. In Lil's most recent MRI, which was completed two weeks ago, he is unable to find much (if any) abnormality on her cord. Awesome! Lilly is still, as you know, moving similarly to the way she moved prior to surgery. That is because her body has moved in this manner for more than two years. So, we are going to focus her therapies and daily activity on this neuro/muscular issue. No small feat, but we are feeling empowered and hopeful that Lilly will continue to make changes now that her cord is recovering.
Though we were given good news about her spinal cord, we were told that Lilly will still need to undergo a second C1/C2 fusion to stabilize her cervical spine. The method of surgery has not yet been decided (I will speak with the neurosurgeon via phone tomorrow morning about the recommended approach), but we do know that Lilly will be in a "real" halo for this recovery. We've been told that it is a very painful procedure, but that it must be done to insure a proper fusion. I know there may be questions, so call or email if you'd like. Hopefully we will all see each other soon.
Off to squeeze Lilly and Barrett. To heck with dinner and trying to clean a creatively chaotic house!
Love you all,
P. S. I did speak with Lilly's neurosurgeon by phone last Friday afternoon, and he is still in need of more time to discuss which approach to take with Lilly. He sent Lilly's films to a neurosurgeon in Utah who has worked on kids her size using a method her current doctor has not preformed. The neurosurgeon from Utah should have his opinion rendered soon.
Other than talking with Lillian's neurosurgeon, we are keeping busy making appearances at gala events and running about town (literally). Last Saturday night Matt, Lilly, and I attended the ARC of Clark County's 75th Annual Diamond Jubilee Celebration. I was asked to speak to the 300 celebration attendees to raise awareness about PRIDE for Kids, an ARC program, which has supported Lilly's early intervention/private therapy since she was two months old. What a lovely evening. And . . . Matt's sister, Evie, and her husband, Colin, surprised me by attending the dinner and also securing the winning bid for Lillian's artwork. Clearly, you cannot mess with my sista-in-law: she's a sneakily clever, out-bidding, art-buying, Lilly-lovin' auntie! Love to you, Evie. Nice to keep Lilly's art in the family.
|Elbows, Colleen, elbows!|
|Oh, Uncle Colin!|
The next morning, I dragged my over-tired be-hind out of bed and, once the coffee kicked in, slammed it into gear and drove myself into downtown Portland for the Shamrock Run. It was my first time running in the race, and it won't be my last. In true "Colleen style" I forgot my timing chip and didn't realize it until five minutes prior to the start. The announcer, whose voice hovered above thousands of runners, shouted that "Your timing chip should be around your ankle. Not on your wrist, not under your hat . . . ." How about "not on your freakin' living room rug?" Classic. I do like to leave a trail wherever I go, and the kids had something to remember me by while I was gone. As well, Lilly found the timing chip to be a perfect accessory to her Saturday morning pjs. Anyway, in a true "go with the flow style", I asked the gal next to me for the time as we passed through the starting gate: 8:06am. I tracked down a watch-wearing runner as I crossed the finish line: 8:52am. So, my not-so-scientific calculation had me at 5 miles in 46 minutes. That will do. Better than the 14 minute mile pace I used to clock for Ms. Hockey in 6th grade PE, right?
In the last couple weeks, we've all logged more miles for Lil'. . . 144.3 miles to be exact.
|I saw this mama/daughter duo and thought of Colleen and Lil'.|
So, a grand total of 465.3 miles have been logged dedicated and logged for Lilly! Let's shoot for 1,000 before her next surgery. . . we're thinking that April or May will be the next scheduled date. Pass this idea along to family and friends. . . our family has been so encouraged by your support and Lilly is feelin' the love.
Darin: 59 miles
144.3 new miles logged for Lil'.
144.3 new miles logged for Lil'.