These Are a Few of My Favorite Things

Time with my family fills my sole, my heart, and my belly.  Henry and I had the chance to fly into Portland and fill up on an extra dose of the good-stuff.  We were able to pack all of our favorites into this one trip (minus a trip to the Oregon Zoo and perhaps a day trip to the Oregon Coast - guess that will have to wait until next time).  My favorites, in particular order: Lillian Elise (my Lilly Girl), the sun, NW 23rd, Whole Foods, running, Paper Source, lattes, naps and curry.  Oh, how I love my time with these people that I get to call family.

Lillian, Colleen and my mom, Bobbie 

Despite the fact that we've been told that Lilly may need a second surgery to correct the ongoing instability in the C1-C2 region of her neck, I was impressed by Lilly's ability to want to get-up-and-go. She kicks arse on her walker and I'm quite sure, that if given the opportunity, Lilly would walk hand-in-hand with her mama for hours.  That little girl loves to move and although her gate is not typical and she struggles to balance without aid, it's not stopping her or slowing her down one bit.  The sun was shining and Lilly was all for heading into NW Portland to get her move-on.  

We found a gem of place just a block off 23rd.  I've been a fan of this Portland neighborhood since high school but sadly have to admit that this was my first experience at Elephant's Delicatessen.  A little slice of heaven in my book.  It was like walking into an authentic Boulangerie.  Great french bread, baked goods, espresso and a lunch menu that knocked-our-socks-off!

My parents, Colleen, and I managed three kids and hands full of sandwiches, salads, coffee and bread and made our way outside to the patio seating.  A sunny, warm day (40s) in February is a treat in the NW, so we took full advantage of the gift.

I think my favorite part of the visit was time spent at home cuddled up together.  Lazy mornings with rosy cheeked kiddos, pajamaed-up 'til noon.  It doesn't get much better than that.    

Homemade sauces, french bread, shrimp creole and wine. . . all made better while visiting around the dinner table at night.  Yes, these are a few of my favorite things.



Prior to my visit to the westside, Matt and Colleen took the kids (along with their beloved sister and brother-in-law) to the Great Wolf Lodge.  The hour and a half trek north was scheduled after Lilly's surgery to celebrate her recovery.  Even after the news of a possible second attempt at fusing, Matt and Colleen decided to celebrate Lilly kicking tail with her first surgery and recovery thus far - take that failed fusion!  Oh, and celebrate they did, as you can see:

Lillian not too sure what to think; Bear is a bit unsure himself.



Um, that didn't take long, Lil'!

Bear Bear lovin' it, too!



Poolside cousie time with Liam!

Lilly even found time to create art for the ARC of Clark County.  Lil's masterpiece will be auctioned off at the ARC's 75th Jubilee celebration in March.  Thanks, Ryan, for letting Lilly get her art on!


Aerial view of Lillian's work of art.



What precision!




Lilly has the touch!



Lillian Pollock, is that you?

The artist!

Along with swimming and loving and painting last week, Lilly had an appointment on Friday, at OHSU, where her MRI and CAT scan were performed.  Though it is always stressful for Matt and Colleen to put Lilly through a "you're going under" medical procedure, Friday's testing turned out to be a cinch.  Colleen often refers to perspective. Yeah, having your baby placed into deep sedation for two hours is nothing when you've kissed your love goodbye before heading into four hours of surgery that would permanently alter her tiny body. Perspective=gratitude for Colleen, at least it did on Friday. When the three reunited after the MRI/CAT sedation, Lilly boisterously requested juice and crackers and was able to smile and move and tease. In fact, while Matt held her in the elevator on their way to the car she looked at the marbled flooring and said, "Look, a shark."  Um, I'll have what she had; I doubt Lilly remembered much of Friday morning. Thankfulness for the gift of experience and perspective were present last Friday, along with a a few laughs.  Matt and Colleen will speak with the neurosurgeon regarding the imaging results in two weeks.  Cue the Jeopardy music . . . let the waiting continue.

I've returned home refreshed and renewed.  Lilly continues to inspire me to be a better daughter, sister, and friend.  Somehow, she's mastered these three roles at the ripe young age of "almost 4."  She and I are sole-sisters and, because of her, I've pushed my shy self to get out there, help others, and make a difference.  In honor of Lilly, I've met with pediatric therapists, volunteers, and parents with the hope of spreading the word about the Special Olympics, in particular, the Young Athletes Program.  Last Tuesday morning, with the help of three great employees of Idaho Special Olympics, I welcomed the Young Athletes program to North Idaho College.  This program is growing and being embraced in a big way. Lilly's spirit has moved me to give back and increase the awareness and inclusion of children of all abilities.  I had the help of over 20 volunteers, and over 20 Young Athletes turned-it-out and are now on their way to becoming Olympians.  Lilly, look what you've inspired me to do. . . .

These kits are the tools we use with our Young Athletes.  All equipment is donated by Special Olympics and the Mattel Children's Foundation.

Many favorites were enjoyed and lots of Lilly lovin' was had during our visit.  As well, many of you have been inspired by Lilly and you've been getting up to move in honor of this amazing little girl.  In the past two weeks, another 183 miles have been logged for Lilly.  Movement by y'all included running, walking, swimming and biking.  We're well on our way to logging 1,000 miles for Lilly!  Let's keep up the great work and please don't forget to email or FB me to share your mileage.  Every step counts and I thank you all so much for keeping our Lilly girl in your thoughts and prayers.  I think it's working.  I know it is.   

Lilly thanks you too!

This is a tally for the last two weeks:

Jill:   12

Shannon:  31 (8 miles running, 3 miles swimming, 20 miles biking)

Colleen:  7

Meredith:  67

Darin:  60

Kate:  6

Angi:  3 indoor soccer games per week

New grand total for Loggin' it for Lilly:  321

A Week at a Glance

Loggin' it for Lilly is off to a great start!  See the bottom of this post for mileage totals for this past week.  In the meantime, I asked Colleen to fill us all in on Lilly's busy schedule.  She's been one busy girl, and Colleen and Matt continue to push forward and find comfort in kind words and the continuous support they find from family and friends.  Colleen wrote:

I didn't expect last Thursday afternoon to involve a trip to the campus where I studied and played and laughed and loved for four years of what now seems like my youth.  Oh, the University of Portland - a time capsule of a place where a deep sense of belonging and peacefulness fills me to my core.  My sweet, faithfilled sista-in-law, Rachel, called that morning to tell me that St. Blaise's feast day was being celebrated at UP and that Lilly could receive a blessing by the presiding priest.  Though St. Blaise is most known as the patron saint for those with throat ailments, I figured Lilly's spine and throat are in the same vicinity - couldn't hurt, right?  It just so happened that Lil' and I had an appointment in Forest Park that same afternoon, 15 minutes from the University, so I scrambled even more quickly than I normally do to get myself and both kids out the door.  Evie, another sista-in-law extraordinaire, agreed to watch Barrett while Lillian and I spent the afternoon in north Portland.  I plucked Barrett and his big-boy-backpack from the car, passed him off to Evie, and headed south with my little angel, well . . .  my little turkey, that is. 

Front entrance to UP


Mass held at Christie Hall while renovations are underway at the Christ the Teacher Chapel.




St. John's bridge heading west to Forest Park. Lilly visited a chiropractic massage therapist who has worked with Lilly several times in the last year. This bridge is mile 17 on the Portland Marathon course - awesome view! 


The following day, Matt and I took Lilly to the Down syndrome Clinic at OHSU.  Dr. Pinter, who heads up the clinic, is an exuberant, fast-talking, kid-loving neurologist who took his interest and knowledge of Down syndrome and created a resource for parents and people with DS: a team of specialists and therapists evaluate and share information and recommendations on an annual basis.  This was our second year at the Clinic, so we were able to compare her progress over the last year.  Everyone who evaluated Lilly last February remembered our unforgettable gal and thought she had stretched and grown in many ways over the last 12 months.

 

Lilly and Dr. Pinter reconnecting.

 


Taking a peek. By the way, Lilly rocked her hearing test, and I am fairly certain the audiologist fell in love!




Lilly showing off her skills.


  

Down she goes.


  

Serious work!




Really, Lilly did enjoy herself.  Major game face, though.


 

Mary Lou, watch out!

Overall, our trip to the Down syndrome Clinic was positive.  Of course, we hoped Dr. Pinter would have shared uplifting news about Lilly's fusion, but without the next MRI and CAT scan completed, it was difficult for him to render an opinion.  He did though, talk and share and support us in many other ways.  In fact, after our time with him, Dr. Pinter tracked us down in the hallway where Lilly was speed racing with her walker.  He called us into his office and had us look at Lil's first MRI film; the images looked better than he remembered.  There does not seem to be much, if any, liquefaction of her spinal cord at the area of bruising (remember it is the instability of her spine at the C1/C2 region that caused compression/bruising of her spinal cord).  If there is liquefaction, that area of the spinal cord would be irreversibly damaged.  So, Dr. Pinter seemed hopeful and positive that Lilly will make progress.

On Monday morning, after our visit to the Down syndrome Clinic, Ryan (Lilly's PT who joined us at OHSU) wrote:

Matt and Colleen,

Outside of the uncertainty about MRIs, second opinions, and surgery, I wanted to “re-celebrate” the fact that Lilly genuinely impressed Dr. Pinter, the Speech team, the OT, and the audiologist!  Each of them not only commended Lilly in front of us, but also had done so to their colleagues while not with us in the room.  Lilly has amazing attention, imagination, language variety, focus, intent, fine manipulation skill, hearing, demeanor, intelligence, and sense of others—and all of these put her in a highly sought after place that almost guarantees success going into kindergarten and onward in life.  That is what I drove away from OHSU with…a sincere feeling that Lilly’s life is going to be rich and productive, that she is virtually guaranteed to successfully contribute to the world in ways that a majority of kids/adults around her will never realize.  Please never lose sight of that!

Ryan 

Thank you, Ryan!


It's amazing what a little tulle and some good music will do to take your mind off your worries.  Barrett, in his mismatched socks and all, has taken to the tutu.  He's got music in his bones like his big sis and often needs to wear something with a little flow-to-it when he dances.  Bear balanced his love for the tutu with his first ever "guy-time" visit to the Sportsman's Show with his dada and uncles this weekend.  Ah, what a well-balanced boy!



Saturday morning mayhem




Dancin' with her daddy!


 

Feel the burn!



Check out the balance and the flat feet on that little miss!



 




Ready to shop until she drops!




Lilly wants to thank all of you for loggin' miles for her this past week.  Because of you, a total of 138.5 miles were dedicated to our Lilly girl.  Three hours of gym cardio/weight class were rocked out, and a number of you contacted me just to say that Lilly has motivated them to start moving more.  Yippee!!! That's exactly what I was hoping for.  Please keep up the good work, pass along this blog to family and friends and start spreading the word for Lilly.  I hope to have 1,000 miles logged for her before her possible surgery.  I'd love for Lilly to look back at this time and see that so many people were sending her positive thoughts, prayers, and dedicating a bit of their movement to her.  I'll be loggin' it with Lilly this coming week.  Henry and I get to visit with the Roscoes this week, and I can't wait to gobble up Lilly's goodness.  Thank you to all that dedicated movement to Lilly.  Keep it comin'!   

Shannon:  5 miles


Cecily: 11.5 miles


Danielle: 4 miles 


Katie:  3 miles


Andi: 1 mile


Jill: 9 miles


Stan:  35 miles of skiing


Sally: 3 hrs of gym cardio/weight classes


Colleen: 12 miles


Darin: 33  miles


Kate: 15 miles


Jinny:  6 miles


Bobbie:  1 mile


Total:  138.5

 

Loggin' it for Lilly

When Colleen and I were young, we would FIGHT!  We'd strike with stinging words and throw fists, shoes, and even wire hangers.  Eventually the white flag would wave (I'd have to say it was usually Colleen as I've always had a few pounds on her), or our parents would step in; each time our mom and dad would signal the end of the battle with, "Girls, you'll regret being so mean to each other: you'll be best friends someday."  At the time, we didn't believe them . . . we'd pack in a few more blows and be done with it.  Well, until the next fight was ready to roll. 

But as we've grown, we have become exactly what our parents said we would be.  Best friends.  And perhaps we needed to beat-the-holy-snot out of each other in order to prove our loyalty to one another.  I once wrote:  "Colleen, thanks for being my partner in crime, my daydreaming co-pilot, my mothering mentor, my morning coffee-on-the-phone-date, my Wonder Twin superpower sidekick, my sister, my best friend."  Our parents were right, and thank goodness they were.

Curly Girl Design

We're adults now and the fist fights are finally over.  Instead of bouncing wire hangers off each other, we now bounce around ideas on parenting, cooking, and the stuff that makes life, life.  We're also the first to respond when the other is facing loads of challenge.  We've supported each other as women, as sisters and as best friends for years now.  Sure, the white flags wave from time to time and if one of us is in need, the other is the first to arrive - fully equipped with reinforcement and the exact prescription to lighten the load.  For the past few years, we've held on tight.  We work out the knots and hold each other up when the load seems too heavy.  And boy, has that helped a girl out! 


We've been side-by-side through all of life's loads.  There's been thyroid surgery, appendectomies, infertility, Down syndrome, baby boys and neck surgery.  And through it all, we've held each other up and moved through some pretty tough challenges surprisingly well.       

I know as women and as mothers, we all wear a number of hats and carry loads of luggage on any given day.  And it's not a competition between us women to see who might have the heaviest load.  But, I'd say that Colleen has met her quota for weight-bearing loads this past year.  As her sister, I know that Colleen is now feeling it; the motherload of all loads.  Although she remains one tough mama, and doesn't wallow in woefulness for long, I know that she's tired of battling and getting the wind knocked out of her.  And I wish more than anything that I could drop everything, rush to her side, pick up her extra bags of luggage, schlep them over my shoulder, and run this marathon for her.  We're twins and I'm quite sure we could switch places even if it is for just a few short days - no one would notice, right?  Her little white flag is waving and, although I know that I can not fight this fight for her, I will remain her support, her sister, and her friend. 

Through all of this, I realize that Colleen stays so strong because of one thing - Lilly.  Instead of rolling up into the fetal position or winding herself into a ball of nerves, Colleen is trying so hard to push forward.  She realizes that if a second surgery is truly a possibility, she's going to have to be at her strongest.  This not only means that she must prepare herself mentally (again), but she realized after Lilly's first surgery that she must become stronger, physically.  Lilly is growing.  She's going to be four in March and is getting taller and adding on weight as she grows.  When you couple Lilly with the weight of a cumbersome halo, she's bionic and becomes one heavy kid.  The first surgery not only took a tole on Lilly, but Colleen realized that her own back and arms suffered after weeks (more like years) of picking up Lilly, moving her up the stairs, down the stairs, into bed, to the art table, into the car, to the store, back up the stairs, to the dinner table, down the hall and into bed.  Whew!

My sis is one strong gal

Instead of sitting on the couch and eating chocolate all day (although that sounds like a pretty fabulous option to me) Colleen's determined to be her best for Lilly.  After reading a blog post by another inspirational mama, Rachel Coleman from Signing Time, Colleen has decided to run like hell.  Not away from what she, Lilly, and her family are facing, but running like hell to be the best she can be for Lilly.  She's running outside, rain or shine, and pushing a 60 lb load - a jogging stroller packed full of snacks, board books, and two cheerful kiddos.  She's training to become strong. . . strong for Lilly.  Colleen continues with yoga in order to build muscle and is amping-up her running to build endurance.  She and a number of friends have recently signed up for the Girlfriends Half Marathon, and the goal is to support each other as girlfriends and run for those women/little ladies that cannot run for themselves.  

As much as I'd like to drop everything and run to Colleen's side, I realize that's not an option.  But what I can do is be the best sister and aunt I know how to be. . . and I can run like hell, too.  I've decided to run in honor of Lilly and log my runs, dedicating each mile to her.  Lilly wants nothing more than to move, dance, walk and run - something that all of us take for granted.  If she's not able to walk and run on her own right now, I'll do it for her.  Wouldn't it be great if we all dedicate a few steps, a 30 minute walk, an extra mile, to Lilly.  Let's log-it-for-Lilly!  Seriously!  Let's see how many miles we can walk/skip/hop/dance/run for Lillian Elise.  

Email or FB me the mileage that you would like to dedicate to Lilly this upcoming week.  I will update the blog over time with the mileage busted-out for little miss Lil'.  If you'd like me to include your name with your mileage, great; if you'd rather not include your name on the mileage postings, just let me know.  Let's do this for Lilly!

Colleen, thank you for staying strong for your little girl and your family.  I'll fight right along side you (even if it's only in spirit) and carry any extra loads that you need help haulin'.  And Lilly, your Auntie Kiki loves you and will be running for you until you get back on your own two feet.

"Most people never run far enough on their first wind to find out they've got a second. Give your dreams all you've got and you'll be amazed at the energy that comes out of you."   - William James

 kdhvaughan@gmail.com   

The Unexpected

Colleen wrote:

It seems to take me a good three days to detox from nightly fist-fulls of dark chocolate chips, or to become comfortable in a new routine, or to deal with unexpected news. Yup, and this time my three-day-dealing spell didn’t disappoint. Last Saturday marked the third day of processing the news that Matt and I never, and I mean NEVER, expected Lilly’s neurosurgeon to say.  We are both at a better place since Lilly's appointment a week ago today.  Even still, it doesn’t seem possible, plausible, probably . . . you can fill in the statistical term that applies - I'm the one who squeaked by in college stats.

Lilly and I arrived at OHSU’s Health and Healing campus on Wednesday afternoon and made our first stop at imaging. X-rays were completed by tacking stickers on a bar above and below Lilly’s head to get the best angle for the shots. We’ve had three x-rays since the surgery, but all were completed with the halo and all looked as they should. The purpose of the imaging, then and on Wednesday, was to evaluate the alignment of Lilly's spine at the fusion site.

After the x-rays were completed, Lilly and I crowded into the main elevator, checked in at the neurology floor, and were ushered to an exam room where we waited for an hour. We perfected etch-a-sketch peacocks, sang and signed the alphabet, told stories, played “I Spy”, and danced in a full length mirror more times than I can count. During our wait, I could make out the sound of Lilly’s doc opening and closing doors, introducing himself, sharing muffled information, saying his goodbyes, and beginning the process over and over until I heard him say, “In what room is Lilly?” After a quick hello and a "How's Lilly doing", he said it . . . “Well, it looks like there is still instability.”

I don't recall what was said after that, at least for the first few seconds, but it was clear her doctor was disappointed in the fusion and surprised that she didn’t fuse like he had expected. In young children, a bone's ability to fuse is remarkable. In fact, one neurosurgeon recommended that we use a donor bone rather than Lilly’s rib bone for the fusion because, “. . . kids can fuse to anything.” After six weeks of halo wear, Lilly’s C1/C2 vertebrae should not have shown any sign of instability . . . but there is some movement.

We have an MRI and CAT scan scheduled for late February and will consult with her neurosurgeon  two weeks later; the crazy waiting game begins, again. If the MRI and CAT scan indicate instability, we will more than likely DO. THIS. WHOLE. THING. AGAIN. But, we are not going to proceed with another surgery until we find out why the heck Lilly’s spine did not heal the way it should.

Thankfully, we have an appointment at the Down syndrome Clinic at OHSU this week. What perfect timing. A neurologist, by the name of Dr. Pinter, who heads up the Clinic was the first person to inform us of Lilly’s abnormal MRI last June. We met him last February for Lilly’s initial evaluation at the DSC. Matt and I are setting aside most of our concern and sadness and worry until we can speak with Dr. Pinter. Lilly’s PT, Ryan, will also be with us at our annual evaluation - thank goodness!  Ryan is recommending that we have several blood tests completed that day to possibly determine what may be keeping Lilly from healing correctly.

Oh, there are so many things I want to and need to say - even shout. Mostly, after a full week of recovering from the biggest-cleat-kick-to-the-gut-of-them-all, I am thankful and even more in love with my little family. I again, have recalibrated and refocused myself to be more aware of Matt, Lilly, and Barrett. I don’t want to miss a moment of the three of them - just as they are, right now.   In fact, I best go to bed so I have energy for our little sprite and little-boy-wonder in the morning.  Oh, and you better believe I'll savor a fist-full of dark chocolate chips with my coffee in the morn.  Cheers!!!