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