Six Months and Picture Galore!

Lucia at her 6 Month Appointment!

Our little lu is going to be 6 months old on Wednesday!!!  She shares a half birthday with her daddy who will be 35, and her grandpa, who will be 88 on Wednesday, so needless to say October 26th is a very special day! Jason and I celebrated his b-day on Saturday night with a night away- his mom and Mario treated us to a night at the JW Marriott (silent auction item won by mario at lu's party) and friends had gifted us Elway's restaurant gift cards- so it truly was a treat!  Mario and Linda insisted on having Lucia stay with them all night as well...her second slumber party there- Lucia is one loved and lucky granddaughter-thank you!  So Jason, myself, and our dogs had a night away.  We know the dogs appreciated being front and center again for a night..   Six months now and can't even come close to imagining life without lu.  Love you so much lu-bird.

Her 6 month appointment went well today. A 16lb and 26 inch long Little Lady Lu-50% on the button!  We also had physical therapy today.  Her therapist did a motor skills test so we could have some 'baselines' to work on and give us some information.  Its a standard test on different physical checks and balances ranging from 0-2 scoring.  We have some improvements to work on and we will do our best.  Love you lu!

Lucia continues to bring us closer with friends and family.  A cousin I had not talked to in years and I reconnected and she sent a beautiful and fun package for Lucia this week.  Thank you Kim and her daughter, Tigi for their spectacular Lucia gifts-more peas, a pink frilly outfit, amongst some other goodies, and just to catch up a bit with them was very nice!

Thank you to so many that donated to the party last Saturday.  We are obviously so very touched by the success but also having post party blues as well :)   Thank you Michael Donnelly, Eschlemans, Redmonds, Ann Marsh, Flemmings, Tom Quirk, Alicia Gilbert, Jeffrey Lind, Aliza and David, John Unruh, Susan Foster, Danfords,  Catherine Kelley, Matthew Zettel, Gardners, Dyers, Manions, Apgars, Dr Guarin and Dr Rusakow, Mercedes and Kevin, Wilsons, Dr. Laurel Benson, Anne Paetz, Fuchs, Dolans, Rosenthals, Maggie and Alistair Miller, McManigals, Deschs, Andersons, Mallons, and a very special thank you to my relative, Joe Marsh for your kind donation and silent auction items.  Thank you also to my dad's dear friend, Bob Klopfer for your amazing generosity.  I know your friendship means so much to my dad, and that alone means so much to all of us..
Jason and I feel so fortunate and continue to be stunned by the overflow of generosity with words, gifts, prayers and more.  Enjoy the pictures...i wish there were more!

Love, Jason, Jules and our little six month old sweet bird, Lu.

Kimmy and my dad!

Lu and her nonie Linda

Marne, Kent, and Marie

me and tonya

Jason's mom Linda and my brother Andy

my parents!

andy, cayla, erin and chris

joey, galo and katie

pretty lucia!

me and mama

tonya and lu

scott and amanda moss and rachelle

Galo and Katie

elyse, me and laura

my mom and gene foster

maura and elyse

me, elyse, ashley and shannon

boys

hosts!

girls!

chris, eric and kevin

lu's pround parents

joe and brian

check in!

jason, ryan, brian and gavin

andy, joey and brad

girls!

beth and lu

group shot!

magan, kirsten, and aimee

Vali's

elyse and andi

funny boys

kim and me

love my lu!

Love my dad!

 THANK YOU ALL!!! XOXOXOXOXO

A for Oxygen!

queen Lu with her George Washington headpiece or stroller head support and no O2 tube!

Still so much to say about last week's events and so many to thank but I'm going to keep it short and sweet as it's been a busy week!

Lucia had an 'in home sleep study' Monday and Tuesday night.  She always sleeps hooked up to a pulse-oximeter to measure her oxygen/pulse levels at night but this study involved the medical supply company coming by and setting up a much more complex machine so her levels could be recorded and reviewed by her doctor, her pulminologist, the lovely Margarita.  As she is always on oxygen,  Margarita wanted to be sure it was enough oxygen and how she was doing...the result... an A! Lucia's average was around 95 and that is awesome (should be between 92-100) !  So, feeling good, I took off that little nasal cannula (oxygen tube in her nose) the next day for an hour and she stayed in the 90's (alert and awake levels tend to be better).  So we kept it out another hour, and another and then another, the whole time measuring her oxygen levels and she stayed above 90 the whole darn day! We did the same today, that's right- no tube in that cute button nose for two days in a row! We've always noticed her big blue eyes and cute button nose but without the tube-so free and cute in the Mile Hi thin air city!  She'll be using oxygen at night for a while, we are told, but if we can lose it during the day-here and there- sweet cherry pie!

Some tube-free nose time, Beautiful Benefit, Blessings, Amen!  Onward and Upward!  Our Lu-bird's lungs are getting stronger!  Tweet Tweet-So So Sweet!

Nite Nite

Thank you for all the online Lucia Light T-Shirt purchases this week-
Amy Thompson, Leigh and Lizzie Bobilya, Topaz Roberts,  Colleen O'Donnell, Katie Heaps and Heidi Harding!

Thank you Batcha's for the adorable sock monkey and Gigi and Fisher for the Ghost Pumpkin Surprise!

Love you Lu!

St. Lucia White Party

St. Lucia White Party!!

If you are, by chance,  blessed with a child born of special needs, we know that throughout the pain of the unknown, the pain of tough medical moments, the pain of going down an unplanned and different road, there are tulips that bloom along the way.  Along the journey they may bloom bigger and brighter than others, but there are people that will water and nourish the tulips, and help them bloom.  On Saturday night, Jason, Lucia and I danced and skipped along our unknown and different path, holding hands with over 160 of some of these special people, amongst many beautiful and bright tulips.  

Yes, we have only just begun this journey, a little less than 6 months, but after a night like Saturday...we know we are truly blessed, and not alone, indeed.

It was a few months ago that some of our friends asked if we were free on October 15th.  When we said yes, we were given only a few details of what would unfold.  Little by little, we found out about a benefit that was in the works in honor of Lucia.  The St. Lucia White Party honoring Lucia Dawkins, benefiting PKS Kids.  "People want to help, but they don't know what to do" was what my sister-in-law, and matron of honor at our wedding, Kim Hicks told me, and she came up with the idea.   Kim, and four of my good friends, Laura Huff, Elyse Slayton, Megan Gilles and Greta Swanson O'Dwyer, were all a part and it could not have been better.  I would catch wind of a 'meeting night' and that night I couldn't help smiling, tearing up and loving my family, just thinking about the girls doing what they were doing.  The venue chosen was a independent art gallery, that just happened to be owned by Lucia's GI doctor, unbeknownst to the girls.  Countless hours went into the planning, paper invitations sent out, email updates, silent auction and raffle items, who would be when where, guest lists, party lists, music play lists, food lists, a website dedicated to the event and above all details filled with love.  The night was perfect.  

Jason had tentatively planned a 'boys weekend' that weekend but when I told him about the party for Lucia he immediately said they would pick another weekend.  So...he told his friends about the 'change of weekends' and they individually responded with a 'we'll be there, this IS the weekend for our weekend'.  Brian Killea, Ryan Smith, Joe Escheman, and Gavin Curley flew across the country to be by Jason's side.  Brian even said to Jason half way through the night, "if one more person asks me if i flew in just for this party I'm gonna lose it.  YES, i flew in JUST for THIS PARTY-OF COURSE I WOULDN'T MISS IT". We love you Brian.

My parents were also here from Ohio to show their love and support.  Jason's mom and Mario shortened their out of town trip to be back in time.  Jason's dad, Kent,  hosted a golf day on Saturday for all the visiting boys.  Thank you parents for all you did and do. 

"All White Attire" the invitation read, and all that attended were in all white, indeed.  It was so beautiful to just look around the gallery.  White walls with art, beautiful, delicious and gourmet food on white tablecloths (a lot of which was prepared by Kim and my dad), a very long table full of amazing silent auction items, and 'all white attire' dressed guests,  filled the room to show their love and support for our, not yet 6 month old, Little Lu.   

From 7PM-past 11PM Jason, Lucia and I felt the love and saw the tulips grow bigger and bigger with every minute.  We shared a few words to our guests, and I could not have been prouder of my husband, as I listened and fell in love all over again. 

The St. Lucia White Party, a night of so much planning from five very special girls,  a night of love, light, celebration, and thankfulness.  Over $20,000 was raised for PKS Kids.  Some people have told us, 'special children choose their special parents'..well we do believe that God gave us Lucia for reason, but we do know that He had all our friends and family in mind when Lucia 'chose us' because she chose you all too.   Thank you for adding your water, nourishment and love to support Lucia and other PKS Kids Bloom to their most brightest and most beautiful.  

Thank you to all the business' and individuals (listed below) for their silent auction and raffle contributions.  A special thank you to the O'Donnell boys and Brian Diessner, who were not able to attend,  but for their silent auction donation of the grand San Francisco weekend.  And to their parents, we were sorry you could not attend Bonnie,  our love and prayers go out to you and Dick.  More thank yous and more pictures to come...

With so much love amongst a field of tulips, 

Jason, Juliet and our most shining light, Lucia

Me w/ the Hostesses - Greta, Megan, Elyse, Laura, and Kimmy

LUCIA! adorned in lucia t-shirts as a last minute sales pitch-with an amazing 11PM smile!  

Jason, Brian, Ryan, Joe and Gavin, enjoying a silent auction wine purchase late night...before they fly out the next morning. 

Silent auction festivities...

Again..more thank yous and pictures to come..thank you Andy Slayton for photgraphing the night..

ST. LUCIA PARTY FOR PKS KIDS

in honor of LUCIA DAWKINS

THANK YOU to the individuals and businesses for the generous donations to the St. Lucia Party auction and raffle.  All proceeds will be donated to PKS Kids and are greatly appreciated.  Thank you Paper Lady for the invitations

THANK YOU in advance for your participation!

3 nights at Ceiba Del Mar in Puerto Morelos, Riviera Maya + $500 voucher towards airfare

1 night at The Broadmoor in Colorado Springs

1 night at the JW Marriot in Cherry Creek Denver

1 night at the Purple Mountain Bed & Breakfast in Crested Butte

1 week stay in Hilton Head, South Carolina

A San Francisco weekend – 2 night stay at The Fairmont on Nobb Hill, boat trip, $200 dinner + $600 voucher towards airfare 

Sonnenalp Resort of Vail – 1 round of golf for 4

4 Club Level Tickets to see the Colorado Avalanche on November 28, 2011

4 Lower Bowl Colorado Avalanche tickets – any game

Authentic Colorado Avalanche Jersey signed by Matt Duchene

Angela Beldy Photography – 1.5 hour Family Photo Session

Crazy Merchant – Little Girl’s Birthday Jewelry Party

Mannheim Steamroller tickets at the Buell Theater-Joe Marsh

Lord of the Dance tickets at the Buell Theater- Joe Marsh

Earl’s Restaurant – Chef’s Table Tasting Party for 8

Table Six – $100 Gift Certificate

Tables – $100 Gift Certificate

Elway’s – $100 Gift Certificate

Cherry Creek Grill – $50 Gift Certificate

Pary’s on 28^th Restaurant – $50 Gift Certificate

Oblio’s Pizzeria – (2) 1 Large Pizza and a bottle of wine

Tony’s Market – $40 Gift Cards + 8 steak temperature skewers

Saucy Chef – Personal Chef “Breakfast in Bed” basket for 2 delivered to your home

2 bottles of 2004 Etude Cabernet from a private collection

2005 Silver Oak Cabernet and 2003 Domaine Mazilly Pere & Fils Burgandy from a private collection + leather wine carrying case

Framed Colorado Nature Photograph by Stan Hill

Framed Red Rocks Photograph by Jay Scherer

Artwork from Sarah Cotten

Spinelli’s Market – Dinner for 4

Ciji’s Pet Store – $50 Gift Certificate

West Elm – $75 Gift Card + Throw Blanket

Garbarini – BCBG snakeskin clutch

Lululemon – Yoga Starter Kit

Stella & Dot Jewelry & Accessories from Kirsten Vali

Spa Vital Facial at Pura Vida

Lattise and Botox Package

Hair Cut and Highlight from Jaque Lord, Juliet’s hair stylist

Private Yoga Class with Blair Vaughn

PURA VIDA:

- (2) 1-month Memberships

- (5) 1 hour private Pilates class

- 1 private 30 minute Kinesis class for 4

- 1 private 30 minute Pilates & 30 minute Kinesis class

- (2) 1 hour personal training session

10 pack to Sacred I yoga studio

Lia Sophia from Liz Hicks

RAFFLE ITEMS (must be present to win)

4 Denver Outlaw Lacrosse tickets – 2012 opening game

Tokyo Joe’s - $30 Gift Cards

Park Hill Cleaners - $20 Gift Certificate

Mici Handcrafted Italian Restaurant in Cherry Creek – $75 in Gift Certificates

Pasquini’s Pizzeria - $50 in Gift Certificates

Artisan Center in Cherry Creek - $20 Gift Certificates

Park Hill Cleaners - $20 Gift Certificate

Grape Expectations Wine Store - $25 Gift Certificate

Aji Mexican Restaurant Boulder - $25 Gift Certificate + 2 drinks

Mici Handcrafted Italian Restaurant in Cherry Creek – $75 in Gift Certificates

Blu Clothing Boutique in Cherry Creek – $30 Gift Certificate

Moss Pink Flora & Botanicals – Goodie Bag

Outdoor Divas Cherry Creek – Running Goodie Bag

1 Lucia “Light” PKS Kids T

Blessed

the welcome poster to the party

The St. Lucia White Party was amazing, perfect, beautiful, fabulous.  More to come..but thank you to all that were a part of the most special event for our precious Little Lu.  We are so blessed.
Signing off for a much needed night of sleep...dreaming about the wonderful event last night...

xoxoxo

the very blessed dawkins family

You just never know

Lucia in her new bumbo seat with her new friend, Dutchess the cow. 

Lucia had a doctor's appointment today and while we were waiting to see her surgeon, Dr. Rothenburg, another little girl was wheeled into the waiting room.  She appeared to be about 6 years old or so.  I hesitated at first to ask anything and then I remembered how I appreciate when people ask about Lucia.  They care to ask and not just wonder and feel sorry that something might be wrong.  So I asked her mom,  does she have a syndrome of some kind?  I thought for sure her mom would say yes.  However, she responded that her daughter, Mackenzie, had choked on a cracker when she was 18 months old, and was oxygen deprived.  She is now wheelchair bound, can't talk or hold her head up very well, but she smiled and looked very happy.  There are so many different reasons for special kids, some are born with a rare syndrome and some have a path that changes course later in life...you just never know... Whatever the reason, it happens and that little Mackenzie seemed as happy and as sweet as could be.  She even had the cutest purple wheelchair I had ever seen...and I thought if Lucia needs one of those later in life, I would choose that one and believe Lucia would feel sporty and pretty on it.  I do have a very vivid picture of her riding a tricycle too..biking to school..with a basket...and maybe a pink and orange flag.
For now we are working on therapy and this week we introduced an orange bumbo (pictured above)!  Just a little time in that orange bumbo as her neck is not too strong but... little by little..step by step..smile by smile..spoonful by spoonful..we are making progress!
Thank you again for all the work and planning that has gone into the PKS Benefit this Saturday.  My parents arrived yesterday and we can't wait!

Bye-bo and lots of very special love,

the Dawkins

A Giggle and Good News!

When I take little Lu's hands in my hands and pat her little hands on my cheeks she seems to smile and tonight she even busted out a little giggle! A giggle from our girl!  A sweet little giggle! Little Lu let out a little giggle!!  These little milestones are so sweet and special and a blessing, and we'll take them when you are ready to give them out Little Lu!  You can witness it above :)

We sure love Lucia's Pulminologist, Margarita Guarin, especially when she gives us good news!  I shared our excitement about Lu being off oxygen in Ohio and she said, that's good because it means her sleep apnea truly is central.  Central apnea means central nervous system, where obstructed apnea means something is blocking her being able to breath properly.  So....the possibility of a tracheostomy is confirmed to be negative!!  I have always been dreading the next sleep study for fear that they would say it was/is obstructed apnea but No Way Jose! Ah yes, very very very very fabulous to hear that.  She had many nice things to say about Lucia, and she is pleased with what she sees!  Music to our ears!

Thank you Cayla for the oh so fun and so very cute g-button covers!  We absolutely love them- she no longer wears blah medical gauze around that button- she has cute fabric colorful covers-today she is wearing a duck print. www.feedingessentials.com if you have need for a g-button cover!  Tomorrow we are going to share one with a friend who just got a g-button today,  Lexi Skinner.  Thank you Katy Linstroth for your nice card, thank you Aunt Kathy for the beautiful pictures, and thank you Lucy and Lizzie for the Lucia burp cloths!

This week is the countdown for the St. Lucia White Party- we can't wait! A giggle, a good report and a party-this is something very very special.  Thank you God for giving us so much!  xoxo

Lucia's cute new fashonista accessory on her g-button!

Fire-No. Firetruck-YES!!

Firemen to the Rescue!!!

Well, Lucia has met firemen and she likes them for a few reasons...they are cute, they are speedy when needed-about 3-5 minutes, and they came to her and her dogs rescue today!

Mommy and Lu started out with a great morning.  Play date with Tonya and Truly McCabe, Occupational Therapy with Kristin including taking little bites of, and playing with yogurt, and a day of catch-up planned from being gone for the last 10 days...then things took a turn...

After several trips, the car was loaded up with all the necessary things for the day.  Lastly, and most importantly mom loaded up the dogs, and sweet little Lu.   She shut the passenger door and immediately heard the ping of the car alarm being set for her LOCKED car!!!  NO- IT CAN'T BE!  Lady Frieda must have put her paw on the door lock just perfectly.  Windows up all the way, phone and keys in car (no spare key available due to Blue eating it a while back) and no mommy!
Panic set in and I rushed to my neighbors, the Casias' to the South, and Aliza and David's to the North...both ended up coming out within minutes.  I stood next to my window with a large flagstone in hand gently trying to bust out my driver's side window.  Aliza calmly suggested that she call 911 and what a grand idea!  I could hear the firetruck within minutes and soon they arrived on Holly Street.   Four firemen surrounded the car with locksmith tools, and within moments they were in!  Baby was calm, dogs were a bit freaked out, and mommy was sooooo relieved.  Before i had a chance to get any digits for my single girlfriends, they were off to the next job.  Jumping Jack Flash!  Not quite the day I had planned..

Whoosh-Bam-Ahhhhh

Time to special order that extra spare key....

Good Night and Good Day tomorrow!

a little yogurt for a little lu! 

Truly and Tonya McCabe

Walk in the Light

Our trip to my parents house ended today.  I love the safe feeling of being at 'home' ...parents watching over you, all sleeping under the same roof, parents loving on your daughter and all their grandkids, home cooked meals, and so many memories...but as they say- all good things must come to an end (who are 'they' anyway?!).  Regardless, Lucia and I were excited to get home to my husband, her daddy, our dogs and our little house on Holly.

The airport didn't feel as smooth as it did on the way out..and mama, AKA me, almost had a meltdown.  I'm not one to get easily stressed or overwhelmed but then again, I haven't really had many reasons to be, but today it just seemed to add up.  Luggage weighed a whopping 5lbs over the limit, luggage was locked and the baggage guy made a fuss about it, rushing to security so I could start Lucia's feeding only to be stopped for while because they forgot to type 'infant' on my boarding pass...  Deep breaths, her feeding was only an hour late, lugging stroller, car seat, baby, oxygen and batteries, diaper bag, and some other schwag through the belt...and not to mention it was H-O-T in that Columbus airport.  I just had a rush of feelings-Lu was sleeping, but needed to eat, some of the people were nice and some just blah... my baby girl didn't look comfortable and she was in her car seat crowded by medical equipment..I just started thinking.. I hope this isn't the easiest its going to be for Lucia, and then I started thinking more and walking and deep breaths and thinking and walking...  I had about 30 minutes until take-off and decided that a glass of wine would be a good idea.  "Pinot Grigio on the fly please".  I sat down, feeling my eyes swell up with tears and then it happened..I looked at Little Lu.  She had woken up and was looking around with her big blue eyes that melt my soul.  Just when you think...you look at little Lu.  Thank you my little Lu-bird.  You swept in and picked me up once again!
The rest of the flight home wasn't bad and getting home to our family was great.  I started to tell Jase about my day and with that I started to get teary again.  It truly was not bad, not bad at all, many great moments, but we sometimes catch glimpses of what MAY be for our little girl and it hurts, we hurt for Lu.
About 5 minutes passed and our neighbors, Kelly and Karen came by with a little gift for Lucia.  I've lived next door to them since I bought the house in 1999 and they are a wonderful family-Karin, Kelly, and and their 2 boys, Emilio and Matteo.  Thank you neighbors for your very special gift and beautiful letter.  I needed a good cry and this did the trick- in a good way.
They gave Lucia a cd they made titled, Red Tail Chasing Hawks Songs for Lucia and here is part of their note, I hope you don't mind me sharing it... it's too beautiful to not.

Juliet, Jason and Lucia.....
The name Lucia means 'the light' and we have seen first hand how Lucia lights up a room and our hearts.  The Native Americans believe that all 'life' revolves around a universal sequence of rhythms and cycles-from the changing of the four season to the sun's rise at the beginning of each day to it's beautiful sunset marking day's end; and just as the sunlight warms and nurtures the earth, I have witnessed how Lucia's 'light' warms and brightens your world.  Juliet and Jason, your lives have changed and now revolve around little Lu just as the universe revolves around the sun.  
Please accept our gift of the native American music (music that reflects life and love at it's most basic level-nature's music).
.....
"Learn and Listen
Hear what you are missing
can you hear the whispers in the wind, a rain drop fall, the love in someones eyes or the love in a mother's tears."  The Raven
May you walk in the Light,
Always,
Karin, Kelly, Emilio & Mateo
Thank you Casias Family.  This is a perfect gift from your family to ours.  Thank you also for your generous donation to PKS Kids.  I know it was in God's plan to have us beside each other in the universe.
May we all walk in the Light.

Family and an upcoming... St. Lucia party!!

precious little lu-bird 

I usually like to blog after I put little lu down in her crib at night.  Since we've been away, 1 week, she has slept in bed with me and she loves to stay up late-like 1AM!  She doesn't fuss or need to be held but how can you go to sleep with a little Lu bird sitting pretty next to you?  I just want to look into her eyes, hold her hands, read her favorite book-squishy turtle and friends, and love and kiss on her...choosing the dog feels so good!  So, needless to say, blogging has not been happening much!  But we have a LOT to be thankful for and a very special upcoming party that I wanted to share.

Phillip and Anna had a beautiful wedding and Lucia got to meet so many friends and family in her pretty little fancy dress.   It was a beautiful wedding and weekend.  My brother's friend Andy, introduced us to a friend, and after talking with her we learned that is a therapist for a little girl who has PKS!  Craz-EE-this is more than a coincidence..  She could not disclose too much because of her work relationship, but the little girl is in a foster home, is 4 years old and can walk and even talk a bit!  I am trying to get more information on this little angel and will share more when we know more...

Now we are having some good ole family time at home, in New Philadelphia.  Still oxygen free during the day and have even gone a night without!  Although we have no plans of moving from Denver, this sure makes traveling to lower altitudes MUCH more appealing!   As soon as we start buying lottery tickets and win we will most definitely buy a private jet for little lu. 

Next Saturday, October 15th, our special friends are hosting a very, very, very special party in Lu's honor.  The St. Lucia White Party honoring Lucia Dawkins benefiting PKS Kids!  There are still some tickets available and it is going to be a wonderful night.  If you would like to join us, please please do.  The benefit is at an art gallery on Santa Fe Ave, in Denver (which by the way-Lucia's GI doctor and his wife own-and the girls did not know this until Dr. Rosensweig bought his tickets!!!!!!!-Craze-EEE again)!!!  Raffle tickets to all that attend, incredible silent auction items, food, friends and lots of fun all for a truly amazing organization, PKS Kids.  We are so grateful to our friends-they have put so much love and time into this event.  THANK YOU Elyse, Greta, Kim, Laura and Megan.  

If you would like to purchase tickets and/or learn more about the St. Lucia White (all white attire) please visit www.stluciaparty.myevent.com.  Lucia Light -white t-shirts will be on sale too :) ... Tickets sales may close this Thursday, October 6th.  

good night little lu sleeping pretty next to me, in my bed since i was a little girl.  I have thought about this moment of sharing my bed with my child and here it is...here you are...i must go cuddle up next to you now.  I love you lu and we love you daddy and doggies in Denver.   night night, sleep tight

Me, Lucia, and family-Joey, Kim, Jon and Courtney

first family formal affair! i think lu's hat might be a bit tight. 

one of my most favorite pics- my dad and little lu..

Little Lucy!

Little Lucy and her Dad at Sea World 

Once in a while you see something that convinces you that there are indeed angles watching over all of us.  A few nights ago, I came across this video http://www.youtube.com/watch?feature=player_embedded&v=2OATh00cuS4 of one of our favorite PKS friends named Lucy performing at her school's talent show.  After watching Lucy's performance, I'm almost certain that Lucy is one of those angels watching over her PKS friends.  Lucy was diagnosed with PKS as a baby and has since become a stunning young lady with a fantastic voice.  Each PKS kid will travel his or her own path and are gifted with a dramatic range in cognitive and physical abilities.  Almost every PKS parent we speak with mentions Lucy as an example of a young lady with fantastic abilities who is as likable as she is pretty.  While we have no expectations as to what Lucia will aspire to, we always have Lucy in the back of our minds.  If nothing else, I truly believe that Lucy sings and speaks for all of the little ones that can't.  What a gift!  We have watched this performance over and over again and it gets better every time.  Simon Cowell would be proud!

Fabulouso first flight!

Lucia's boyfriend in Italy sent her a post on facebook, I think this is why our trip is going so well :) If you have time for a beautiful Italian song...
 'Happy first flight Little Lu! This song is for you, wishing you can come to visit us soon!!! Giacomo and Samantha from Bologna, Italy..




Lucia was magnificanto on her first flight!!!  Pacifier in on the way up and down (so her ears were not affected), no crying,  no fussing, big eyes, sleepy eyes, a few smiles, and one stinky diaper...
Last night we had a mini reunion with friends from high school,  Caryn Harter Morgan, Raina Gilmore Huff, Kristi Spinell Braskett and all our kids- 8 girls and 1 boy kids in all.  It was so much fun to see everyone-had been over 5 years since some of us had reunited!

AND the best news is-Lucia LOVES the low altitude, high humidity Ohio air!  She was on 1/4 oxygen of what she usually is on at night and so far today she is oxygen-tube free and is holding steady at a great level!  SO IN LOVE WITH OUR OXYGEN FREE GIRL NAMED LU!

Lots of love from grammy and grampa in their cozy Ohio house...times are good..and its only day one!

Viva Nuevo Philadelphia!  Viva Italy someday...

Ciao!

Mini Reunion with long time, great friends and lots of new mini friends!
Thank Morgans for hosting!

This little light

this little light o mine

i'm gonna let her shine

this little light o mine

we're gonna let her shine

this little light o mine

God's gonna let her shine

let her shine, let her shine, let her shi-ine

Lucia is Latin for 'light'.  Lucia is truly our light and every time i hear that song, it brings a tear to my eye, and my heart beats for little lu, and i could listen to that song over and over and over again, every single day.  Lucia did shine this week.  Two very successful and touching events, so much support, love and light.  My cheeks hurt from smiling after each event- Thursday, the Stella and Dot and then today at Pura Vida Fitness Club.  Jason and I took a rooftop yoga class, overlooking the rocky mountains, under a cloudless and blue as blue can be sky.  Billy P, my favorite teacher, led a beautiful and always challenging class, and we were surrounded by friends and people that wanted to help Lu and her PKS friends shine their light.  Over $2,000 was raised today!!

Tomorrow we are off to Ohio and it will be Lucia's first plane trip-eeeeeeeee it will be nice to get this 'first' over with.  I'm nervous but every first can make you nervous...and on the other side of that gate will be my parents and family for a very special event.

 Thank you to all that came out this week to participate and donate and share YOUR light!  This little light of ours we're sure letting her shine.   Thank you so much!

Much love,
Jason and Jules, and a very special and lucky girl named lu-our shining light!

Juliet, Elyse, Traci, Kim, Lisa all around little lu. And wearing 'lucia-light' t-shirts.

P.S- The t-shirts are for sale for $25 and 100% of the proceeds go to PKS Kids.  Let me know if you're interested in a 'lucia-light' t-shirt.  They say light in different languages on the first two lines, www.pkskids.net on the third line.  Orange or black print in a most comfortable and thin 'burnout' style t. Girls and boys sizes available.

GIRLS!

GIRLS ROCK!  Lucia and I just got home from her party, Stella and Dot!  I can't begin to say how much fun it was and amazing to see all the girls that attended- THANK YOU so much to Kirsten Vali for our fun gifts, and organizing such a special party for Lucia and PKS. I loved visiting with friends I had not seen in a while, with friends of friends that I had not met,  and I LOVED watching the girls meet and interact with Lu!  During the party, I was talking to a friend a few feet from Lucia when her feeding ended and her g-button machine started beeping (her g-tube is attached to a little machine and we program it for the time and amount-it beeps when its finished).  I looked over,  about to go over and help, but there were at least five girls surrounding Lucia, working on getting it done.  My heart melted for not Lucia this time, but my friends, loving and helping Lu.  As Jason said in his first blog entry, 'little lu has already brought out the best in us"....  I'll never forget that special scene.

Thank you again friends for showing me how lucky I am.  NO DOUBT Lucia felt the love around her tonight!

This week we also had another treat!  Wednesday we got the 'go ahead' to give Lucia a bit of yogurt!  So Jason and I fed our little girl, with a silver spoon, and cheered and smiled and carefully spoon fed our Lu.  Although it was small portion, two tiny teaspoons, it filled us to the brim with pure joy!  However, Lucia showed signs of possible aspiration/reflux later that night, so her pulminologist Margarita,  advised us to wait a few days, try it again and see how it goes.  She may not be ready, or maybe she just go a touch of a 'cold' on the same day...

Thank you Elizabeth Sheppard Kent (so nice to see your name), Leah Kirk, Anna Sugarman, my mom, Becca Reichenberg and Ginny Kullman for your online jewelry purchases.  Thank you Erica Abrams Cleary, Denise Castillo Dellisola (how are you Denise?!) and Dawn Sierens for your generous donations to PKS Kids!

I LOVE ALL THE SPECIAL GIRLS IN OUR LIVES!  GIRLS GIRLS GIRLS!!!  SIMPLY THE BEST!  XOXOXOXO

Stella and Dot Party-some of the shoppers
Lu's mom, Elyse, Maryann,Amanda,Stacy,Lisa and the hostess, Kirsten Vali! 

Sunday list

Dress Rehearsal for Phillip's Rehearsal Dinner

Even when you aren't in school or working, Sunday is a day to plan and think about the week ahead, especially at night.  We have a lot to do this week- sooooooooooooooo many things to look forward to!  A lot of feelings too- excited, anxious, hopeful and blessed...

1) Print off United Oxygen form for Lucia's pediatrician to sign- BECAUSE LU IS FLYING ON A JET PLANE NEXT MONDAY!  My younger brother, Phillip,  is getting married on October 1st in Columbus, OH and we will be there will bells on! So very excited!  His fiance, Anna Heston, is fabulous,  and we can't wait to officially add her to our family!

2) Monday 9:00AM Get ready for our first mommy and me yoga class!!!

3) Think about and smile because...Not ONE but TWO fundraising events in Lu's honor for PKS KIDS this week! For Reals!!!  Whoa!! Yippee!!

4) Have a hip hip hooray appt with Dr. Laurel Benson, Lucia's ortho doc, on Tuesday.

5) Check phone to make sure we have not missed any calls regarding Lucia and permission to eat yogurt! We are waiting to hear if she has the green light to eat a little thick yogurt 1 time a day.

6) Pick out Lu's outfit for Thursday night Stella and Dot Jewelry Party. I think she'd like to wear a dress or tutu or both!

7) Smile and squeeze and hug Lu because I'm in love with a girl named Lu!

8) Pack for our big trip because Sunday,  we'll be busy at the Pura Vida Fitness Club PKS Impact Event!

9) Make new list of everything that we have forgotten to prepare for trip.

10) Show Raina, who will be house/dog sitting, how to watch our doggies when we're gone.. feedings, tucking them in at night etc...

11) Check off list, drink champagne with my husband to celebrate Lu and our lives with all the love around!

12) Lots of thank yous to come too...this week!

Thank you God for giving us this week ahead..we are so blessed.

Pura Vida

Pura Vida is Spanish for "Pure Life".  For the last 3 years, I have worked at Pura Vida Fitness Club and it truly lives up to its name.  I planned on going back to work August 1st, but with the birth of little Lu, I am not quite certain when I'll be going back..  However,  my work family understands and is now hosting an event in Lucia's honor to raise money for PKS Kids!!  Please join us next Sunday, September 25th!  The Club will be open to members and non-members for this fun event- bring friends, bring family, bring your groove on, or your zen, or just come as you are! Yoga-inside and outside, Zumba-inside and outside, Cocktails and Raffles!  Pura Vida is the most beautiful fitness club I have ever seen and I feel very lucky to be a part of such a great place.  As yoga instructor Billy P. likes to say "lighten up and have some fun".  I hope to see you there-and I promise it will be fun! Thank you J Madden, Keith Moore, Heather Bahlmann, Billy Potocnik, Jamie Vance, Natasha Vukicevic, Wendi Schneider, Anna Sugarman and everyone else involved for helping create this special event!  Details below or visit www.puravidaclub.com for more info.  

Thank you my Pure Life Family!!!

Sundaes

Sweetness ready for test!

When I was growing up, my older brothers were always the smart ones in the family.  They would get all A's and B's or just all A's (if they wanted to be boring :) ) and I would get A's, B's and almost always, one stinky C.

Friendly's restaurant in Ohio- sundaes, fries, chili hot dogs etc. -would offer kids a special treat when they brought in their good report card.  For the A/B students(my twin brothers)- a presentation of a monstrous Reese's Pieces Sundae- giant scoops of ice cream, topped with hot fudge and caramel, doused by handfuls of Reese's pieces and smothered with whipped cream.  For those with a C (me), presentation of a much smaller traditional sundae- 2 small scoops of vanilla ice cream, hot fudge, a little whipped cream, and a cherry on top.  But I was still excited about my lil treat, and hey, looking back,  it was a lot less calories!

So..... Lucia did not earn herself a Reese's Sundae today at the Swallow Test/Study but she may have just earned herself a cute traditional Beautiful sundae!  She still shows signs of not swallowing properly- it trickled into her lungs and up to her nasal passage BUT they said they have seen a lot worse.  I got the honor- it was so amazing- to feed her strawberry/banana yogurt, a few tiny spoonfuls, and also feed her a bottle for about 15 seconds.  Awww it was nice to feed my baby.  She was so excited too.

But she can't eat if it is going to affect her lungs so we'll take it slow.  Robin, the speech pathologist at RMHC, recommends yogurt one time a day to see how she does and keep her interested in oral eating!!!  There is a lot of radiation with every swallow study so in 3-6 months she'll have another.   Robin is going to talk to Lucia's pulminologist and GI doctor and someone will get back to us on a plan of action.

So, could it have been better? YES.  Could it have been worse?  Absolutely.  So we are just fine.  Good job little Lu.  Any little bit of sweetness, big or small, is a treat! And you could not be sweeter!

Strawberry/Banana Yogurt at Swallow Test!!!! So fun!

The Reese's Pieces Sundae-that is way too much!

A perfect sized sundae for me and Lu

Successful Slumber!

Sweet Smiley Lu at her first sleepover!

Lucia had a GREAT slumber party at her grandparents house on Saturday night!  Around 1:30PM on Saturday, we dropped off our little four and 1/2 month old baby girl and off Jason and I went to Keystone for our friends' wedding.  I hesitated to text or call the full 1.5 hours drive up, but when we arrived I couldn't resist anymore and sent a simple text- "feel free to send pics".  Within a minute I had some of the best Lu pics ever!!!  As you can see, Lu was having the time of her life!  It would have been quite tough to relax and enjoy ourselves if we were worrying...so how could we with these shots of our happy girl!

Happy/Gigglin?  Lucia!

Linda sent more texts and pictures throughout the night/next morning and I felt so good knowing she was in such loving and great hands.  And I meant slumber party when i said slumber!  This was the order in their bed:- their two toy poodles- Marnie and Tobey, (Bobbo) Mario, Lucia and (Nonni) Linda.  SOOOOO cute!  I am so lucky to have them in my life and now Lucia's- so lucky.

On Tuesday, Lucia has a big appointment,  a swallow test.  If her throat muscles/tone has strengthened and she swallows properly- we'll be able to feed her orally! No biggie if not Lu, we are just fine with any feeding method that treats you well!  However, it would be amazing and super fabulous and incredible and a HUGE blessing from God, and Lu-tastic if she's ready to 'pass' the test...   I never liked tests..so either way is OK lil.  

Thank you Nonni and Bobbo for a fun Saturday night, it could NOT have been more fun and special! love, Lu

Thank you Nonni and Bobbo for a fun Saturday night, it could NOT have been more fun and special AND worryfree!  Love, Jules and Jason

Thank you neighbors- Matteo, Mello and Aliza and David for watching us too, Woof love, Frieda and Blue

Thank you Trish and Blaine for including us on your most special day! It was beautiful and a blast!!  Love,  Juliet and Jason

This week I'm going to share an upcoming amazing event that will be held on September 25th for PKS Kids!  Thank you Pura Vida!

First Night away... Ski Tip Lodge, Keystone
Trish Lovewell and Blaine Versaw Wedding

Pebbles

Sometimes you just get sad but most of the time you don't.  Jason had a little rough patch for a moment early tonight.  We had Lucia's Physical Therapy today along with an evaluation on what our goals are for Lucia. Our initial goals have been met, which is great- turning her head both ways, making eye contact, gaining strength- wonderful!  Now we have the next 6 month goals and what we hope is - her eyes continue to develop, that she can learn to roll over (she rolled over for about a week and then stopped), that she will reach for objects that she sees, and that she smiles more and giggles! It's a bit difficult to talk about goals/milestones but you have to start somewhere and she is, right now, doing pretty darn great!

After PT, Lu had a follow up renal US/ultrasound.  Her left kidney was swollen at birth and the US showed less swelling so we were happy about that- another US in 6 months. There is something sad, touching, and cute all at once, to see your little child get an ultrasound or test- a little sweet baby on a big big hospital bed.  Lu just sucking away at her pacifier, happy as a clam, getting little tests.

When we get sad here and there, we don't really say a whole lot, we just shed a few tears, hug, kiss on Lu, and then smile and squeeze her. Tonight Jason just said 'it just doesn't seem fair that she has to have all this on her"- referring to oxygen and g-tube, and then the rest of the days activities.  It wasn't a big day but sometimes it just puts a big of a weight on your heart.  And then, you look at little Lu......ahhhh so Lu!

The night ended with a fun babysitting gathering at my brothers house.  We watched Joey and Kim's kids and it was really nice!  A bit of coloring, Charley and the boys playing with Lu, Chinese order in dinner, ice cream, bath time and bedtime-fun and easy- really fun!  Uncle Andy even came by to hang out.

Lu is soundly asleep in her crib, husband sleeping beside me and our dogs at the foot of the bed.  Happy Family-just a few lil pebbles along the road..but they are pink and orange pebbles..so they are still sweet and bright.

Cousin's on the Couch!

Cute as a button!

After a nice, long holiday weekend Lu had a doctors appointment to get her button/feeding tube changed for the first time since she had it 'installed, put in place...put in'.   She is supposed to have it changed every 3 months.   We have come a LONG way since she got her button on May 31st.  I never thought I could watch the full 'changing of the button' but it was no-thing, easy breezy!   I also realize how far we've come after spending the night at Jason's mom's house and explaining "Little Lu's Instructions".  Jason and I are going up to the mountains for our friends wedding on Saturday night,  so Lu will be having her first sleepover without me, at Nannie's, AKA Jason's moms, Linda and Mario's house.   Linda has been eagerly asking to watch Lucia so we can have some time together - dinners, daytime, nighttime... so when we received the invitation, I still hesitated a bit to ask, but she couldn't have offered faster to take care of Lu overnight.   The truth is, I just haven't had the desire to be without the little lady...but the longer you wait the harder it will be, they say....

So, last night we had a dress rehearsal.  Jason and I loaded up the car with her oxygen, food, stands, a few other various devices, Little Lu, our two dogs, and off we went for a BBQ and sleepover in Cherry Hills.   Lu and I stayed, dogs and dad went home.

Lucia doesn't seem too complicated 3 months into her medical routine, but we've come a long way..I must say!  As I was explaining all the instructions/details to Linda (which went on for a very long time), I would look up every so often to see if it was too much and ask, "is this OK? are you sure?" Linda never once seemed overwhelmed or worried, in fact, she couldn't have been more enthusiastic, excited, and focused!

The night went well- Lu and I slept in the spare bedroom until 8AM and when we awoke-Linda was pacing outside the hall just bursting to greet her granddaughter- so cute!  I know she'll be in great hands this Saturday.

New button on little Lu and her first sleepover!  Our girl is growing up!

Thank you Linda and Mario for being so comforting and excited to watch Lu!  Its only 85 hours and 30 minutes until we drop her off ...eeeee...I'm missing her already..

Love,
Lu and her new button on her belly, Lu and her cute button nose and well- she's just cute as a button (whatever that really means) she's very cute!

Laid back Lucia showing off her new button!

Little Friends!

Lucia has her own friends!  One special friend lives in Minneapolis, Elizabeth "Lizzie" Gold, who was born just 8 days before Lucia on April 18th and diagnosed at 4 days old with PKS.   Lizzie sent little Lu a care package this week- a pink tie-dyed onesie with a sparkly "L" on it, along with some other very cute girlie things.  We know Lizzie and Lu will have a face-to-face friendship one day, hopefully soon!  Lucia also has a boyfriend in Bologna, Italy named Giacomo Karol Gagliardi!  Giacomo was born 7 weeks after Lucia, on June 7th, and was diagnosed with PKS 3 weeks after birth.  We have just gotten word from his mom, Samantha, that something special is arriving for Lu from Giacomo.  Lu can't wait to meet you too, Giacomo, and give you a big kiss!  At just 4 months old, our little Lu has a best friend and a boyfriend! Thank you L & G!  Although we do not live too close and our babies are all under 5 months old, we are sooo happy to have your hands to hold on this journey together!

Handsome Giacomo Karol

Happy Elizabeth "Lizzie"

Eyes!  We went to the eye doctors on Thursday and he told us that everything looks normal, structurally,  and that Lucia will probably just take her own time developing her full vision.  We shared our concerns about her vision- doesn't notice anything peripheral, not always focused, eyes not always working together, sometimes twitchy movement, very small pupils, and he said there is nothing to do- he thinks that she'll get there- it just will take a bit longer.  Her low muscle tone affects her little blue eyes too.  Dr Arbuckle said "I'm a do-er.  I like to do things if I can to make it better but Lucia does not need anything done at this point".  So we were happy about that- you take your own time sweet baby girl.  

Looking forward to church tomorrow with Little Lu...her friends are in our prayers always- near and far. 

Thank you Ryan Smith, Rae Sandler, Brent Hedstrom and Luke Beatty for your generous contributions to PKS Kids!!  PKS Kids does sooo much research and awareness and without PKS Kids we would not know Lizzie or Giacomo!

xo