Imagine

Lucia finally meets her best friend, Lizzie and her Italian boyfriend, Giacomo!

Imagine going on a trip where you are going to meet over 150 people that you have never met- people that have come from all over the world to spend just 3 days together.  People that come from every background, ethnicity, age, and walk of life.   Imagine seeing these people for the first time and being greeted with a hug. A hug that is long and sincere and loving, like a long lost friend. Imagine coming face to face with these strangers and immediately having a connection, an ease at conversation, no ice to break, no awkward silent moments. Imagine over forty severely disabled children, most in wheelchairs, nonverbal, unable to feed, bath, toilet or even hold their heads up themselves. Imagine introducing your disabled child to these people you have just met, and they immediately want to get close and love your child, unconditionally.  Imagine these people wanting to know about your lives, your child's life, the good and the bad, without any sugar coating.  Imagine these children surrounded by ordinary parents, ordinary siblings, in an ordinary hotel setting. Imagine love, light, and happiness to just be.  To just be with each other, to feel safe, and proud and happy. That moment happened over and over again in the middle of a hotel lobby, in a dull conference hotel room, in hallways or rooms of a hotel...it was not the hotel it was the people, it was the kids.  Going to the PKS Kids Face2Face Conference this past weekend was all of those things and more.   We loved on other children with PKS, Lucia was overly loved, we talked, we learned, we laughed, and we were lifted up and given an outlook on how our little Lubird may grow.

Before we arrived in DC  Jason and I were full of anticipation, hope, anxiety and mostly we were bursting full of excitement to meet our new 'PKS Family'.    With about 300 PKS cases ever reported, we were going to have a chance to meet about 40 of these kids affected by PKS.  The PKS Kids there aged from little Sofia at 8 months old to sweet Lauren at 28 years old.  As with any syndrome, disease, or condition, having Pallister-Killian Syndrome does not define Lucia.  She is just a little girl figuring out her likes and dislikes, discovering the world as she grows.  However, being at this conference did show us that most of these kids are very, very, very similar.  The sweet way they tightly grasp their hands, the cute leg lift so one foot gently rests on the other knee, the amazing way they contort their faces, contort their lips- blowing bubbles, sucking the thin upper lip under the full lower lip,  their crazy hair pattern, their long, very long winded vowel song..aaaaaaaaaa, awwwwww, and most importantly, their pleasant, angelic demeanor that exudes off each and every one of them.
We heard stories of not being able to control seizures, of countless sleepless nights, surgeries, hospital stays, therapy suggestions, equipment suggestions, research studies, where the medical field stands with their funding and research, motivational speaker, and on and on and on....needless to say it was too short!  We went to the conference curious how our Lucia is doing and how she might look in the future and we think we have a pretty good idea of that.  She shares many similarities with the majority of the children we met.  With the support of this crew, we know we can do this!  We can reach out to so many and know that they truly do understand, that they may be able to guide us, even guide our doctors.  They are a phone call away...and in two years we'll have another PKS conference and we already can't wait. Our little Lucia will be 3 years old by then!!!  Today, after our weekend, I feel good.  I feel so lucky that we do have this group, so lucky that our Lucia is healthy right now.   The road ahead is always unknown, but knowing we have so many to stand by our side, to pray for our Lu, to pray for each other, to visit on trips, to call on a rough day, to sing with on a good day...it means the world.  Lubird is our world.  We have learned so much from her already.  We do hope, of course, that one day there will be a cure or a way to lessen the effects of Pallister-Killian Syndrome, but right now, if every family had one child, with some special needs, NO doubt that the world would be a better more beautiful place, imagine that!  And right here, right now, we feel so lucky to have this sweet bird, singing her aaaaawwwwws, and making her faces, and having us hold her and love her day in and day out.  This past weekend we experienced an endless circle of hope and unimaginable love, all due to a common bond of children with a syndrome by the name of Pallister-Killian.
It was a trip like no other and like Jason's good friend and volunteer photographer, Sean Touhey, at the conference one night said.  'I'm so glad that I was able to be here, it opened up a whole new world to me".  This is now our world and right now it seems like a beautiful place to be.

PKS Board members families

Daisy & Caleb-flew from singapore!

Amber Holmes-mom to Shelby and Lu

Matthew

Giacomo

Andrew and his sisters

Samantha- Giacomo's mom-from Bologna, Italy

just chillin

Lubird and a nurse helper, Fatima!

Yara and mom Sandra from Holland

Simon and Lu

our bird

Jake!

Luke!

Lizzie, Gizzie

sweet young love

Sunglass girls- Lu and Shelby

about half the group of PKS Kids

Sweet patty cake

New friends Isabella and Lu finally meet! with awesome Brooke 

more kids!

and more!

sweet

on way home...tired lubird

Happy Fathers Day

one proud daddy

Happy Fathers Day to all the Daddy's in the world!  I love you dad, my pa, my daddy Butch!   And Happy Fathers Day to my husband, the father of our child.  Lucia is the luckiest girl in the world to have you as her daddy.

from Lu to her daddy

dear daddy,


you've shown me the depths of your love since the day i was born
you've held my hands through all the sunshine and storms
each day i feel your love grow for me, your baby girl
i feel it so strongly, you are my shelter, i am your pearl
i was born with some challenges, maybe not what you planned
but you've shown me that doesn't matter, you'd carry me through water to let me experience ALL of God's land
thank you for helping me be the best i can be
but just know that  i am the happiest in your arms, you and me
i now have a little different hand than i did before
thanks to you i can better use it, each day a little more
and because my little hand won't really be back
i wanted you to remember it, my handprint, on a special shiny plaque


i love you so much daddy, 
your baby girl, lu

the perfect gift

Before Lucia was born, or maybe just a couple weeks after, a very good friend of mine wanted to get us a top of the line, mac daddy, baby food processor.  Something to keep our new baby healthy,with fresh food, and of course every baby would eat so this seemed like an amazing gift...at the time.  However, things change and that gift did not work for Lucia's needs.  Instead of that gift, my dear friend and her family gave Jason and I a gift that was truly perfect.  Perfect in so many ways.  Perfect for us, perfect for Lucia and perfectly emotional, exciting and generously perfect.  Last summer we received a card about this perfect gift and it went a bit like this:

Dear Juliet and Jason, 
I am so happy to inform you of the contribution my family has made to PKS Kids.  Each year myself, Todd(brother),  and Noel (step-mom), decide where/who a certain amount of money goes with a foundation that my dad and Noel started.  In the past,  we have divided it up.  This year we all decided that we want all the money to go to PKS Kids.  After a couple emails with Gretchen Peters, (PKS kids founder), she confirmed that we could donate the money to specifically 'sponsor' the Dawkins Family to go to the 2012 PKS conference.  If there is money left over it will be donated directly to PKS Kids.  My family has read Lucia's blog and I've updated them of her progress since her birth and we thought it would be nice for you guys to meet some of the other families with PKS Kids.  As a friend I want to be there for you 100% but when I have not walked in your shoes or experienced what you guys are going through it is hard.  I can only imagine these families being able to help you in ways I can not.  You guys have been so adamantly committed to Lucia since her diagnosis...(more very nice words-thanks court)...and you have taught me what is really important in life. 


...I will continue to keep Lucia in my prayers! I can not wait to come see you guys again!  


Miss you tons, 
Love, Courtney, Michael, Graycen, Paige and oh yea, baby bump or actually 'kidney bean' too.. 

When we were given this gift I was shocked and I cried.  It wasn't a long drawn out sobbing cry, it was a -i can't believe how nice , and mixed bundle of feelings little cry!  I cried because it was so generous and what she wrote was so beautiful.  And I cried because I tried to fight the obvious that we are on a different path, and in different shoes than most of our friends around us.   I knew, without a doubt, that I wanted to attend that conference but meeting all the kids, all the families, when we were just getting used to our baby, our baby girls diagnosis, it meant it would, 100% happen.  I was excited, but I think I cried because it made it real.

Receiving that gift seems soooo long ago, and now the gift is about to come true!  Next Thursday, Jason, Lucia and I are flying to Washington DC for the 2012 PKS Kids Face 2 Face Conference.  Forty families of PKS kids, speakers, medical professionals and more will be there from Friday night to Monday morning.

It feels like we have been waiting for this weekend for years!  We will finally meet, face-to-face, friends that I have talked to, texted, emailed, facebooked, exchanged gifts with...relationships that have been going on for over a year and we have never met.  Friends that I can't imagine my life without them in it.  Emily Gold, you are that friend. Samantha Carletti, Brooke Turner, Gretchen Peters, Amber Holmes, and more...

When we meet, NEXT WEEK, I'll meet those friends that are on our path, walking in similar shoes.  I love you Courtney!  And I love you Emily, Sam, Brooke, Gretchen, Amber and more..and can't wait to meet you and your kids!  

Thank you Thesing and Schreiner Family- The Thesing Foundation for gifting our family this perfect gift.  PKS Face to Face here we come, and Jason and I could not be more excited!  Lubird get ready,  we are truly going on a trip of a lifetime! A trip that replaced a food processor...who knew?!  Thank you Lubird for being you.  Thank you God for friends like Courtney,  and those we are about to meet!

Happy Anniversary to my mom and dad! And by the way, Courtney and Michaels 'kidney bean' turned out to be a beautiful baby boy, Witt Schreiner, born on March 19th, 2012.

courtney was one of my first friends in Denver! here we are in 1999
hadley cox, tate foster, me, courtney thesing, courtney woodward and jeremy may-now married,
katy glade, gretchen terrill-now married to hadley, and gerri brown!

Wow..the memories from that picture!

We are also so excited to spend Thursday evening with the Flemmings, Gerri Brown and maybe a few other friends that live in DC.  Weeeeeeeeeeeeeeeeeeeeeeeeee  Whoop Whoop!

Four is better than three!

Lu has a new hand! Well, same hand but different - four fingers, and that is better than three!  She actually has five fingers, but two are still together...this is a lot of explaining for such a little hand!  You catch the drift... Lu had her cast removed after 4 weeks and the outcome looks good.  Dr. Laurel Benson was pleased with the results and Lu immediately grasped her hands together, ahhhh together at last!
That beautiful birdie cast only weighed 7 oz, seemed much heavier,  and our Lu weighed in at 20lbs.  We thought she would weigh more b/c she's been drinking so much, but maybe lifting that cast gave her a good workout.
Swimming, baths, grasping, rolling again, holding hands, maybe even a pink manicure are all in her near future.  Now we can celebrate summer, summer, summertime!
We are also counting down the days to next Thursday, June 21st.  Jason, Lubird and I will be going on a very, very special trip we have been planning for over a year, planning since Lucia's diagnosis of PKS.  More to come...

Oh, what's this text I just received, Lu's daddy is cutting his workday short to take his cast-free bird to the pool!  What a sweet daddy!!!!! Summer here we come! Giddy up Lu- let's dust off your swimming tube!

bye bye castie!

daddy and his bird!

it's kinda cold in here!! or is she rockin out to Van Halen?

Thank you Lucy and Lizzie Bobilya for another award winning present- a cute jumper that has Lubird embroidered on it!  And Happy Birthday to my sister-in-law, Kim Hicks, who was also my maid of honor at our wedding 2 years ago.  I can't imagine my life without Kimmy-  the ups, the downs, the smiles and the frowns..she's been around for it all and I'm soooooooooo grateful for this sis.   Thank you Kimmy for being one of the best friends, and aunts to my Lu anyone would ever wish for!  We love you!   I want Davey to be in Little Lady Lucia blog..so here he is!  We love you and miss you Rabbit, O-Beast, our Davey.

kim and her late dog, sweet sweet rabbit, Davey

And Happy birthday to another sister in law, Ashley Dawkins Hunt! We are so thankful to have you in our lives, as a sister and friend and as Lucia's Godmother. Love you Ash. And last but not least, Happy Make a Wish Party to our 3 year old friend, Kingsley Larsen!  Kingsley was the 500th special child to be granted a wish of a hot tub last Saturday.  A crane delivered the tub, firefighters filled it up, Brothers BBQ catered and it was a party for a family so deserving!

Kingsley and Lu- so sweet

an orange high chair

my girls-frieda and lubird

I registered.  I registered for a cute crib bumper, mobiles, bibs, bottles, burp cloths, sleep sacks, funny stuffed things, big toys, small toys, a few other baby 'necessities', and I registered for a high chair.  The high chair was a tough one.  Do you go with the traditional wooden high chair, the bright colored modern and washable one, or the kind that your kids can grow with...high chair to booster seat to a chair?  Such big decisions to be made when you are expecting your first child.  Well, after much contemplation, I went with the bright colored modern one.  Easy to fold up when not in use, a neutral but fun bright orange color with white and silver base and priced pretty well....    I love her high chair.  I love seeing the bright orange baby seat in the corner of our grey and taupe colored family room. I love how it screams, 'we have a baby!!!'.  I love the memories of picking it out, receiving it from my two best friends, Kim and Laura, at my baby shower and I just love it.   There is one hitch,  it doesn't get used.  Little Lu has sat in it a few times with modifications added... towels, little pillows, even the knitted peas... but it just doesn't quite work.  Even when we have her situated in that cute high chair,  her feet hang off the edge, she starts to slide, and as cute as she looks...its just not right.
We have adapted with other baby seats.  A table top high chair, using the Bob stroller in a reclined position, putting books under her feet, using a 'hugg-a-baby' cushion.  As a baby, many of those things worked well enough and some still do, but she is growing up and the time has come to adapt.  
Today we had Little Lu fitted for a 'stander'.  A stander to help her bare weight, to help her hips and spine grow and form as they should.  The first piece of medical 'equipment' has been ordered for our little girl. A $2000 ticket, paid by insurance, with about a 4 month approval period...and it will be ours.
'Kid carts, standers, ankle, foot orthotics/AFO's' are next, and so on...  It's not a big deal really, our little Lu just needs a bit more help, it's just different.  I've taken the bright orange high chair in and out of the family room more times than I can count.  I haven't gotten sad, she just wasn't quite ready for it.  And when I could put her in it, no big deal that her feet didn't touch, no big deal that she was slouched a little... She was in a regular, what we registered and planned for, cute bright orange high chair!  But I was wrong.  It is a big deal that her feet don't touch, and that her spine is slouched.  The cute orange high chair does not work for our bird.  She is a special Lubird and we are not going to just settle for the norm in everything.  Today, as I watched Lu get fitted for a stander, I smiled inside and out.  She cried and didn't enjoy the new position, and that did not make me smile.  But, I smiled because the stander would have been on her baby registry.  We are going to get what she needs and gratefully we are able to get it.  The twenty or so firm pads, the straps, buckles, supine, prone positions, foot pads, all offered on the 48 lb stander are what our Lubird needs.  The time has come to adapt and today was the beginning of a new baby shower... With these gifts being a bit heavier, a bit bigger and bulkier, but with this, our bird will be on her way to fly her own special flight!
A flight that has some bumps and maybe even a few nose dives, but a flight that will securely hold her as she needs and show her all the beautiful sights yet to see.  Hold on Little Lu...with our hands held together we are are going to see it all, and we're going to see it brighter than ANY orange colored high chair could have ever, ever, EVER offered!

Thank you Katie Shean Zapata for visiting us on Monday. You have been so incredibly thoughtful with special gifts and messages for our family since Little Lu was born.  Katie and husband David had their first child, a baby girl, just 3 days before Lucia was born-little rosebud, Annarose! And Happy Birthday to uncle Adam, Katie Garces and Lu's special boyfriend, Happy 1st Birthday Giacomo!!! xoxoxo

getting all strapped in

this feels weird!

sitting up soooo well in her bumbo but not too happy
happy birthday Giacomo!

ps. the stander will have pretty pink pads :)

Beautiful bottle drinking baby!

Bib on and seriously hungry face ready for bottle!

"So our New Years Resolutions/Goals are to teach Lucia how to eat and maybe even drink."  I posted that resolution on January 7th, 2012.  And now here we are June 3rd, 2012 and drink she does!  Our Little Lu drinks, and drinks, and cries for more!  And lately, she has turned into a ravenous little bird that LOVES to drink her pediasure milk!!!  And when this little bird drinks, she knows what she wants.  If we water her formula down too much, she pushes the bottle out of her mouth with her tongue - she KNOWS it's not as tastey!!  Praise GOD, Lucia drinks AND has preferences AND a hungry attitude to go with it- and we LOOOOOOOOVE it!!!   Our Little Lu has turned into and acts like a baby- we've created a hungry, bottle drinking baby! Go Lu, Go Lu, its da best, Go Lu.

Growing Lubird swinging at Turtle Park!

A situation so simple has brought so much joy and made me so proud.  Almost every weekday, I walk to a little kids park by our house, Turtle Park.  I walk my baby and my dogs and we join the other kids as they run and play and swing and act like kids.  Lu needs support in the swing, and she may look a bit different with her oxygen, marked floppyness/muscle tone, and now cast, but when she cries, a hungry cry,  I hold my Lubird in my arms, grab the bottle and feed her, just how the other babies feed!  A situation that did not exist, just a short time ago, simply feeding my baby in my arms.  Ahhhhhhhh... Our bird is a beautiful bottle drinking baby.  We're still taking it slow, not all by mouth, but Thank You God for letting this be.  And please don't let this feeding ever go on hold again.

Lu and aunt Ashley and bottle-whimpering for more

Grammy and Lu and bottle
and drinking on the seaplane below

Noni and Lu burping after bottle

Today we celebrated a special birthday, Lu's cousin Charley turned 2 years old today!  Charley is so sweet with Lu, as is her cousin, almost 2 years old, Kayla Hunt.  In a few years time they'll be taking care of Lu on their own- that's how good they are :)  Happy Birthday Charley Hicks!  We love your gentle and sweet care to Lucia and those around you, your pure little girl personality, not to mention your high sense of fashion!

Cousins in a bath-Charley and Lu

Charley, now that is a perfect outfit!

Weeeeeee -Grampa and Lu at Turtle Park

Happy Birthday to our good friend Elyse today too!  AND we welcome two beautiful babies to this world.  Our friends, Karen and Eric Tscharner gave birth to a baby girl, Charley Mae, on May 31st, and Scott and Amanda Moss gave birth just an hour ago, on June 3rd, Brook Katherine!  Gotta love all those girls, girls, girls-right guys?!!

Thank you Erin Flynn Hakansson for purchasing a Lucia Light T-shirt!  Thank you Isabella, Brook and Shaun Turner for Lu's personalized bib. Katie Shean Zapata- we're so excited to see you tomorrow! And way to go Lubird for completing a New Year's Resolution- just half way through the year!!!!  And only 8 days more for your caaaaaaaaaaaaaaaaaaaast! Yaaaaaaaay!!!