Happy First Lu-Bird-Day Lucia!

Lucia Elizabeth Dawkins

Born April 26th, 2011 at 3:26PM

7lbs 13oz, 20 inches

Words can't describe our first year with you, Lucia, our Little Lu, Lubird, our Shining Light!

Thank you all for making this year so so so very special

As her boyfriend, Giacomo, in Italy says

"Happy Lu-Bird-Day"

we hope you enjoy the video

with much love, 

the Dawkins family

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Trip out east

In less than her 1 wee year of life, Lucia has experienced so much and been on many adventures!  Our trip east to Philadelphia, The Children's Hospital of Philadelphia/CHOP, was eventful, enlightening, uneventful, and nice, all at the same time.   On Friday, Lucia had her fourth swallow study and it was extremely eventful!  A swallow study is a live x-ray snapshot of her swallowing food or a bottle.  A speech pathologist and doctor 'study'/observe to be sure it goes down the right 'pipe'.  Boy has little Lu come a long way!  She did not aspirate during the study, and therefore we are allowed to 'proceed with caution', but nevertheless PROCEED with giving her a bottle orally.  So we have been watching our baby drink a bit of a bottle during each feeding for the past 4 days and its wonderful!  Hallelujah, Hallelujah!!!  She is improving so Jason and I feel strongly that someday she will not always have her little button, feeding tube, yay...LU!

The other specialty appointments were the enlightening and somewhat uneventful part.  I think Jason and I expected someone to say-she seems mild, or she seems moderate or she seems severe..but they didn't really do that.  In so many words we think they pointed us to moderate and typical PKS child, not great and not horrible. I had so many thoughts going through my head every time a specialist examined her...I could feel myself being nervous for Lu, feel me trying to transfer my energy and strength to her, to help her be her 'aware and strong self' as she can be, feel myself wanting her to show them her best, my heart raced and I would forget to breath and blink.   But then I would remember that I'm the nervous one NOT her! She is totally and completely relaxed and herself.. as we all should be.  Its not a test, its an observation of a little girl with a special condition.  And that little girl is someone that just wants to be herself, look where she wants and is able, hear what she can hear, move when she wants to move, and be loved by and love those around her.  So, the genetics team spent time with Lucia and asked Jason and me questions...by the end they had shared that PKS is a very tough diagnosis to receive..all the kids are different, they may surprise you...love them, continue to teach them as they don't stop learning, and be pleasantly surprised if they are able to do certain things.  Somewhat vague and uneventful but good.  At the end of the appointments we were happy we went.  They are the specialists, and the only PKS specialists out there, so any feedback is good...and if we have questions or her doctors have questions, their team "is a phone call away".  They were very nice and told us to keep doing what we are doing for Lu.  I learned again that Lucia could give two hoots about the prognosis...she is a girl named Lu that is here for the present moment and here to spread her light in her simple, beautiful way!  Love you so much bird.

Geneticist Dr. Ian Krantz

The rest of the weekend was so much FUN!  Trip down memory lane through Lehigh University, Jason's college days,  quality time and stay at the Killea's home in New Jersey, beer garden with the Curley's, dinner in NYC with Jennifer Leach English and her little family, and back home again.
The highlight of Jason's trip was a moment with Lucia on his lap watching his friend Brian play ball with his 3 year old son, Bowan.  The playtime struck a cord with Lu and she giggled several times while watching the boys horse around.  Daddy's little girl...so sweet.

Brian and Jen Killea

Lu and Bowan Killea

Gavin Curly and Lu

Lori Curley and 10 day old Winston

family bier garten shot

waiting for ferry to NYC

precious Araceli English holding Lucia

There is no doubt that Lucia left her mark all over.  At CHOP they photographed her with our permission, she traveled by plane, we rode a train, ferry, drove a car, took a cab, and sprinkled her light amongst friends and they showered us with their light- SO MUCH!
Thank you Brian, Jennifer and Bowan Killea for a great weekend, thank you Curley's for taking the time, even with a 10 day old new baby, Winston.  Thank you Jenn Leach, Jeff and sweet Araceli for the night out and the sweet gifts!  Thank you Dr. Ian Krantz and team for researching and studying PKS to someday find a cure or a way to stop the progression.  Thank you also for some early birthday presents for Lu- Ana Redmond for Lucia's cute outfit above, Cayla for the thoughtful books and visit, Zapata's for the musical toys, Lizzie and Lucy for the personalized crafty gifts, and PKS donation.  We'd like to say good-bye to furry friend, our next door neighbors fuzzy dog, Zena- 15 years old.  She had the fullest and prettiest coat!  Thank you to my brother Andy for watching our dogs while we were away.  
We would also love to introduce the newest family member, born to Jason's sister Ashley and her husband Lee Hunt- Taylor Ashlynn Hunt- a baby girl born on Saturday night!!!

Taylor Ashlynn Hunt 4-21-12 6.5lbs

Lucia now has another cousin to grow up beside.  And our Little Lu will be 1 year old in just 2 days!  We are having a birthday celebration on Saturday..if you are reading this and would like to come..please do!
Tweet Tweet...Lu is so Sweet!  Now Lu, get ready for a tasty birthday Treat!

Flying Colors, Beauty and Grace!

Here is a picture of little Lu almost 1 full year ago, May 6th, 2011.  I took this picture a couple days before her PKS diagnosis.  I texted this picture to some close family and friends with these words:
"Lu and friends are ready for anything that lies ahead! And will face the world with flying colors, beauty and grace!  xoxo"

And here is little Lu now, April 18th, 2012.  Look how small the yellow doll has gotten :)   We are in Philadelphia, going to CHOP tomorrow for our genetics clinic.  We are truly so excited to be here.  The words above still stand true!

Lu and friends are ready for anything that lies ahead! And will face the world with flying colors, beauty and grace!  xoxo"

We love you Little Lu, Lubird, Lucia, our shining LIGHT!
Amen!

Leaving HER mark and a BIG Deal!

Of all the doctors and therapists we've met for Lu, we have yet to meet one that is familiar with Pallister-Killian Syndrome.  We actually have only met one doctor that has even heard of it.  However, that is about to change!  On Wednesday we are taking a trip to Philadelphia, to CHOP, The Children's Hospital of Philadelphia.  There is a geneticist doctor there that specializes and studies PKS, Dr. Ian Krantz.  Ian's met several of the PKS kids and works to study and help in any way he can.  We had talked about going earlier but Lu seems to be in good hands in Denver and we wanted to see how she developed a bit before jumping to get evaluation.  So, just 8 days shy of being 1 year old, this Wednesday we are making the trip.  CHOP conducts a rare genetics clinic every month.  She'll see a geneticist, Dr. Krantz, a physical therapist, development, feeding specialist, and ENT doctor, including an audiologist.  After meeting with Lucia we hope to have a better sense of Lu's condition, how her future may look, and most importantly what we can do to give her, her best life. He and some of his team have seen other kids like Lu so if anyone can, he would be the one to give us more insight.  We understand that no one can really say what her future looks like but if he can guide us a bit to help her more, great.   They'll give us feedback, recommendations, and hopefully reassure us that we have and are doing the right things for Lu.    Honestly, I'm excited but really scared too.  Will they say she seems severe with PKS? , that they don't anticipate certain things for Lucia? ..maybe, and maybe not, we'll just hope and pray for the best.  Lucia is who SHE is and that is our wonderful, special little angel, nothing can change that.
I told Jason's mom last week that we weren't sure we were going to go right now...what would it really do for Lu and is it the right time, am I ready to hear what they might say about Lu.  etc.., and she said something that I loved.  Even if you don't find anything new out, Lucia is giving herself to their team, to help in PKS, she is leaving HER mark to maybe help other kids down the road.  I love that and have only been excited to go since.  Thanks Linda!  So, we'll be at CHOP on Thursday and Friday and then off to visit some great friends in New Jersey and NYC!

Something else remarkable happened this week.  Last night Lucia responded to a toy.  The electric toy piano, given to Lu by Becky Hemphill, won Lucia over!  I presented the toy to Lu, as I had done before, but this time was different, she looked at it, smiled, giggled and tried to whack the keys,  She responded this way for a few minutes and we could not believe our eyes!   Jason and I practically jumped on her lap and doubled over with joy.  It was so incredible, magical to see our child connect like that.  Jason recorded the last minute and was only able to catch one smile but its still really cool!  As Emily Gold said once.  Special child + little things=BIG deal!   It was a BIG, BIG, AMAZINGLY WONDERFUL DEAL!

Thank you Nathi for the delicious family lunch on Saturday and the fun Lucia clothes and accessories, including a ba-ling ba-ling gold pacifier.  Thank you Amanda and Scott Moss for purchasing two Lucia T-shirts!  Thank you again Becky for the amazing piano gift!  Thank you Lu for making our week with your piano skills and for being our BEST baby! So in love...

at Nathi's place- Cousin Marco and Lubird

cousins and kimmy!

And Happy Two Year Anniversary to my husband tomorrow.  I can't imagine my life with anyone else.  You are an amazing husband and the best father Lucia could ever ask for.

Spring has Sprung!

Pretty lubird in Easter outfit from Noni-looks like a 'peep' candy!

Tulips are blooming, Easter arrived, and Lucia's 1st Birthday is in a few weeks...Spring has Sprung!  I love seeing the flowers bloom, trees bud, grass grow green,  and just the smell of spring in the air.  I have always loved tulips-who doesn't- but after the "Welcome to Holland" story I am reminded, even more, of the very special journey we are on with our Lu.   I see several colorful tulips, standing tall and together, and think of ALL the special kids and their families...standing together, side by side, looking beautiful and happy and that makes me smile.  God created so many beautiful things.... including flowers and people,  and as intended each are to grow, blossom, bloom, thrive!    We pray that our Lu will continue to bloom.  Bloom Lucia Bloom!!!  Everyone and Everything- Bloom!
We do understand the beauty of living beings, each to their own, that is what makes us so special! So love and nourish our little Lu we will, to the fullest, and we'll continue to watch her bloom to her fullest every single day...we are already almost to 365 days...holy cow.
I love this video my mom forwarded to me...the beauty of blooms!

Each flower is filmed for two days and photos are collated within 7 minutes to get this effect.  It's REALLY cool and beautiful.  From just a wee seed to this...

Thank you for your thoughts and prayers for our little Lubird to bloom..they mean so much to us! Thank you to Jason's family for a beautiful Easter Celebration today.  Thank you Jake Powell for buying two Lucia Light T shirts.  Thank you Lucy and Lizzie Bobilya for the BEST tights I've ever seen and cute decor.  Thank you Becky for Lucia's Easter basket and toy electric piano! Thank you Heather & Lily Bahlmann and Sara, Carmela and Lincoln Fox for a fun Friday Night! Happy 1st Birthdays to Teagan Wilson and this Wednesday to Garces twins-Javier and Sebastian!  Thank you Phillip and Anna for the cute card.  Thank you Grammy and Grampa and Noni and Babo for the fun baskets and gifts.  Thank you Rosy for the MANY beautiful presents from the Philippines. Thank you Amy Barrett for your toy donations for the Anchor Center.  Safe travels Lala and Aa aa this week- we'll miss you! Thank you husband for a very special family Easter- our Lucia's first, and for lifting me up and showing me the light when I may slide off course. I love you Jason and Lubird and Frieda and Blue..I love our special little blossoming family.

Lu's first pony ride...not super thrilled

little lu and daddy sittin' in the grass

Becky Hemphill and birdie

Sweet Rosy (takes care of Jason's grandparents) 

token Easter Bunny shot- I agree Amy B- kind of a weird bunny 

Mario, cousin Kayla, Linda and Lu (Babo and Noni)

Jason's Family

 We hope you too had a beautiful Easter, full of love and light.  Thank you God and Jesus for this most special day.

Fun at camp

Adam's Camp has come and gone and initially I thought that they may teach Lu how to sit unassisted or how to reach and grab for toys but then I realized that she will do it when she is ready.  As my friend Laura texted me, "She is strong spirited just like her mommy.  If she wants to she will!"   I can't argue with that- I suppose I can be strong willed and spirited...    I also realized that therapies, and camps, and things of that nature are not always about achieving a 'milestone'.  They can just be about making new friends, learning something about yourself-such as Lucia loving the electric keyboard, or just having fun!  Although we continue to work on her sitting,  it was a great experience, I am glad that we did it, every little bit helps AND it was FUN!    The last day, the therapists put together an evaluation, summary of Lucia's Adam's Camp week and the slides are below. I love it.

Thank you Adams Camp for this opportunity, we look forward to going back to camp again!

This post is dedicated to two very special furry friends.   Last week, Mario said good-bye to his almost 16 year old, miniature poodle, Toby.  And Ken Flemming said goodbye to his sweet girl, a black lab, called Chicken.  We know how special dogs are and how truly special they were to you.

Thank you Lori Allman Williams for buying a Lucia Light shirt! Thank you dogs for being 'man's best friend'.  And Lucia, way to be strong, and use your endurance at Adam's Camp- we are SOOOOOOOOOO proud of you and love you SOOOOOOOOOOOOOOOOOO much!