Rare Disease Day, 29 Feb 2012

Rare means coming or occurring far apart in time; unusual; uncommon, not typical, extremely uncommon...but with today's social media chances are you know many that are touched by a rare disease.  Since Lucia has been diagnosed with her rare syndrome we have met so many others that are affected by a rare disease... Today, February 29th (the last day of february every year)) marks the fifth year for Rare Disease Day, which is being acknowledged all around the world.

The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. 

You never know when or why you might be affected by a rare disease...but if and when you are, this day helps you feel less rare, less alone..we feel pretty good being a part of this day.  Thank you for being a part of our Rare Disease Day.  Thank you Lucia for being our rare but shining bright light today and every day! Thank you God for ALL the special people around us.  We pray that Lucia and her friends are helped through the rare and difficult disease of Pallister-Killian Syndrome as they grow and that others affected by rare diseases feel a little less alone and less pain with their rare situation.  

Love, Juliet, Jason and Lucia Dawkins

10 Months Old

Pretty in pink little Lu turned TEN months on Sunday, February 26th.  Now she is as old as she was growing in my belly!  I loved being pregnant with her...We didn't know she was a she until she arrived but Lucia didn't give me morning sickness, or even make me very tired or swollen, she was perfect.  Thanks Lubird!

Tomorrow we have our evaluation for the Anchor Center to be sure it will be a good fit.  Even at the wee age of 10 months little lu has an interview for school :) ...   well, really its her eyes that they want to be sure are a good fit but either way we're looking forward to it.  Lucia also found her knees this week...stretching and pulling her knees up to her chest and feeling them with her precious hands..so sweet-so exciting to see her discover and move her little body around.

knee!  

This Wednesday is also a special and new holiday for us...  Rare Disease Day is February 29th.  http://www.rarediseaseday.org/   Since having Lu we now know many others affected by a rare disease, pks and more....some that don't even have a diagnosis!   A new baby, a new holiday and with that comes new friends....can't really complain about that!  

a little slice of heaven

Smooth travels to a little slice of heaven with your husband and child is the perfect combination for a wonderful vacation.  Lubird's first international getaway was paradise.  No distractions, no agenda, just pure bliss.

Highlights of little Lu's trip included:  swimming a lot in the pool, taking a water taxi, visiting the pier where mommy and daddy got married , wearing sunglasses and no one knowing if i was awake or asleep, dancing with daddy at night to live music, swimming in the ocean, feeling the sand between my toes, lounging under the beach cabana, pool cabana and anywhere a lubird could fit to lounge, looking at the beautiful palm trees, flowers,  and bright blue skies, having the hotel staff ask 'how is Lucia today?' every day, getting wheeled down the beach in my stroller beside the ocean, not having to EVER wear oxygen (because its sea level), and being with my mommy and daddy all day and all night...

me and my dad-guess we're going swimmin!

floating around in the pool

hola

weeeeeeeeee

lounging and catching some rays

happy

water taxi

daddy and his little girl

reeling in a big fish on my invisible pole, while sitting on a big fish

happy bikini breakfast

more lounging

me and my mom

morning stretch

our paradise

Seeing all the things that made our little Lu happy made this vacation one of the best of our lives...and she's only just a wee little lubird...

this is what life is all about.  

Viva la Mexico!

little lu relaxing before her big trip!

35 mini diapers, 3 wee bathing suits, 3 passports, 1 pair of tiny pink polka dot sunglasses, 2 beach hats, 2 pool floaties, 1 pair of sandals, some medical paraphernalia, 2 ecstatic parents, and 1 little Lubird are packed and ready for our red eye flight to Mexico.  4 days of sun, sand and fun!  Ceiba Del Mar (where we were married almost 2 years ago)  HERE WE COME!!!  

Lu was also practicing a little yoga this week

Thank you for so many Lucia Light t-shirt purchases this week- Marvin Fete, Maria Tuschall, Megan Gilles-bought 5!, and Summer and Zach Larson (Kingsley looks awesome btw).  Thanks Grammy for my valentine and neck pillow for my flight and Aunt Katy for my beautiful card- and the handsome man of the house for the sweet card and beautiful flowers on Tuesday.  Until we return next Wednesday..Adios!

Julieta, Jasones y Luciarita

Spice of Life

roses are red

lu's eyes are blue

she's our little birdie

and we love you, Cupid Lu! 

happy valentines lubird!

On Friday night we checked out Lucia's new little school, the Anchor Center, and as expected, it is a very special place.  A simple yet brightly lit hallway leads to small classrooms, some therapy rooms, a special outdoor playground and more.  They have a little sensory light box in the 'light room' and we can't wait for little Lu to check it out..hopefully we will be enrolled in March and will visit the center 2x a week for 1.5 hours each time.  To see our little girl light up and get 'tickled' in certain situations..sometimes unexpectedly, rocks our world.  One of our favorite places to watch Lu is one of her favorite places.  Her diaper changing table sits beside a bright window and looks onto our neighbors big yard.  Every morning when we change her she immediately is drawn to the light as she turns her head, looks out with her blue eyes and lifts up her little legs for her morning stretch.  It's just perfect.  Perhaps a smile or some talking or just a curious look around...Lu starts most of her days happy and we do our best to follow her lead!  Hopefully with the help of the Anchor Center and the amazing staff we'll be able to help her find more of those special places in her life!
Saturday night we had the Hammond family over for dinner.  Caroline, West, Christopher age 7 with PKS, and his little sister Carly age 5.  Unfortunately, little Christopher has his nights and days mixed up so he mostly slept soundly but we were able to have some quality time with his parents and sister.  Little Chris has been through so much, so much...I can't even explain all that boy and his family have endured, but no doubt he is a fighter.
One thing that I keep thinking about since Saturday is something Chris' mom said.  Christopher is on a g tube and has a bit of a 'set-up' with his feeds, he is also on oxygen, in a special wheelchair and of course has a special look about him, as special needs kids and people do...  Caroline said she doesn't take him out too much because he could get very, very sick if he catches even a little cold and it also makes people uncomfortable.  Why is it that other people are uncomfortable?  I agree with her and it's true, when there is something 'different' in a typical situation, it can rattle the scene.  Special needs people could care less how people feel about them-they are perfectly happy being just who they are.  Shouldn't it be the person that is 'different/handicapped/dependent on others for care...' be the one that is uncomfortable? But it's not.   Special people might blurt out something different or even inappropriate, or they may look different, and eat different,  but who cares, isn't different the spice of life?  Handicapped people help bring their special spice of life to every situation in which they are present.  They do not judge anyone.  They do not brag about their possessions.  They do not pretend to be anyone but the pure and innocent person that they are and they do it in their own unique way.  Made me sad to think about..they are just angels among us....beautiful little cupids and angels!
We loved spending time with you and your family Christopher, if you are still on your awake night schedule we'll adjust our schedules sometime so we can ALL hang out!  And thank you for all the fun gifts!
Happy first valentines day Lu, your daddy and I could not love you more!  Lucia wants to send a valentines to some special boys in her life. Giacomo and Shaw (at least they don't live in the same country :O )
Thank you Doug Hastert for your nice donation to PKS Kids,  Thank you Stacy Fete, Katie Polce, Becky Hamphill, Jake Wieland and Tannan Morris for your Lucia t-shirt purchases.  Thank you neighbors for the great books and highchair.  Thank you Tallie and Henry for the valentines.  Happy Valentines Day- a Holiday just for Love!!!
AND, I just got off the phone with Lu's cardiologist, Dr. Jane Nydam and she said Lu's heart looks GREAT- we don't have to go back for a YEAR- what a great valentines present-a good heart report!

xoxoxoxoxoxoxoxoxoxoxoo

Jules, Jason, Little Lu, Frieda and Blue

Hear Ye! Hear Ye!

here i am in my first big snow outting.   its cold and i want my paci back, not to mention i look like a lavender marshmellow! 

hi everyone, little lu here.  I just wanted to let you know that i passed my hearing test last week!!!!!  I don't always react to noises so my mommy and daddy weren't sure how i'd do.  I do jump when our doggies bark and when my mommy or daddy talks sometimes but i'm not too interested in noises at this very moment.  its a lot to turn my head and all.  anyway, i passed the test and they'll continue to check my little ears as i grow to be sure they are still good.  many of my friends in the pks world wear hearing aids- actually, my friend lizzie is getting some neon purple aides tomorrow-that'll be cool.  lizzie, can't wait to hear what the boys think.
in other news, my friend shelby holmes in illinois passed her swallow study!  her mommy was soooooo excited for her to pass..she's been eating through a tube for the past year or so.  we are so happy for you shelbs!  ill share some food with you someday..i just need some more time.

shelby holmes - 3 years old

then there is little sarah paton in australia.  she is so cute and sweet and she just found out that she will need to have surgery so she can try to walk someday.  she just went through some tough times dealing with those awful seizures so this was not good news.  it makes our parents so sad what we have to go through but we'll be ok, it's just hard for them.

sarah paton-age 6

on friday night my mommy and daddy and auntie lala and uncle adam are going to a fun fundraiser at my soon to be new school, - some chocolate and wine event at the anchor center.  they want to check it out before i go, and they seem to really like that chocolate and wine stuff.

one more thing.  I made a new friend this week from mobile, alabama.  her name is isabella turner and she's so cute.  she is 15 months old- she can push and jump with her legs but her trunk is not so strong so she's still working on all that sitting business like me and a few other things.. patience mom and dad patience..

the turner family!

thanks aunt anna and uncle philpot for my fun valentines package and thanks sunshine green for all the cute clothes.  oh and tallie barrett- i can't wait to use that water vest in mexico in a couple weeks.   and shaw richter, how are you?

tweet tweet
love, little lu