A moment to remember

Lucia and my dad, her grampa

It's been a really good week and Tuesday was an especially great day.   Many times, a good day can be measured by a smile from Lu.  Look into my eyes little Lu and show me your sweet smile, that melts our hearts, and its a good day...make it two or more big smiles and perhaps a giggle and its a great day.   On Tuesday my parents came over for a good part of the day to visit.  I have been blessed to have such amazing parents and this little blog is an ode' to my pa.  My dad, my pa, a grampa to my lubird.  My dad is gentle, wise, generous, funny, creative, smart and on and on and on..  He is one of the kindest souls I know.  If you have had a chance to spend time with my dad, Butch, you know what I mean.
I have very tangly hair, it easily tangles, and it's very time consuming and difficult to untangle- still to this day..  Growing up, I remember when my dad would sometimes see my messy tangles and motion me to come over and sit on his lap, and he would gently and thoroughly comb through my hair until every tangle was gone.  At first the tangles hurt a bit but by the end it was such a safe, secure, and soft feeling and was a father daughter moment I'll always remember..
This Tuesday, I witnessed a grandfather granddaughter moment that I'll always remember. My dad leaned over beside Lucia and starting talking to her about how it was time to rub her back- (he is the world's best back rubber to his little grandkids).  He was talking and rubbing her head and running his fingers through her fine hair, looking deep into her eyes, and her into his.  She was staring back, and feeling her grampa's touch and she started smiling.  Lucia smiled and smiled and then giggled, and giggled again, then she started talking, and talking and smiling more..it had to have gone on for a few, maybe even five minutes..and it was one the MOST beautiful few minutes I have ever seen.  I watched and smiled, and shed some happy, happy tears and I smiled and watched and smiled and watched as two of my favorite people in the world bonded so beautifully.  It was a moment I will never forget.  My dad, my pa, the grampa to my bird.  I could not ask for a better dad, and now I see how lucky my child is and how lucky SHE FEELS! Thank you dad for being the dad you are to me and the grampa you are to my Lu.  You touch our lives in more ways than you can ever imagine.   Someday I know you'll untangle her little hair for her too.   I love you Pa.

part of the special moment- Lubird and her grampa who likes to call her Louie :)

Thank you Uncle Phil, Aunt Helen and cousins Celesta, Nora and Leah for an amazing, most delicious Christmas care package!  Thank you Aunt Courtney and Uncle Jon for Lu's pretty hoodie and baby legs.  Happy Birthday Aimee Beatty and HAPPY BIRTHDAY to my sweet nephew, Hudson- 6 YEARS OLD!  And Maria LePugh Pugia- we can't wait to see you!
Thank you Grammy and Grampa again for being here for the holidays and loving on our sweet Lubird.

My dad with his other granddaughter, sweet Charley

Dad giving Lu a backrub and his sidekick, Henry, the PUG!

Christmas

silent night in church

Gifts, traveling, baking, planning, decorating, special family and friends for the most special day of the year.  Christmas comes and goes and every year is different, but a baby's first Christmas is one a parent will always remember.  Santa is reborn, holiday outfits, a new stocking, more lights and gifts, parents turn into children again and the Christmas spirit is rekindled in a different way.  Our new little one, her first Christmas, just one day shy of being 8 months old on Christmas Day.
I have always looked forward to the Christmas eve service, singing the traditional carols, and Silent Night..my favorite..and from the picture above, one of Lucia's favorites too.  Jason and I see our little girl in many different lights all the time.  Some days she is alert, some days not so much.  Some days she will give us several smiles and be engaged and active, other days..not so much.  We had actually had a bit of a rough week..Lucia was not being as connected and smiley as others and sometimes..it just brings us down.  But Silent Night..Holy Night..Lucia was there, really there, looking around, smiling, beaming, looking with both eyes at the lights, looking with her big blue eyes all around during the service and songs and it made our Christmas..our little light was enjoying all the lights around her and our hearts were glowing bright.   We had a beautiful Christmas Eve.

Christmas day..many generous gifts...many magical moments with family that we'll never forget..    One year ago, today..rubbing my belly, knowing that our lives would never be the same again.  And little did we know, how much our lives would change...how we would be given a precious little baby to love more than we could ever, ever imagine.  We are so in love with our gift named Lu.  Thank you to our families for the beautiful Christmas celebrations.  Thank you baby Jesus for being born!  Thank you God for giving Lucia the strength to enjoy the Christmas Eve services, and the special moments with family on Christmas day.  Thank you for so many things.  Our baby, no doubt, enjoyed her baby's first Christmas, and that is something we'll never forget.
Peace and love,

Jules, Jason, Lucia, Frieda and Blue

happy lubird on christmas day

christmas lu legs

It's beginning to look a lot like Christmas!

our Christmas tree

Grammy and Grampa arrived TODAY from Ohio for Christmas, with their pug, Henry, en tote too-Rejoice!  Over a month of phone calls back and forth to the pharmacy, insurance companies, and pediatricians, Lucia was finally approved TODAY for an important, (yet very expensive for insurance), RSV bacteria fighting shot- Hallelujah!  Having skipped a birth announcement, not on purpose, we busted out our Christmas cards, and they are in the mail TODAY, with Lucia looking pretty as a princess!  Lucia also had a much needed dirty diaper TODAY, which put her in a good mood!  There is snow on the ground,  our cactus, Henry is adorned by ornaments and lights, including a very special painted wooden cross from Lucia's friend, Shaw Richter.  Little Lu also received an amazingly beautiful sterling silver Saint Lucia necklace from the O'Donnells-THANK YOU.  And mommy did some online Christmas shopping for the first time this season.  It is beginning to look and feel a lot like Christmas.

necklace from Bonnie and Dick O'Donnell

engraved with Lu's name!

Wooden cross from Shaw Richter

We just took our nightly bath and Lucia gave her mommy and daddy at least three beautiful smiles...ahhhh...the light is shining bright tonight.    Jesus is the reason for the season, and we hope and pray that our light will shine bright this week and throughout the New Year.  
Thank you Richters for the cross, thank you O'Donnells for the very special necklace engraved with Lucia's name.  Thank you sister Courtney for purchasing two Lucia Light t-shirts and thank you so many for your beautiful Holiday Cards!
Five Days until Christmas...Have a blessed, merry and bright Christmas.
Love,
The Dawkins Family

Happy St. Lucia's Day!

Santa Lucia 

Lucia's Italian boyfriend, Giacomo,  (Giacomo was born with PKS this June, we met via the PKS kids website) sent a message to Lucia last night via Facebook- it said,
"A few hours to St. Lucia's day!  We are thinking about the most beautiful Lucia in the world! How is she? A lot of hugs!"  
Thank you Giacomo and your mom, Samantha!  Lucia is doing really well...and now, thanks to you,  we have another day to celebrate our special daughter- TODAY!!!
I looked up the meaning of St. Lucia Day and here is what I found:

"For Italians, the day begins with a bowl of cuccia—wheat berries simmered with milk and sugar.

It’s St. Lucia Day, December 13th, and the traditions that come with it are many.

St. Lucia was an early Christian martyr of Syracuse, on the island of Sicily. After her wealthy mother recovered from an illness, Lucia and her mother distributed their riches to the poor in thankfulness, and at night to avoid the Roman cops.

Lucia’s non-Christian fiance did not take kindly to this redistribution of wealth, and he denounced her to the pagan Roman authorities, who tortured her.

Miraculously, when neither boiling oil nor burning pitch had the power to hurt her, she was blinded and slain with a sword. Her martyrdom [allegedly on Dec. 13, 304 A.D.] is recorded in ancient sources and in an inscription found in Syracuse.

Because Lucia could not be burned by fire, she is celebrated as a saint of light."

What an amazing story and woman St. Lucia was...Jason and I loved the name, Lucia, after honeymooning on the island of St. Lucia, but it is turning out to be perfect in so many ways.  

Happy St. Lucia's Day Giacomo and your family!  Thank you for sharing this special day with us, we too wish we were together to celebrate!  Thank you Katie Shean for purchasing TWO Lucia Light T shirts!  Thank you Shirley Miller for your kind words on Sunday, means so much.  Thank you Wendi for doing a family photoshoot on Sunday- we hope to get our Christmas cards done soon!  And "Mama"in Indiana, Lucia sends her light to you with the loss of your husband, Ed.   We hope to meet you someday!   

Now, its time to fix a delicious and special breakfast feast to celebrate, St. Lucia's Day!  Oh, and we'll make a little extra so we can hand out some treats to others today too!  

Looks whos feeling strong without oxygen :)  

So goes life..

Getting so strong!

I finished my third and final day of clinicals today, which was training in a nursing home. Four school days left to go and I'll be through with the CNA course- YAY!  Thank you Summer Larsen for telling me about this program.  I have enjoyed it but I miss being the stay at home mommy that I've been since Lu was born!
The nursing home was bitter and sweet. I've always enjoying working with seniors, they can be so cute, and wise, and interesting, and feisty, and loving, ...but so many were so affected by dementia and specifically Alzheimer's and it was quite sad at times.  Life goes by so fast..I thought of my grandparents, my family, my friends, myself, even Lucia as an old lady.  Little Lu.. a baby in diapers, dependent on others, innocent to the surroundings of the world, and many of those there were exactly the same way..in diapers, dependent on others, innocent to the surroundings of the world...so goes life.  Some were just there for 'rehab' so not there to reside...just to get better and then go home... A glance down a hall and you would see residents in wheelchairs or walkers,  CNA's (nursing assistants), RN's (nurses), possibly a doctor, cleaning staff and many THERAPISTS!  The therapists worked these residents- teaching them different tasks-some to stroke victims, teaching them how to speak, walk, eat, comb their hair, put on their shoes..anything and everything they needed.  Therapists are awesome.  After my day at the nursing home, Lucia had her her therapies-Occupational on Wednesday, working on eating and some sitting, and Physical Therapy today, working on more sitting, rolling, tummy time and tracking...and I LOVE what they do for Lu.  I look forward to her therapies every time.  They may make her upset b/c the 'work' is not easy, but they are helping her and they are helping us help her.  They are guiding her to do things on her own so she can get strong enough to sit unassisted, to swallow without aspirating, to move and be curious enough to want to move...she works SO hard and by the end I'm tired too!  We have requested Speech to start soon too.  The more the better.
The one therapy that is not hard for Lucia is her new swimming therapy.  She is totally independent and free to move her limbs as she wants!  Sometimes she moves quite a bit and sometimes not so much but LuBird loves her bath and I love taking it with her.   It's a BirdBath - and it's SO FUN!

Thank YOU Therapists everywhere for helping people- big and small- from 1 day old to 100 years old.  Thank you Coco and Reese for coming over last night to hang out and telling us about your therapies and experiences to help amazing Reese, who has Glutaric Acidemia Type 1 or GA1.  Your email and advice and encouragement have been just what I needed, so many times.  Thank you neighbors for letting us always borrow your thermometer, when we think Lu feels a bit too warm AND for your delicious Christmas cookies!  Thank you Callie Chapman and Marissa O'Malley for purchasing Lucia Light tee's for PKS Kids and your kind messages-made my day!  Thank you Deb Mooers for your donation to PKS Kids!
Congratulations to Ken and Britney for the arrival of their new son, Kendall Jack IV! And Henry Redmond, Lucia sends a kiss your way and to your parents too!

Free to move about the cabin as you wish little Lu!

CNA's in training... 6AM shot at the nursing home on Tuesday

A Big DA DA for Big DA DDY!!!

Lu has said her first word!!! It is "Da da"!!!!!  She'll just sit around and say "da, da, da..." and it's aw aw AWESOME!  She hasn't quite figured out the meaning of DaDa but it sure is making her Daddy proud regardless...those details can be figured out later..  We know we are blessed by so many things that Lu is doing.  Having Lucia's Private Duty Nurses has made us realize this even more.   Talking to them and learning just a little about some of her other patients that they care for..we feel so fortunate.  The reason one nurse was assigned to us was that she "was looking for more work AND she wanted to care for a healthier baby, an easier baby" and they thought of LU!  Lu is the healthier, easier baby that they thought of!   We know that she is amazing and not hard, but just hearing that made us realize how lucky we really are.  The nurses don't share much, of course, but I have learned that their other patients, pediatric patients, may have trachs, or are vent dependant, or may even be classified as 'hospice' (expected to have less than 6 months to live)....

We will continue to listen to the beautiful song of DADADADA and perhaps sometime a ma, ma, ma may just flow out of her cute little lips too!  We realize that babies are a gift and everything about them is beautiful and magical and we are in love with our girl named Lu! Sweet Tweets Da Da!

Cousins! Sweet lil Charley giving Lu her paci, and Hudson watching over...

Not just business travel !

Jason (could he look happier?) and Kennedy Garcia!

Jason travels with his job sometimes, and through his travels he has been uplifted by the many new friends he has met along the way.  This June, Jason was on a work trip in Minneapolis and had the chance to meet Lizzie Gold, daughter of Emily and David Gold, born April 19th, 2011 and diagnosed with PKS.  Since then, we have become good friends with the Golds-learning and walking this journey together via texts, calls, pictures and messages.  This week, Jason was in Houston for work and through PKS Kids he met and contacted the Garcia Family.  Speshelle and Luis Garcia have a PKS daughter, Kennedy who is 4 years old, a younger sister Zoe and a little brother on the way..  Jason got in touch with the Garcia's on Monday and without a hesitation they met Jason for dinner on Tuesday night.  I anxiously awaited Jason's phone call to hear all about about it.   Jason called and was so excited to share how amazing they were.  He went told me about their parents, their daughters-little Zoe helps take care of Kennedy, their love, the PKS 'family' they have met..and on and on, he could not have had more fun!  Kennedy came home with oxygen and ate through a button for about a year, she recently got cute pink hearing aides, she can drink from her sippy cup and a straw, sit in her bumbo, crawl around a bit, stand assisted, and she has been trying to mimic her little sisters moves.  They told Jason they cried for 3 days after her diagnosis and never looked back.  Luis said, "Our lives aren't normal, but they're awesome!"  We have learned so much already from Lu, from parents with special needs, from doctors, from everyone actually (I think I'm a better listener than I used to be) and we learn so much from PKS Kids Families.  Business travel is not just business travel anymore...its a chance to possibly meet another PKS special child and their family and laugh, love and learn...

Speshelle, Zoe, Luis and Kennedy Garcia

Jessica on Sunday, Kennedy on Tuesday, home to Lucia on Wednesday...its been an action packed week!  Lucia and I have been busy too..we have used a new swimming device two times since receiving it on Monday. WaterWayBabies- a floatation device that keeps her head above water while allowing her limbs to move freely to help her get stronger!  The Golds told us about it and so far its so great for Lu!

Thank you Nani and Babo for Lucia's new therapy toy.  Thank you Powells for the generous donation to PKS Kids, the cutest outfit for Lu and very nice card- so great to hear from you!!!  I can't wait to put her in that outfit!  Thank you Maria LePugh for Lucia's very gorgeous and sweet blanket-so thoughtful and so soft- the dogs of course tried to cuddle up to it too.  Thank you Garcia family for sharing your family.  Karen, our prayers are with you and your parents.

Lubird testing out her new water toy- very focused, finding it very interesting!

Jessica Border

On our way to meet the Border family

Today, Sunday was a day we had been anticipating, meeting another child with Pallister-Killian Syndrome, Jessica Border.  Jessica, who just celebrated her 18th birthday, was born to her parents when they were in their mid 20's in 1992.  Jason and I were anxious, and excited and a bit nervous about meeting them so we were glad the day had arrived.  One characteristic of PKS is that it is a "mosaic syndrome", not affecting every single chromosome throughout the body, therefore every case is somewhat different but we obviously still share a unique, rare bond.  Jessica has been through so much, over 80 surgeries, before she even turned 10.  No one deserves to go through that, especially a child, but she is a fighter and a very sweet little girl.  Jessica goes to school, she loves music and band class, she loves watching cartoons and eating spaghetti.  She can give herself a sippy cup, sit up, and move around.  As Dr. Bellis said "She is just a little human, that needs to be loved" and loved she is.  Her parents, her brother and his girlfriend, and her aunt were all there and their love was completely transparent.  They answered any questions we had, asked us questions-we found out that Jess and Lu were both born at the same hospital!, they smiled and laughed while sharing silly and sweet stories of their precious girl, and they shared stories of some of the trying times too.  Her dad talked about having a different set of expectations.  He told us how exciting it is as a parent to watch your child sit up for the first time, but when your child does it for the first time at age 5,  the joy is indescribable.  Their love for our little Lu was also obvious.  Her family took turns holding Lu, and remembering their Jess as a baby...we took pictures, we held Jessica's hands and felt her sweet soft skin and looked into her beautiful blue eyes,  and we just took time to get to know each other.  Jessica is sweet and innocent and pure.  It was so nice to meet them, and although Jason and I try not to think too much about the future, I'm glad we have the Borders as our friends.  As I took the picture of Lucia in Jessica's lap, I had a moment where I pictured them holding hands, skipping in heaven together... Thank you Borders for sharing your little angel with us today. 

Jessica and Lu

Jessica's awesome sweet brother, Nick and Lu

  Thank you Hunts for hosting a wonderful Thanksgiving on Thursday, thank you Mario for a beautiful, special birthday celebration for Linda on Saturday! Thank you Laurie Demetrio for purchasing a Lucia Light Tee!  Our prayers are also with Ed and Barbara in Indiana this week and Kingsley for a speedy recovery.  Thank you again Borders for sharing your sweet Jessica with us. We pray that Jessica has a healthy and happy 18th year and many more ahead. 

   

Many Reasons

Happy Lubird!

Wednesday, November 23rd.  The night before Lucia's first Thanksgiving, the day of my mom's birthday, and so many reasons to be thankful!  I started a CNA (Certified Nursing Assistant) course this week and in just 3 weeks I'll have my certification and be able to better take care of Lucia, and with her condition, the state will also pay me a bit to take care of her with this certification- pretty cool.  The class has 10 other students- including 2 other moms with special needs kids, 2 Canadians, 1 Russian, 1 Kenyan, 2 Puerto Rican's..so needless to say it's a very diverse group of people-all coming together for the beginning of nursing and so far its been great!
Lu has some special people looking after her while mommy is in class.  Monday-her nani- Jason's mom, Linda.  Linda came over on Monday and got to see Lu have her therapy sessions and she was so pleased!  Her physical therapist even sent me a text on Monday 'Lucia did so well today, it was almost as if she wanted to show off for her grandma!' !  Thank you Linda for being such as amazing grandma to Lucia..it means so much to us and at just about 7 months old its obvious that Lucia loves you so!
On Tuesday, Lucia is taken care of by her special auntie Kimmy and sweet cousin Charley.  Thank you Kimmy and Charley- I love knowing that Lucia will have two looking after her on Tuesday- at just 15 months, Charley takes care of Lucia like a little mommy...its sooo sweet.
And Wednesday- Friday, Lucia has a Private Duty Nurse, Angela, that we found through a highly recommended company.  Angela is very kind and just after 2 days is very loving towards Lucia.  I spent quite a bit of time getting to know her and felt like she was a great fit.   And as a nurse she has the qualifications that together give us the ease of feeling that our little angel is in good hands.
Lucia qualifies for Medicaid as her secondary insurance, so with that we have found out about many inclusions-CNA course, in home therapies, Private Duty Nursing, and medical bills that may not be covered by our insurance.  We feel so fortunate to know about all of these things...they don't make it easy for you to find out..but then again, its not easy to qualify..we are thankful to live in America to have access to so many helpful things for our daughter.
Thank you Summer Larson for helping us with the process' that I mentioned above.  Our thoughts and prayers are with your special son, Kingsley, as you all celebrate Thanksgiving at the Children's Hospital for Kingsley's surgery.  Love you guys.
Thank you Jennifer, Jeff and Araceli for another thoughtful and unique gift for Lucia-where do you find all these wonderful gifts?!  Can't wait for our girls to meet someday!  Thank you Lucy and Lizzie for your fun musical card!  Thank you Michael Richter and Leslie O'Donnell for purchasing Lucia Light T-shirts! Happy Birthday Mom!  Thank you therapists for helping Lucia with your love and professionalism!  Thank you Cheryl Rosenthal for the VERY special book called You Are Special,  that I'll have to share on the blog at some point- its great!  Thank you God for giving us our sweet baby Lucia and so many reasons to be thankful this Thanksgiving!   We love you Lubird and tomorrow we are going to give you a couple baby spoonfuls of sweet potatoes...we'll have to wait on turkey and cranberry salad...

Happy Thanksgiving!  With much love and thanks,

The Dawkins

Tummy exercise with her awesome PT, Rebecca

Working on Sitting!

Lucia and her new friend and nurse, Angela

Get Closer

The day Lucia was diagnosed with PKS the geneticist said something to us that we'll never forget.  Something so simple yet so beautiful and true and unfortunately so easily forgotten in this world.  Dr. Bellis looked at us and Lucia as we were about to leave and said "she's just a little human that needs to be loved."  Religion, politics, race, background, or even species for that matter- everyone and everything just wants to be loved, right?!   I saw this video today on a PKS kids facebook post and it touched me so much.

here is the description of the video:

Pro Infirmis, a Swiss organization that helps people with disabilities, conducted an experiment.  They dressed up a disabled man, Fabian, in a cuddly bear costume and dropped him in the middle of a city square to give out hugs.  People jumped at the chance to hug this adorable giant bear, but would they have jumped at the chance to hug Fabian if he had not been in his disguise?  Probably not.  Pro Infirmis wants this to change.

In the video’s description on YouTube, Pro Informis writes, “There are only a few people who don’t have empathy with disabled people.  Nevertheless, the passenger seat in the public bus next to Fabian often stays empty.  Handicapped people are a regular part of our society.  So, get closer.”

Maybe this hit home because we don't know how handicapped our Lu will be and how she'll be accepted or maybe it hit me because I too have been that person that hasn't 'gotten closer' and I regret it and am ashamed.  Whatever the reason, I think this is one of the most influential videos I have ever seen...we're ALL just humans and like Dr. Bellis said, "that need to be loved".  Jason and I are going to do our best to get closer, for many reasons, and who needs a reason when a simple act of kindness can brighten someones day, week or life-maybe even including our own.  Get Closer!  

Thank you Tate for giving Lu the cutest owl and book- it sure is a HOOT-ha!!  Thank you Trish and Blaine for your nice note and generous donation to PKS Kids.  Thank you Katja Barlic for sharing the Get Closer video-your Ela is so adorable!

Ela and her family live in Slovenia

Dreams

Little Lu is one of the luckiest little girls in the world.  She now has her own very special Dream Catcher!  Our friend, Hanner Keyser, has been in Ecuador for the last 7 months and she made it for Lucia from remnants she found on the beach- shells, vine, and other pretty beach things spun together to help Lu's dreams come true!  Thank you Hanni- its soooo beautiful!

beautiful dream catcher

Lu's nursery w/ her dream catcher up
high in the corner so it can catch dreams!

On Thursday we were out n about and I decided it was a good time to go meet someone special, and introduce this special someone to Lucia.  Melissa Borders works just around the corner from where we live and we have a very unique connection.  Almost 18 years ago, when Melissa was just 22, she gave birth to a little girl named Jessica.  Jessica was diagnosed with PKS shortly after birth-one of the only in the country at the time.   Jason found out about the Borders through PKS Kids and they are the only other family in Colorado that we know of...  We have talked to Melissa a few times about getting together and it hadn't happened so, knowing that she worked less a mile away, I decided to just pop in and say hi and give her a hug-I wanted a hug from her..   I probably should have called, I could tell that the memories came flooding back for her...but she was soooo nice and wanted to hold Lucia right away, the whole time we were there.   Earlier in the week, I was on a walk with the dogs and Lucia, and we passed a man doing work on a nearby store.  We started talking for a bit, while my dogs were sniffing, and he told me about his 2 big dogs and his active 3 kids.  Not knowing anything special about my family he looked at the stroller and said, "this is the easiest it gets, enjoy it".   I think Melissa felt that way when she saw Lu.  So small, so sweet, just a baby being a baby.... we can carry her around and love her and feed her and comfort her- its easy and its awesome.   Jessica is now almost 18 and obviously much bigger and Melissa recently made the extremely difficult decision to have Jessica move in with her ex-husband, Jessica's dad, "she is just too big for me to carry and take care of".  It is obvious how much she loves her Jess from the bit we know about her..she sees her a lot and can't imagine her life any different, but it is different.  As Melissa said, "she is so pure, these kids are so pure".   Jason and I have plans to meet Jessica with her mom and dad on the Sunday after Thanksgiving.  I'm so excited and honestly scared, I hate that I'm scared.  We know all these kids are on their own path but we just don't know.
We do know that we have dreams for Lucia and I'm sure Melissa still has dreams for Jessica, and we have no idea what dreams may come.  But we will do our best to capture those dreams in Lucia's new dream catcher, and continue to pray and add prayers to her prayer box...  We have been given a pure little angel, and that in itself is a dream come true!!!

taken last week- Jessica and her sweet younger brother Nick

Thank you again Hanni for the nice gift, we are very glad you are home!  Thank you for more Lucia Light T-Shirt purchases- Kristi Spinell Braskett, Katy Wafaie, Keri Burnette, Candace Richter, Melissa Scheidt Scofield and my sister in law, Courtney Weissensee!  Over 150 t-shirts sold!!! which means over $1500 to PKS Kids!  THANK YOU!
Thank you also to Maura for making more peas for gifts- soon to be available online with proceeds going to PKS Kids!  Peas, Tees and more coming soon!

May all YOUR dreams come true!
Love,
Little Lu

LuDoll!

there once was a doll named Lu

she had the prettiest blue eyes

and a colorful fleece

and a mini miniskirt and polka dot tights

and she loved to look around

and she was sweet

 so  sweet

so sweet....

tweet!  the end :)
xo

Charred Chicken and other little things

gigglin little girl

Just a little blog about an uneventful turned eventful weekend and such..
Jason and I had a little more of an eventful weekend than we had planned.  Sunday morning we discovered a pipe had broken in our basement, probably 4 days earlier, and water had been soaking the newer carpet and streaming down the walls..but luckily, Jason's sister Sara's boyfriend, Shane, is in the landscape/sprinkler business and came over in a jiffy to help us out.  Hopefully nothing a few rental pieces from Home Depot won't fix.  Then one of our dogs, Mr. Blue, came down with a swollen eye from a sty or a bug bite.  Next, a malfunction of the garbage disposal.  And then a GIGGLE from our Little Lu.  She seemed to think the order of events was somewhat funny and decided to give her mommy 4 sweet little giggles in a row- a RECORD breaking giggle session for Lu!  Now that's a Great day!

We also had planned to go to a couple open houses that afternoon to check out a few bigger homes that caught our eye-and all signs that day were pointing to BUY a new house!  So, a walk to the homes with dogs and stroller with Lu en tote was what we did.  However, when we got to the house and were picking up Lucia to go inside, one of Lucia's parents did not realize she was 'venting' her button (hooked up to a tube with a vent on the end so she can burp after feeds).  The vent in this case was tied to the side of the stroller so it wouldn't tip and spill any burp fluid...   So lifting Lucia out of the stroller, out came HER BUTTON!  Just a bare hole in her belly!  We knew this would happen eventually but we weren't quite prepared.  On the front porch of the 1st open house we were in a critical situation to either get Lucia home to put in her replacement button or go to the hospital for them to do it.  Luckily on our walk over, we had noticed my brother Joey's car, at one of his listings just a few blocks away. So we called him, he rushed over, picked up our whole crew, and sped us back to Holly street.  I tried, then Jason tried, then Joey tried and success! Joey got the replacement partially back in and then Jason got it the rest of the way!  WE DID IT!  Honestly, it couldnt' have been a better situation to have all 3 of us there, together to do this.  Joey is the most calm, cool, and collected person I know in an emergency situation. Also, as one of her favorite uncles, he is around Lucia a lot- so it worked out as best it could!  THANK YOU BROTHER JOEY!  And last but not least, Jason brought home one of his favorite items to grill, a marinated chicken from Tony's Meats.  About twenty minutes into cooking the chicken outside, we noticed the grill was engulfed in flames from a grease fire! Poor little charred chicken.  Phew, quite a day.

Today, Monday, Lucia had a really good physical therapy session.  Rebecca Downing, her PT, said she is seeming a lot stronger when we help her sit and her eyes have been tracking much better too!  I love watching her therapists with her,  she tries SO HARD and its hard for me to not step in and help my little girl...even just holding up her neck can be so difficult for Lucia so its amazing to see her progress and to hear it confirmed from her therapists.  Little birdie steps is all we need..

Monkey business from Jessica

And once again I was touched by the love of old friends.  It can be the littlest things that just 'get me'.  Someone I don't even keep in touch with from college,  but someone that wanted to show her support ordered 2 Lucia Light t-shirts.   I was holding Lucia when the order came through on my phone.  I just looked at her and thought how much love she as spread. A joyful tear, a kiss on her sweet little lips, and a big breath of fresh air.  Thank you Sara Bosin Fink!
Thank you Jessica Haller for the adorable monkey and banana toy with the matching Lucia blanket- Lucia isn't the only one that likes that monkey, mr. blue was busted carrying it around today..

Thank you Kristin Borgman for the very, very nice card- miss you Schaef! Thank you Taryn for the drop off of the most delicious pumpkin dark chocolate muffins!  Thank you Hunts and Fables for a fun night out Saturday and thank you Kim, Joey and kids for watching Little Lu! Congratulations Slaytons on the addition of your new PUPPY too!
And November marks the beginning of many birthdays in the family.  Tomorrow we celebrate Kent Dawkins, Jason's dad!  And then Sunday is a very special day for another very special member of our family.  My weimaraner, Frieda aka Lady Freeds, who I've had since she was 5 1/2 weeks old, is turning 10 years old on Sunday!  I love you Frieda and can't wait to celebrate with a trip to the indoor dog pool-dog friends welcome!!!!!
AND the total count is in and the St. Lucia White Party came to $28,970 raised.  Our little Light and her parents, are Shining Bright with LOVE! God Bless!

Freeds!

aw poor lady frieda..she just looks down, she really loves Lu!

Pretty things

Our blue eyed pretty girl

While just five months ago, Jason and I were a bit scared by medical equipment, we now welcome medical devices for our little Lu.  The equipment can be her friend, and if it helps her in the long run, bring it!  We also realize that it can be very difficult to even have access to good equipment, due to the expense, making it hard for insurance to approve...  Fortunately, our doctors, in this case, her pulminologist, Margarita, pushed to get Lucia a special and very expensive vest, and after a half dozen phone calls to me and the companies, she was approved!  With Lucia's low tone, lung and heart conditions, she will have trouble coughing up 'the bad stuff aka mucus' so she is susceptible to pneumonia and serious colds...so she now has a special vest to assist her.  Margarita showed me a little black vest in her office, and so that is what I expected when the very heavy box arrived.  On Tuesday night, the rep came by to show Jason and I how to use it...and low and behold we pulled out a little pink vest from the box.  I know that may not sound too exciting but it is!  All this medical jazz can look so medical and to have it spruced up means so much, a pretty vest for Lu!  Two hoses attach to the vest from a machine that pulse and fill up with air so that there are hundreds of tiny compressions on her chest and back..helping to break down anything that may need to be broken up and out of her system...the unwanted mucus.
Two times a day for about ten-twenty minutes and they say it feels like a massage.  It truly is amazing what is available.  We actually even like the pulse-ox machine (the one Jason was looking forward to chucking out the door)  it gives us a sense of ease.  We know she is good when the alarm does not go off.  And the Lubird is getting stronger and less and less alarms.  TWEET!

Pretty in her new pink vest

On another tweet note, I had a great night with my friends last night.  My sweet dad insisted that I take out the hosts of the St. Lucia White Party..his treat!  After some arm twisting the girls agreed and we met at a swanky new restaurant downtown.  It was a perfect 'wrap party' night!  Thank you dad for giving us a very special night to celebrate over $20,000 raised for PKS Kids!!!!!!
To end the work week, on this Friday night, my husband, my daughter and I cooked and took a bubble bath.  If only the dogs could take pictures...   Needless to say, it was a good week!
Thank you pretty pink vest for being here to help Lucia and while also looking stylish.  Thank you dad for ALWAYS being the best Pa to me AND my friends-I'm so lucky and I love you so much.  Thank you husband for squishing in the tub with me and the Lu! Thank you Cayla Schweitz,  Leigh Leffler Liebert, Ben Salyers, and Keri Burnette for purchasing Lucia Light T-shirts!  Thank you Kristin Schaefer Borgman for your generous donation to PKS and also your t-shirt purchase.
And Andrea Murray- you have had a very, very tough diagnosis that you have been fighting and now another has come your way..  You continue to reach out and pray for our family, while you have so much going on.  The fight of your life, while staying positive and thoughtful.  Thank you for your beautiful messages for Lu, and for your generous donation to PKS and t-shirt purchase.  Your are also in our prayers.
Many friends from growing up,from high school, from college, and after college, and friends now-thank you all!
And a HUGE SHOUT OUT to our neighbors, David and Aliza on the birth of their son, Theo!  We can't wait to meet him!

Pretty Girls
Cholon Bistro- St. Lucia Wrap Party Celebration

every step of the way!!!

Laura, Lu and Me and TCH for Lu's 6 month appt

When your husband can't make it to a doctor's appointment for your child, your best friend is just that, the next best thing.  My best friend, Laura Huff, didn't hesitate to miss work when I asked her to go to Lucia's 6 month genetics appointment on Friday.  The appointment was as expected, nothing monumental, but good to see Lucia's geneticist, and to know that we are doing everything we are supposed to be doing for Lucia.  How many times did Laura pick up Lucia's pacifier from the floor and wash it off, I don't know, but it was a lot, and she has done a whole lot more.  I do know how many times she has reached out to me in the last 6 months-every day since April 26th, 2011-the day Lucia was born.  How many times am I glad she reached out to me to check in, every day since April 26th, 2011.  We have been friends, like sisters, for almost 10 years, since we met in our neighborhood walking our dogs, and since Lucia was born I feel like I have seen a different side of Laura that is more than I could ever ask for.   She and her husband Adam visited us at Rose when Lucia was born, they were here to help the day Lucia came home for the first time (in a moment of panic that first hour, Adam even offered (but didn't)  to test out my pumped milk to make sure it wasn't too hot for Lu's little mouth- :) !!! ), they came to RMHC/Rocky Mountain Hospital for Children, where Lucia was for 10 days to have her surgery, EVERY single day, if even just to give a good-night kiss to Lu, they walked our dogs when we could not, they prayed with their families for Lu, and so much more.   The love that Adam and Laura share for each other is transparent the moment you see them together and Jason and I have seen the transparent love that Laura and Adam have for little Lu just by watching them with our little girl.
During this journey she has always helped me look on the bright side.  She has cried with me, rejoiced with me, even on the littlest things, she has reminded me that if, during rough times, there is an option to treat Lucia, even if its scary,  "at least there is an option and we'll figure it out."  On my birthday this year, she gave me a special card and wrote "...Whatever lies ahead, know that I am going to be there every step of the way!!.." There is not one moment that she has not proven that.  A phone call, a text, a cocktail, a yoga class,  a walk to talk about many things, a walk to just be with your friend by your side in silence,  a friend to love your child as much as you could ever ask anyone to, even when you didn't ask.

L is for Lucia, L is for the light, and L is for Laura. Big steps, small steps and maybe even some back steps, I know that Laura will be there EVERY step to share and cheer on The Light that Lucia is here to share.   We love you Aunt LaLa and Uncle AhAh  (that is what i think Lu will call them when she can).  Thank you for being there with YOUR LIGHT every step of the way.

1 month old at RMHC Laura, Lu and Adam

2 days old.  3 of my favorite girls- Laura, Lu and Kimmy

Lucia's FIRST babysitters, Laura and Lu - Adam taking the picture.

Thank you Joe Eschelman for Lucia's LeHigh sweatshirt- you made Jason's week.  Thank you Heidi Harding, Topaz Roberts, Sara Fox, Betsy Lummis, Lisa Olsen, Brande Lamb and Brandi McKenzie for purchasing Lucia Light T-shirts! Thank you Laura and Adam for letting me share the picture below..hope you don't mind! Thank you ALL for being here to share the steps of this journey!

Laura and Adam Huff- Halloween 2012-How Awesome are they?!