Wednesday, August 31, 2011

Sitting Pretty!

It's been another fine day/days on Holly Street!  We have been 'choosing the dog' as much as possible.  Stroller rides, talking to friends, playtime, infant massage, baths, and family time.
Lu even sat up against the couch for a good 20 minutes as we frantically and proudly snapped pictures- one of the prize pics above :)  Her GI doctor on Monday said that she looked great and we'll continue to increase her daytime feeds as we decrease her continuous nighttime feeds.   Lu selectively decided to sleep during her occupational therapy visit this afternoon but not to worry- we worked her when she awoke!  Tomorrow we have physical therapy and a visit to her eye doctor.

We continue to be amazed at our friends that show their love and support for Little Lu.

Thank you Taryn and Tim and little Trevor for your generous donation to PKS.  Thank you to the Schreiners and Thesings for your gift-which we will discuss more at a later time...still too touched for words.  Thank you to a dear childhood friend, Caryn, for calling, it was great to hear your voice and so nice for you to reach out.  Thank you Lisa for my pedi- enjoy your Italian Adventure!   Thank you my mom for helping all of your Denver kids out while you are here- we love you so much.  Thank you Uncle Dennis for your nice messages. Adam, thank you for Lu's hot pink headset- look for a pic soon- too cute!  Thank you Pura Vida for your upcoming planned event- more to come!  Grazie Karols- lei è così premuroso!

P.S.- if anyone has a suggestion on air travel with oxygen under a 1 liter flow- please let us know.  We'll be traveling to ohio to and fro :) Yes, that rhymes-Yo Yo!

Love,
Juliet, Jason and a girl named Little Lu!

Sunday, August 28, 2011

T-Ball Dog

Little Lu lifting her head so strong!
Lu is wearing a dress from the Grandma Elly collection
Jason is out of town but my mom, Lu and I went to Pathways church in Uptown and I'm so glad we did.  The minister Gil, told a lesson about balance.  Balancing your life...work, kids, faith, family, playtime, friends, travel, social media, stress and on and on and on... Balance can be one of the most difficult things- there just doesn't seem to be enough time and he also stressed the importance of rest..The Sabbath Day!  Work hard, play hard, but you should rest on the seventh day- just how God intended.  When you don't get enough rest its hard to fully live life...remember to take a deep breath and take in what really matters...   
He ended the lesson with this T-Ball story.  


"T-ball Dog"
I want to tell you about a T-ball game, a story credited to storyteller Bill Harley. If, like me, you grew up before T-ball, you’ll need to know that it’s a game like softball, but with gentle rules for 5 to 8-year olds, kids just starting out in life.
Now, the particular T-ball team Bill described had a girl we’ll call Tracy on it. Tracy had coke-bottle glasses and hearing aids on each ear. She came every week, though she wasn’t very good. She tried hard, but she never hit the ball, not once. Never came close. Everyone on both sides of the game cheered for her anyway.
The last game of the season, Tracy came up to bat, and through some fluke, she creamed the ball. Smoked it right up the middle, through the legs of the 17 players who had all come in close expecting an easy out. Kids dodged as the ball went by or looked absentmindedly at it as it rolled unstopped, heading into centerfield. When Tracy saw what she had done, she stood at home plate, delighted at her feat.
“Run!” yelled her coach. “Run!” Her parents were on their feet screaming. All the other parents rose, too. “Run, Tracy, run, run!” Tracy turned and smiled at them, and then, happy to please, galumphed off to first base.
“Keep going, Tracy, keep going!” yelled the first base coach. Happy to please, Tracy headed to second. By the time she was halfway to second, seven members of the opposition had reached the ball and were passing it among themselves. The ball began to make its long journey home.
Tracy headed to third. Adults fell out of the bleachers. “Go, Tracy, go!” Tracy reached third and stopped, but she was very close to her parents now and she got the idea. Tracy started for home.
Then it happened. During the excitement, no one had noticed the 12-year-old geriatric mutt that had lazily settled itself down in front of the bleachers five feet from the third-base line. As Tracy rounded third, the dog, awakened by the screaming, sat up and wagged its tail at Tracy as she headed towards home. The tongue hung out, the mouth pulled back in an unmistakable canine smile, and Tracy stopped, right there. Halfway home, 30 feet from a legitimate home run.
Tracy looked at the dog. Her coach called, “Come on, Tracy! Come on home!” The crowd cheered, “Go, Tracy, go!” She looked at all the adults. She looked at her own parents shrieking and catching it all on video. She looked at the dog. The dog wagged its tail.
She looked at her coach. She looked at home plate. She looked at the dog. Everything went to slow motion. She went for the dog! It was a moment of complete, stunned silence. And then, perhaps, not as loud but deeper, longer, more heartfelt, everyone applauded as Tracy fell to her knees to hug the dog.
Two roads diverged on a third-base line. Tracy went for the dog.

SOURCE: by the Rev. John Parker Manwell and the Rev. Phyllis L. Hubbell 

Gil ended by saying, "We choose home, home, home 6 days a week- 1 day a week or more- choose the dog."  

Maybe Little Lu will be like Tracy someday on the sports field...pouring her whole heart out and loving it all-win or lose- just seeing the beauty in each moment.  Today I had planned on yoga, yard work and laundry but then I decided to 'choose the dog.'   A perfect afternoon of play and cuddle time with Lu and our two dogs.

I didn't quite let Lu rest so much today :) - I worked her with some tummy time and its improving as you can see in the pic! 

Tomorrow we visit her GI doctor, Dr. Rosensweig, to evaluate her G-tube feedings and maybe adjust her eating schedule.  Wednesday and Thursday we have our weekly therapies - PT and OT.  We also have a visit with her eye doctor on Thursday.  Hope to have good news with all!  

Lucia would like to send her love and prayers to her friend Lexi, who will be having her 8th surgery of the summer tomorrow, Monday.   We pray that this is the final fix to your tummy problems little Lexi.  Big hug to you and your family.  We've also held Shaw and Nash Richters choo-choo train tonight and asked it to send it's strength to you.  

Thank you to Leticia Liggett and Liz Sheppard Kent for your Stella and Dot jewelry purchases for PKS. THANK YOU SO much!!!

It was a good day.  Night night.  

Friday, August 26, 2011

Jewelry!

I LOVE my new bracelet!
Yes, that is correct- Jewelry for Little Lady Lu!  Today is August 26th and today is Lucia's 4 month birthday.  She weighed in at 14lbs and 8 oz this week, so I suppose the little lady is ready for jewels :)  in two ways.

1) Lucia received a precious gift from our dear friends in Ohio- the Continis.  They have two sons and a very special teenage daughter, beautiful Alexa.  Alexa can tread water for 45 minutes and she lights up the room with her amazing smile!!!!  We think of you often, Continis, and are looking forward to introducing our little Lu to you, and precious Alexa.  Lucia now has her first piece of jewelry- a tiny silver bracelet that fits her tiny little wrist perfectly!  Thank you Mike, Kathee and Alexa

2) Did you say Jewelry Party?  My friend, Kirsten Vali, is hosting a Stella and Dot jewelry party in Lucia's name!  You are invited to come and shop in Denver-if you can- and if not you can shop online and she will be donating to PKS Kids!   (singing) AHHHHH AWESOME!  please email me- juliettravel@yahoo.com -if you would like to join in on the fun for a great cause.  The info is below- thank you Kirsten!!

Now I'm off to play with Lucia and work on some more tummy, tummy, tummy time!  Thanks Elyse for sprinting over to help out tonight- she really sprinted.  And Lu would would also like to say thank you to Ken and Brittany for her fun new outfits and a hello to the Huffs high on the Marooon bells! 

xoxoxo

Tum Tum Time Lulu


You're Invited!
Save the Date!
....for Lucia’s (Shop for a Cause) Stella & Dot Trunk Show.

Time to indulge in a little style and fun. While you mix and mingle, our Stella & Dot Stylist, Kirsten Vali, will share a trunk show of the celebrity-coveted Stella & Dot jewelry collection. You may have seen it featured in InStyle, Lucky, Real Simple or Oprah or worn by celebrities such as Penelope Cruz, Katy Perry or Debra Messing, to namedrop a few.
Designed in New York and San Francisco, the pieces are so irresistible and affordable, you will be certain to find a little something special. 
Stella & Dot is not available in stores, so mark your calendars for this special shopping experience. And remember, good friends share even their best style secrets with friends -- so bring one along!
Shop for a Cause: 50% of Kirsten’s personal commissions from the night will go to PKS kids in honor of Lucia….think Holiday shopping early. If you cannot make it you can still Shop for Lucia by going to www.stelladot.com/kirstenvali, click Find Hostess in top right corner and put in Shop for(first name) Lucia (last name)
Formal invitation will follow… Trunk show will be held at Cherry Creek’s newest and hippest wine bar- VINUE….from 6:30-9. Stop on by!
Hope to see YOU- Juliet, Megan, Kim, Laura, Elyse, Greta, Lisa Tate, Tonya, Katy & Karen
Kirsten Vali
Independent Stella & Dot Stylist

http://www.stelladot.com/sites/kirstenvali



TRUNK SHOW DETAILS
Date/Time:
Thursday, September 22, 2011 6:30 PM

Hosted by:
Shop for Lucia
3036016843
kvali@comcast.net

Location:
2817 E. 3rd Ave
Denver, CO 80206

View Map/Directions 




Tuesday, August 23, 2011

Lu Inspired!

Rainbow Bright
When Jason and I were expecting we chose NOT to find out if we were having a boy or girl.  He wanted a boy and I wanted a girl-at the beginning.  When it was time, all we wanted was a healthy baby.  I was thrilled and didn't even believe it when the doctor said-'It's a Girl!"  I really didn't believe it.  A dream come true!  Pink Ribbons, tutu's, colorful and unmatching patterned outfits, purple tights, braids, floppy big hats, a new best friend, ruffly long dresses-day and night, so fun!  Growing up with four brothers, I always longed for a sister to dress up, share clothes and lip gloss but hey- I got four awesome, a bit smelly at times, funny and loving brothers.
Since little Lu has come into our lives I have gotten inspiration for so many things.  I stop to smell the roses more than I ever have, I let time go by just holding Lu because I know that is what is important at this moment,  right here and now.  I don't know what the future holds, for Lu, myself or Jason, so why rush off to do things that don't really matter... when you have ALL you need, right in your arms.
Now that Lucia is almost 4 months old, I have grown to be inspired by her wardrobe too!  My usual outfit consists of mostly three different colors- black, gray, white - with an accessory or two to add a little excitement...but still not very colorful.   Jason used to comment after I decided against a colorful outfit-  'it was too fun".  He was probably right...'too much fun'.  NOW I have been inspired by Little Lu once again.  I have purchased a few items that I call my  'Lu Inspired Line'.  A flowered skirt, a colorful patchwork top, even floral and pink framed sunglasses and now pink shoes!  I dress up Little Lu in the clothes she has been gifted and they are SO FUN and I want to be like Lu!
I feel like I have loved like I never knew, have cried like I never knew, have learned more than I ever knew, have bonded with friends, family and my husband like I never knew, and Little Lu it has only been a few months!  And now I love to add some color to myself because I want to be like Little Lu- I never knew!  Lu you are my inspiration!
My new pink shoes from the "Lu Inspired Line"
Thank you Kristi, Scott, Kate and Erin Braskett for the care package- what a beautiful sweater, great music, and those Ohio buckeyes (chocolate and peanut butter candy)-mmm i think i may have to go grab another one now.  Thank you Nonnie (Jason's mom) for the comfy sleepsack-Lu is soundly asleep in it right now, and thank you for the 'family' bracelet-representing Jason, Lucia and me and even the two dogs-its so beautiful and I wear it every day!  Babo and Nonnie, we also hope you're having a great time in Alaska-we miss you!
Thank you Laura and Adam and Keri for going to church with us on Sunday-loved having you there!  AND tomorrow, I'm heading to the airport (in my new shoes) to pick up my mom for a 10 day stay!
Lu can't wait to see you grammy!!!

Friday, August 19, 2011

A girl named Lu

I'm in love with a girl named Lu
precious little lips and eyes so blue
I'm in love with a girl name Lu
this in love?  I never knew!
I'm in love with a girl named Lu
kiss her, hold her, the whole day through
I'm in love with a girl named Lu
its True, so True, Little Lu ITS TRUE!

Oh Little Lu,  this week has been so great.  I feel like she can finally see the world, including us, and that she is soooo very happy!    It's crazy how much more you can love with every new day.  I have lost track of how many times she smiles a day- now THAT is A-MAZE-ZING-ZING-ZING! 

I want to say thank you to two of Jason's friends.  Now girls, we have been so touched with your sentiments-truly, but for guys to go out of their way and buy something special for Lucia-unmarried guys- that just struck a cord!
Tom Quirk- thank you again for your gift shipped from California-Lucia now has her very own Bronco jersey- she had been wondering about one of those, so now we can cross that off the list. 
Luke Braly- thank you for bringing Lucia a gift all the way from the Caribbean!  A cute reversible Caribbean fancy doll.  I can just imagine you boys both picking out gifts for Lu and that makes me smile.  Luke has a very special sister, Katie, with cerebral palsy.  She is sharp as a tack but just has trouble communicating and 'operating' as a normal person can.  We would love to meet her sometime Luke-let's make that happen.  Amy Hootman, thank you for you nice card and thank you to my girls for a fun night out on Wednesday.  Hi to Joseph, the football star, and Lizzie, the singer, in Carmel IN.  And Simon in Michigan-we pray that you have a GREAT future of healthy controlled or NO seizures ahead! 

I'm in love with a girl named LU

good bye for now, toodle tee, WOO HOO


Jules, Jason and a girl named Lu
and not to forget- two dogs too!


Daddy and his little girl
Our sweet dogs, Blue and Frieda



Wednesday, August 17, 2011

Tracking and Grandma Elly

Lucia woke up around 8AM this morning, in a very smiley mood!  Cuddles, hugs, kisses, diaper change and then the big decision of every day- what to wear, what to wear- and then we picked out the perfect outfit! A tiny dress, with a bright floral print caught our eye and we decided,  for some reason,  it was perfect for the day!  I had to send my mom the picture of the day with Lu in this dress.   I call this outfit the Grandma Elly dress because it's so similar to an outfit my Grandma Elly would wear when she was alive.  My mom's mom , Eleanor Marsh Kirk, was so full of life and I have no doubt that she loves loving and watching Little Lu from above.
After getting dressed, we had a 9AM in home appointment, and then at noon our once-a-week in home occupational therapy.  Lucia is tracking!  Tracking,  meaning she moves both eyes to follow something.  We have been working on this and our amazing therapist, Kristen Frank, held Lu today and moved Lu and her eyes kept on her, the therapist!  If the object doesn't move but she moves,  her eyes move.  Right now she's not quite ready for the object to move and still track.   Awesome Little Lu- sooooo proud of you!
Smiles, smiles and more smiles, tracking and pretty dresses...what more could happen?
Well, about 4PM I got a text message from my mom saying...
"Loves Lu's pic in Grandma Elly dress!  Happy Birthday Mom! She would have been 86 today...Sure miss her!"

I couldn't believe it when I read this.  I knew we picked out this dress for a reason.  I do not remember birthdays and had no clue it was my Grandma Elly's birthday when I put that dress on Lu.  That is the second time she has worn that dress since the day my mom gave it to me, 2 months ago...  Love you Grandma Elly.  So happy to have you as my Grandma and Little Lu can't wait to meet you in Heaven someday.

Night Night Grandma Elly, Happy Birthday to You!
Love,
Lu, her mommy and daddy

Grandma Elly and Grandpa Kork at a BBQ- Whoops, spilled a lil 

Happy B-day Great Grandma Elly!
Lucia's OT, Kristen Frank, tracking exercise and working!



Monday, August 15, 2011

Sunny days and Seven


I can't believe it's already mid August and my plans of frequenting the pool this summer have not happened frequently.  But, we did go today and had such a nice time.  We met my sister in law, Kim, and her 3 kids-Hudson, Marco and Charley, and my friend Traci Green and her 4 kids- Logan, Croix, Seven and Sunshine.  Lots of great kiddos!  Lucia and I got in the water for a bit and then we found a nice spot under a tree-cool and shady.  She was soooo exceptionally cute while we were there and the kids, aged 1-13 all came over to visit Little Lu at one time or another.  With her g tube showing and oxygen in nose I sometimes think that has to be scary for little kids to see.  All were so sweet.  Lu's 1 year old cousin Charley even helped Lu keep her pacifier in her mouth-so cute.   After the kids left, I got a text message from Traci.  It said,

          'Hey Jules! So we were leaving the pool and Seven (her 4 year old son) says to me 
          "Mommy you know aunt Ju Ju's baby? And i said yes and he says "her and Sunshine (her 1  year old daughter) should be friends.  That would be good."  
         Made me smile, had to share xoxo'  

That was such a nice text to read.   I know Lu will have friends like Sunshine and her two girl cousins, Charley and Kalya, looking out for her.  Thanks Seven, for reminding me of such a simple and beautiful thing- Lucia's friends!!!

Taken by Traci Green, 'Beautiful Lu"

Cousin Hudson and Lu having a moment

Saturday, August 13, 2011

Prayers

Throughout this journey of our Little Lady Lucia,  we have prayed.  We have received prayers on cards, strangers on two occasions have prayed on Lu while at church (!!!) , strangers have emailed us with beautiful prayers for our little girl, our minister, Michael Hidalgo, has a big printed L on his wall in his office to keep Lucia in his prayers, we have been blessed and blessed and blessed with an outpouring of love and prayer that we could have never dreamed of.  We have had prayers answered and some yet to be determined.  Our brother in law's boss' wife, Kim Campbell (someone we have never met) wrote one of the most beautiful prayers to Lucia shortly after she was diagnosed.   Kim was pregnant with twins and went into labor very early.  She lost one of the twins, her little boy, and his sister was in the NICU for months.  This prayer is so beautiful and many lines are in our thoughts ALL the time- ''This baby is perfect, you created it just how you intended to." "THIS DAY IS A GIFT!! All we have is today.  That's all we have. "  Kim, thank you for this amazing gift of your prayer.   The full prayer is at the end of this blog.
I have two little gift bags that hold cards and prayers that have been given to Lucia.  I like to go through the cards and reread them, read them to Lu, and cry and smile.  We LOVE EVERY one of them.  BUT the gift bags are just old bags and they are shifted from one room to the next and usually they are in the corner until its time to read them again- UNTIL NOW!   Tonya May McCabe dropped off a very special gift for Lucia on Thursday.  She made Lu, with the help of her boys, a prayer box!!!  The note inside reads "Put your prayers for Lucia in this box and watch them come to life.  I pray for Lucia's continued blessings in development and inspiration. 8-11-11 tonya" And on the lid it reads "Prayers are always answered"

Thank you Tonya and your whole family-Andy, Ryan ,Dodge, Truly, Emily and Lucy McCabe for your prayers, your friendship and for making such a perfect little gift for our family.

Thank you all for your continued prayers.  The support and love is an answer to our prayers.

Amen!!


The following prayer was sent from Kim Campbell on May 16th, 2011.  

Heavenly Father,

My heart aches to hear about the pain that Mark's friends are in over their child. Lord, although I do not know them, you do. Psalm 139 assures me that you know everything about them, all the pain they are in, all the anxiety they are experiencing, all the grief and sadness and worry that is weighing them down. Please reveal yourself to them in a fresh and powerful way today, show them your deep and wide love and allow them to soak in your comfort. Heal their hearts, give them wisdom to make decisions on behalf of their child, bring forth knowledgeable and compassionate doctors and nurses and surround them with loving, supportive and encouraging family and friends. Please give them an abundance of energy to get through these days and give them proper perspective and great faith in you.
Psalm 139 also tells me that you made all the delicate, inner parts of their baby's body and that you knit it together in its mother's womb. You made their baby wonderfully complex, your workmanship is marvelous. God, you do not make mistakes!! This baby is perfect, you created it just as you intended to. Thank you for this child. Thank you for making this baby so special, so unique, so capable of touching the lives of so many people. What a gift!
"This is the day the Lord has made, I will rejoice and be glad in it." Although I cannot understand the parent's feelings or struggles or worries about their child, I can understand suffering because of love for my children and the pain I felt when I lost my son. I know that THIS DAY IS A GIFT!!! All we have is today. That's all we have. We are not certain about tomorrow, so we must thank you God for THIS day and be so appreciative of our opportunity to love and take care of our children. They are not ours, they do not belong to us. Our children belong to you Lord and you have been so amazingly generous to allow us to take care of them while they are here. We must be present, fully present in THIS day, accomplishing all things that you have willed for us. God you made THIS day for a reason, you ALLOWED and PURPO! SED us to be a part of it for something specific and special. We will never know why today we might face things that hurt us or those we love, but we know for certain that you do not make mistakes, all things are perfect in your plan and we are a part of it. Thank you.
I pray that this family finds comfort and peace in knowing that we are standing for them in prayer and will continue to pound the gates of heaven of their behalf. Thank you for the opportunity to know their story and to have the privilege to pray for their child.
In Christ's Name,
Amen

Thursday, August 11, 2011

PKSKids.com


Jules and I will never forget the day that Lucia was diagnosed with Pallister Killian Syndrome.  I can almost remember every second of the afternoon.  Driving to the hospital (trying to convince Jules that nothing was wrong with our little girl), sitting in the waiting room watching kids with serious genetic issues come and go from regular appointments, and then finally sitting in the doctors office waiting for the geneticist to open the door.   However, before the geneticist showed up, a "genetic counselor" opened the door with a stack of papers she printed from the Internet.   She walked us through sophomore biology, explaining what chromosomes are and what a normal person's genetic make up is suppose to look like.  Finally, after about 20 minutes of this, she explained that Lucia had an extra short leg of the 12th chromosome in approximately 5% of her blood cells.  She told us that this abnormality was called Pallister Killian Syndrome and only 100-300 other kids worldwide had ever been diagnosed.  While I was still clinging to the hope that Lucia was a normal baby, Jules asked several very pointed questions.   The counselor was a very sweet and extremely intelligent young woman, but was very non committal as to what the diagnosis meant to Lucia.  Mainly, she kept referring to what she had found on the Internet, as she had never met a child with this syndrome.

There were several dated and crude websites with either brief or overly technical explanations as to what was wrong with our little girl.   However, she directed us to www.pkskids.com, a  website managed by an organization call PKS Kids.   The site is similar to a facebook for families touched by PKS.  Parents share stories about life, helpful caring hints, and post pictures of these awesome little angels.  Jules and I both frequent the site and read of parents whose bravery, patience, love, and dedication to their kids and each other is beyond words.   We both hope that we can muster half the strength of these fantastic families.  The organization has also introduced us to other parents who have recently had babies diagnosed with PKS from all over the world.  On two occasions, I personally have met David and Emily Gold on business trips to MN.  The Golds had an exceptionally cute PKS baby named Lizzie on April 20th (6 days before Lucia was born).   Juliet and Emily frequently send each other cute pictures and confide in each other.   They are a wonderful family.   We also recently received a very touching email from Samantha Karol who has been following our blog, which she found at PKSKids.com. She is the mother of a super stud Italian PKS baby from Bologna Italy.   Her son, Giacomo was born a month after Lucia.  We hope to one day visit Samantha and Giacomo.   Honestly, we hope to one day meet all of the kids and parents some day soon!

Juliet and I are extremely grateful to have a place to go where there are other parents touched by PKS.  I know there are a lot of people that have helped PKS Kids flourish, but one mom really made it all possible, who not only started the site and organization, but she seems to be the one that makes the whole thing tick.  Her name is Gretchen Peters.  She has five children and is the mother of Simon, a PKS child.  Somehow, while being a super mom, she personally welcomes all of the new members, organizes events, makes herself available for phone calls, and manages the web site.  She was the first family member of a PKS kid we spoke to after Lucia's diagnosis.  After hanging up the phone, Jules and I both agreed that somehow, we'd be able to make things work.  

Thank you Gretchen and thank you PKS Kids.   Your guidance, strength, information and friendships have given us a chance to be better parents to our special Little Lu.  

Love, 
Jason, Jules, and Little Lady Lu.  

Tuesday, August 9, 2011

Blue Eyes

I remember my dear sister in law, Kim, telling me how she and her first born, Hudson, gazed into each others eyes at the hospital, the first day he was born- that was about five years ago.   Such a simple moment, yet so beautiful.  A mother seeing her baby face to face for the first time.  
I have had times when I was so worried that Lucia couldn't see normally or didn't know how to look - but she can and it happened, it just took a bit longer!  Lucia does focus but she's had one eye that, at times, acts like a lazy eye.  Her two eyes often would not move together, and sometimes it seemed she would be looking over our shoulder, even when we were face to face.  Vision can be a big problem with PKS so I've/we've always been worried...  She has been looking at us but today seemed to be her best day yet.  Tonight, Lucia and I spent over an hour, face to face, just staring.  We stared and stared and held hands and touched faces and stared.  Looking into someones eyes does not seem unusual but when do you really stare, without words, without hesitation of getting lost, with no reservations, without letting yourself go, just gazing into someones soul?
Little Lu with her big blue eyes, inches from my face, Heaven on Earth.  Nothing in the world matters when you look into the eyes of a baby.
Our little angel with the big blue eyes, we are completely in love with you.  Time can seem to stand still when you are here and we love every second of it.

Thank you again Lucy and Elizabeth for coming out to Denver-it was perfect and we'll miss you...

Sunday, August 7, 2011

Lucia Elizabeth meets Lucy & Elizabeth!

Lucia's doctor visits went very, very well last week.  We were soooooooooooooooo soooooooooooooooooo happy to hear that her heart and lungs are improving, that her apnea is mostly central not obstructed (therefore not needing any surgeries and it will hopefully improve with time), and her last visit on Friday- the Ear, Nose and Throat doctor agree- she is looking good!  After a week of stressful and very important doctor visits we were ready to have some fun and celebrate!  The timing couldn't have been better- my good friend, Lucy (the friend that made the amazing L ) flew in with her sweet daughter, Elizabeth, on Saturday and are here until Wednesday!  Yippee!!

Lucia loves Lucy, Elizabeth loves Lucia, Lucy loves Lucia,  and I love them all, its a circle of love!
Car rides, cuddle Lu time, cocktail time, chat time, camera time- amazing quality time!

Five and a half year old, Elizabeth,  has decided that Lucia is the 'cutest baby in the world' and takes lots of pictures.  Lucia has taken to Lucy and it's amazing to watch.  As I type,  Lucy is talking to Lu as Lu coo's back to her in pure contentment- the have a lot to catch up on.

Thank you Tom Quirk for the bronco's stuffed animal- I am not kidding, she smiled at it 3 times right away!  I've never met you Tom, but I like you already!  Thank you English family for the sweet treats from Graeters Ice Cream!  Thank you Lucy for your friendship and for coming out to meet, love and visit with Lu, with your sweet, sweet daughter, Elizabeth.  Thank you God, for the news this week, for my amazing friends, and for the prayers.  Jason and I feel very very, fortunate, to say the least.

We love you Little Lu!

Thursday, August 4, 2011

Pop Quiz!

Roses are Red, Violets are Blue
What is missing on beautiful Little Lu?! 

No Oxygen, No Oxygen!!! 
Whoo hoo! Whoo hoo!

We are through our 3rd doctor visit of the week and things are going REALLY well.  On Wednesday, Neurologist, Jessica Litwin, agreed with the other docs - she looks good- and can wait another 3-4 months until we do another sleep study.  And then today, her cardiologist, Sam Brescia, told us the unthinkable-we can go without oxygen for an hour, here and there, while she is awake!  The abnormalities in her lungs and heart are improving and he feels she will only get better!  Yay Doctor Brescia.  So far, so awesome!  

Four doctor visits down this week, one to go.  Go Lu!

Thank you Tallie for the beautiful tulips, thank you Maria LePugh for sending Lu her first surfer clothing from Hawaii!  Thank you Katy, Ellis and Woodson for the yummy meal and flowers,  thank you Shanna, Martin and Camden for her beautiful monogrammed frame!!!! Thank you all for your prayers this week-yee haw!

XOXOXOXO

Jules, Jason and tubeless nose-at the moment- Lu! 

Wednesday, August 3, 2011

Continuation


We are so very thankful and feel that a HUGE prayer has been answered for our little Lu.  We hope the good news continues as Lucia continues her week of visiting doctors.   Neurology-Wednesday,  Cardiology-Thursday, ENT-ear nose throat doc-Friday.   All the doctors this week are going to have an opinion on what is best for Lu.   Although Lucia showed not as much obstructed (physical) apnea she still has very significant and severe central (brain) apnea.  With oxygen she showed a GREAT improvement.  We postponed Lucia's swallow study for another couple months.  The swallow test is a very significant amount of radiation so if she didn't pass then she wouldn't have another for 6 months, so some of our docs recommended waiting a bit longer....

Thank you all so much for your celebratory shout-outs!  Lucia's pulminologist does not think Lucia will need a tracheotomy so again,  we are sooo hopeful that everyone else agrees.

I do know that Lucia had an amazing day of no doctor visits on Tuesday. We took a bath together- so fun (drying off in a white towel pictured above), listened to music and did her little stretches and exercises, ate, held hands, and gazed into each others eyes.

Let's continue to move 'onward and upward'.  We can do it Little Lu!!!

With much love and faith,

Lucia and her folks

Monday, August 1, 2011

Prayer answered


Over the last month or so, Juliet and I have made a habit of sitting in the back of church on Sundays and crying through the last few minutes of the hour.  Not a sad cry, but a cry none the less.  Really, I don't know why we cry but it gives us strength to get through the next week focused on life and our little girl (most of the time with a genuine smile on our faces).  We pass Lucia back and forth and talk to God.  I ask him why innocent little boys and girls are born with serious disabilities.  I ask that Lucia and Jules are blessed with as much love as he can muster.  I  ask that he will give our little girl the heart to battle through whatever challenges she is faced with as she grows into a beautiful little lady.  Today it seems, God has answered one of our most recurring prayers.

Today, we met with Margarita Guarin, Lucia's pulmonologist, to discuss last week's sleep study results.   It seems her obstructed apnea has improved with time and Lucia's continued development.   As a result, at least according to Dr. Guarin, Lucia will not need a tracheotomy or jaw surgery.   While I have said that Lucia seems perfect to me since the day that she was born,  Juliet and I have been bracing ourselves for some tough news.  We will be meeting with more doctors this week and hope they agree and that we continue to receive good news for Lucia.

After leaving the hospital Juliet, Lucia, and I drove to church to light a candle and say thank you.  It was so wonderful just to say thanks.

We love you all,

Juliet, Jason, and Little Lu.