Little Lucy!

Little Lucy and her Dad at Sea World 

Once in a while you see something that convinces you that there are indeed angles watching over all of us.  A few nights ago, I came across this video http://www.youtube.com/watch?feature=player_embedded&v=2OATh00cuS4 of one of our favorite PKS friends named Lucy performing at her school's talent show.  After watching Lucy's performance, I'm almost certain that Lucy is one of those angels watching over her PKS friends.  Lucy was diagnosed with PKS as a baby and has since become a stunning young lady with a fantastic voice.  Each PKS kid will travel his or her own path and are gifted with a dramatic range in cognitive and physical abilities.  Almost every PKS parent we speak with mentions Lucy as an example of a young lady with fantastic abilities who is as likable as she is pretty.  While we have no expectations as to what Lucia will aspire to, we always have Lucy in the back of our minds.  If nothing else, I truly believe that Lucy sings and speaks for all of the little ones that can't.  What a gift!  We have watched this performance over and over again and it gets better every time.  Simon Cowell would be proud!

Fabulouso first flight!

Lucia's boyfriend in Italy sent her a post on facebook, I think this is why our trip is going so well :) If you have time for a beautiful Italian song...
 'Happy first flight Little Lu! This song is for you, wishing you can come to visit us soon!!! Giacomo and Samantha from Bologna, Italy..




Lucia was magnificanto on her first flight!!!  Pacifier in on the way up and down (so her ears were not affected), no crying,  no fussing, big eyes, sleepy eyes, a few smiles, and one stinky diaper...
Last night we had a mini reunion with friends from high school,  Caryn Harter Morgan, Raina Gilmore Huff, Kristi Spinell Braskett and all our kids- 8 girls and 1 boy kids in all.  It was so much fun to see everyone-had been over 5 years since some of us had reunited!

AND the best news is-Lucia LOVES the low altitude, high humidity Ohio air!  She was on 1/4 oxygen of what she usually is on at night and so far today she is oxygen-tube free and is holding steady at a great level!  SO IN LOVE WITH OUR OXYGEN FREE GIRL NAMED LU!

Lots of love from grammy and grampa in their cozy Ohio house...times are good..and its only day one!

Viva Nuevo Philadelphia!  Viva Italy someday...

Ciao!

Mini Reunion with long time, great friends and lots of new mini friends!
Thank Morgans for hosting!

This little light

this little light o mine

i'm gonna let her shine

this little light o mine

we're gonna let her shine

this little light o mine

God's gonna let her shine

let her shine, let her shine, let her shi-ine

Lucia is Latin for 'light'.  Lucia is truly our light and every time i hear that song, it brings a tear to my eye, and my heart beats for little lu, and i could listen to that song over and over and over again, every single day.  Lucia did shine this week.  Two very successful and touching events, so much support, love and light.  My cheeks hurt from smiling after each event- Thursday, the Stella and Dot and then today at Pura Vida Fitness Club.  Jason and I took a rooftop yoga class, overlooking the rocky mountains, under a cloudless and blue as blue can be sky.  Billy P, my favorite teacher, led a beautiful and always challenging class, and we were surrounded by friends and people that wanted to help Lu and her PKS friends shine their light.  Over $2,000 was raised today!!

Tomorrow we are off to Ohio and it will be Lucia's first plane trip-eeeeeeeee it will be nice to get this 'first' over with.  I'm nervous but every first can make you nervous...and on the other side of that gate will be my parents and family for a very special event.

 Thank you to all that came out this week to participate and donate and share YOUR light!  This little light of ours we're sure letting her shine.   Thank you so much!

Much love,
Jason and Jules, and a very special and lucky girl named lu-our shining light!

Juliet, Elyse, Traci, Kim, Lisa all around little lu. And wearing 'lucia-light' t-shirts.

P.S- The t-shirts are for sale for $25 and 100% of the proceeds go to PKS Kids.  Let me know if you're interested in a 'lucia-light' t-shirt.  They say light in different languages on the first two lines, www.pkskids.net on the third line.  Orange or black print in a most comfortable and thin 'burnout' style t. Girls and boys sizes available.

GIRLS!

GIRLS ROCK!  Lucia and I just got home from her party, Stella and Dot!  I can't begin to say how much fun it was and amazing to see all the girls that attended- THANK YOU so much to Kirsten Vali for our fun gifts, and organizing such a special party for Lucia and PKS. I loved visiting with friends I had not seen in a while, with friends of friends that I had not met,  and I LOVED watching the girls meet and interact with Lu!  During the party, I was talking to a friend a few feet from Lucia when her feeding ended and her g-button machine started beeping (her g-tube is attached to a little machine and we program it for the time and amount-it beeps when its finished).  I looked over,  about to go over and help, but there were at least five girls surrounding Lucia, working on getting it done.  My heart melted for not Lucia this time, but my friends, loving and helping Lu.  As Jason said in his first blog entry, 'little lu has already brought out the best in us"....  I'll never forget that special scene.

Thank you again friends for showing me how lucky I am.  NO DOUBT Lucia felt the love around her tonight!

This week we also had another treat!  Wednesday we got the 'go ahead' to give Lucia a bit of yogurt!  So Jason and I fed our little girl, with a silver spoon, and cheered and smiled and carefully spoon fed our Lu.  Although it was small portion, two tiny teaspoons, it filled us to the brim with pure joy!  However, Lucia showed signs of possible aspiration/reflux later that night, so her pulminologist Margarita,  advised us to wait a few days, try it again and see how it goes.  She may not be ready, or maybe she just go a touch of a 'cold' on the same day...

Thank you Elizabeth Sheppard Kent (so nice to see your name), Leah Kirk, Anna Sugarman, my mom, Becca Reichenberg and Ginny Kullman for your online jewelry purchases.  Thank you Erica Abrams Cleary, Denise Castillo Dellisola (how are you Denise?!) and Dawn Sierens for your generous donations to PKS Kids!

I LOVE ALL THE SPECIAL GIRLS IN OUR LIVES!  GIRLS GIRLS GIRLS!!!  SIMPLY THE BEST!  XOXOXOXO

Stella and Dot Party-some of the shoppers
Lu's mom, Elyse, Maryann,Amanda,Stacy,Lisa and the hostess, Kirsten Vali! 

Sunday list

Dress Rehearsal for Phillip's Rehearsal Dinner

Even when you aren't in school or working, Sunday is a day to plan and think about the week ahead, especially at night.  We have a lot to do this week- sooooooooooooooo many things to look forward to!  A lot of feelings too- excited, anxious, hopeful and blessed...

1) Print off United Oxygen form for Lucia's pediatrician to sign- BECAUSE LU IS FLYING ON A JET PLANE NEXT MONDAY!  My younger brother, Phillip,  is getting married on October 1st in Columbus, OH and we will be there will bells on! So very excited!  His fiance, Anna Heston, is fabulous,  and we can't wait to officially add her to our family!

2) Monday 9:00AM Get ready for our first mommy and me yoga class!!!

3) Think about and smile because...Not ONE but TWO fundraising events in Lu's honor for PKS KIDS this week! For Reals!!!  Whoa!! Yippee!!

4) Have a hip hip hooray appt with Dr. Laurel Benson, Lucia's ortho doc, on Tuesday.

5) Check phone to make sure we have not missed any calls regarding Lucia and permission to eat yogurt! We are waiting to hear if she has the green light to eat a little thick yogurt 1 time a day.

6) Pick out Lu's outfit for Thursday night Stella and Dot Jewelry Party. I think she'd like to wear a dress or tutu or both!

7) Smile and squeeze and hug Lu because I'm in love with a girl named Lu!

8) Pack for our big trip because Sunday,  we'll be busy at the Pura Vida Fitness Club PKS Impact Event!

9) Make new list of everything that we have forgotten to prepare for trip.

10) Show Raina, who will be house/dog sitting, how to watch our doggies when we're gone.. feedings, tucking them in at night etc...

11) Check off list, drink champagne with my husband to celebrate Lu and our lives with all the love around!

12) Lots of thank yous to come too...this week!

Thank you God for giving us this week ahead..we are so blessed.

Pura Vida

Pura Vida is Spanish for "Pure Life".  For the last 3 years, I have worked at Pura Vida Fitness Club and it truly lives up to its name.  I planned on going back to work August 1st, but with the birth of little Lu, I am not quite certain when I'll be going back..  However,  my work family understands and is now hosting an event in Lucia's honor to raise money for PKS Kids!!  Please join us next Sunday, September 25th!  The Club will be open to members and non-members for this fun event- bring friends, bring family, bring your groove on, or your zen, or just come as you are! Yoga-inside and outside, Zumba-inside and outside, Cocktails and Raffles!  Pura Vida is the most beautiful fitness club I have ever seen and I feel very lucky to be a part of such a great place.  As yoga instructor Billy P. likes to say "lighten up and have some fun".  I hope to see you there-and I promise it will be fun! Thank you J Madden, Keith Moore, Heather Bahlmann, Billy Potocnik, Jamie Vance, Natasha Vukicevic, Wendi Schneider, Anna Sugarman and everyone else involved for helping create this special event!  Details below or visit www.puravidaclub.com for more info.  

Thank you my Pure Life Family!!!

Sundaes

Sweetness ready for test!

When I was growing up, my older brothers were always the smart ones in the family.  They would get all A's and B's or just all A's (if they wanted to be boring :) ) and I would get A's, B's and almost always, one stinky C.

Friendly's restaurant in Ohio- sundaes, fries, chili hot dogs etc. -would offer kids a special treat when they brought in their good report card.  For the A/B students(my twin brothers)- a presentation of a monstrous Reese's Pieces Sundae- giant scoops of ice cream, topped with hot fudge and caramel, doused by handfuls of Reese's pieces and smothered with whipped cream.  For those with a C (me), presentation of a much smaller traditional sundae- 2 small scoops of vanilla ice cream, hot fudge, a little whipped cream, and a cherry on top.  But I was still excited about my lil treat, and hey, looking back,  it was a lot less calories!

So..... Lucia did not earn herself a Reese's Sundae today at the Swallow Test/Study but she may have just earned herself a cute traditional Beautiful sundae!  She still shows signs of not swallowing properly- it trickled into her lungs and up to her nasal passage BUT they said they have seen a lot worse.  I got the honor- it was so amazing- to feed her strawberry/banana yogurt, a few tiny spoonfuls, and also feed her a bottle for about 15 seconds.  Awww it was nice to feed my baby.  She was so excited too.

But she can't eat if it is going to affect her lungs so we'll take it slow.  Robin, the speech pathologist at RMHC, recommends yogurt one time a day to see how she does and keep her interested in oral eating!!!  There is a lot of radiation with every swallow study so in 3-6 months she'll have another.   Robin is going to talk to Lucia's pulminologist and GI doctor and someone will get back to us on a plan of action.

So, could it have been better? YES.  Could it have been worse?  Absolutely.  So we are just fine.  Good job little Lu.  Any little bit of sweetness, big or small, is a treat! And you could not be sweeter!

Strawberry/Banana Yogurt at Swallow Test!!!! So fun!

The Reese's Pieces Sundae-that is way too much!

A perfect sized sundae for me and Lu

Successful Slumber!

Sweet Smiley Lu at her first sleepover!

Lucia had a GREAT slumber party at her grandparents house on Saturday night!  Around 1:30PM on Saturday, we dropped off our little four and 1/2 month old baby girl and off Jason and I went to Keystone for our friends' wedding.  I hesitated to text or call the full 1.5 hours drive up, but when we arrived I couldn't resist anymore and sent a simple text- "feel free to send pics".  Within a minute I had some of the best Lu pics ever!!!  As you can see, Lu was having the time of her life!  It would have been quite tough to relax and enjoy ourselves if we were worrying...so how could we with these shots of our happy girl!

Happy/Gigglin?  Lucia!

Linda sent more texts and pictures throughout the night/next morning and I felt so good knowing she was in such loving and great hands.  And I meant slumber party when i said slumber!  This was the order in their bed:- their two toy poodles- Marnie and Tobey, (Bobbo) Mario, Lucia and (Nonni) Linda.  SOOOOO cute!  I am so lucky to have them in my life and now Lucia's- so lucky.

On Tuesday, Lucia has a big appointment,  a swallow test.  If her throat muscles/tone has strengthened and she swallows properly- we'll be able to feed her orally! No biggie if not Lu, we are just fine with any feeding method that treats you well!  However, it would be amazing and super fabulous and incredible and a HUGE blessing from God, and Lu-tastic if she's ready to 'pass' the test...   I never liked tests..so either way is OK lil.  

Thank you Nonni and Bobbo for a fun Saturday night, it could NOT have been more fun and special! love, Lu

Thank you Nonni and Bobbo for a fun Saturday night, it could NOT have been more fun and special AND worryfree!  Love, Jules and Jason

Thank you neighbors- Matteo, Mello and Aliza and David for watching us too, Woof love, Frieda and Blue

Thank you Trish and Blaine for including us on your most special day! It was beautiful and a blast!!  Love,  Juliet and Jason

This week I'm going to share an upcoming amazing event that will be held on September 25th for PKS Kids!  Thank you Pura Vida!

First Night away... Ski Tip Lodge, Keystone
Trish Lovewell and Blaine Versaw Wedding

Pebbles

Sometimes you just get sad but most of the time you don't.  Jason had a little rough patch for a moment early tonight.  We had Lucia's Physical Therapy today along with an evaluation on what our goals are for Lucia. Our initial goals have been met, which is great- turning her head both ways, making eye contact, gaining strength- wonderful!  Now we have the next 6 month goals and what we hope is - her eyes continue to develop, that she can learn to roll over (she rolled over for about a week and then stopped), that she will reach for objects that she sees, and that she smiles more and giggles! It's a bit difficult to talk about goals/milestones but you have to start somewhere and she is, right now, doing pretty darn great!

After PT, Lu had a follow up renal US/ultrasound.  Her left kidney was swollen at birth and the US showed less swelling so we were happy about that- another US in 6 months. There is something sad, touching, and cute all at once, to see your little child get an ultrasound or test- a little sweet baby on a big big hospital bed.  Lu just sucking away at her pacifier, happy as a clam, getting little tests.

When we get sad here and there, we don't really say a whole lot, we just shed a few tears, hug, kiss on Lu, and then smile and squeeze her. Tonight Jason just said 'it just doesn't seem fair that she has to have all this on her"- referring to oxygen and g-tube, and then the rest of the days activities.  It wasn't a big day but sometimes it just puts a big of a weight on your heart.  And then, you look at little Lu......ahhhh so Lu!

The night ended with a fun babysitting gathering at my brothers house.  We watched Joey and Kim's kids and it was really nice!  A bit of coloring, Charley and the boys playing with Lu, Chinese order in dinner, ice cream, bath time and bedtime-fun and easy- really fun!  Uncle Andy even came by to hang out.

Lu is soundly asleep in her crib, husband sleeping beside me and our dogs at the foot of the bed.  Happy Family-just a few lil pebbles along the road..but they are pink and orange pebbles..so they are still sweet and bright.

Cousin's on the Couch!

Cute as a button!

After a nice, long holiday weekend Lu had a doctors appointment to get her button/feeding tube changed for the first time since she had it 'installed, put in place...put in'.   She is supposed to have it changed every 3 months.   We have come a LONG way since she got her button on May 31st.  I never thought I could watch the full 'changing of the button' but it was no-thing, easy breezy!   I also realize how far we've come after spending the night at Jason's mom's house and explaining "Little Lu's Instructions".  Jason and I are going up to the mountains for our friends wedding on Saturday night,  so Lu will be having her first sleepover without me, at Nannie's, AKA Jason's moms, Linda and Mario's house.   Linda has been eagerly asking to watch Lucia so we can have some time together - dinners, daytime, nighttime... so when we received the invitation, I still hesitated a bit to ask, but she couldn't have offered faster to take care of Lu overnight.   The truth is, I just haven't had the desire to be without the little lady...but the longer you wait the harder it will be, they say....

So, last night we had a dress rehearsal.  Jason and I loaded up the car with her oxygen, food, stands, a few other various devices, Little Lu, our two dogs, and off we went for a BBQ and sleepover in Cherry Hills.   Lu and I stayed, dogs and dad went home.

Lucia doesn't seem too complicated 3 months into her medical routine, but we've come a long way..I must say!  As I was explaining all the instructions/details to Linda (which went on for a very long time), I would look up every so often to see if it was too much and ask, "is this OK? are you sure?" Linda never once seemed overwhelmed or worried, in fact, she couldn't have been more enthusiastic, excited, and focused!

The night went well- Lu and I slept in the spare bedroom until 8AM and when we awoke-Linda was pacing outside the hall just bursting to greet her granddaughter- so cute!  I know she'll be in great hands this Saturday.

New button on little Lu and her first sleepover!  Our girl is growing up!

Thank you Linda and Mario for being so comforting and excited to watch Lu!  Its only 85 hours and 30 minutes until we drop her off ...eeeee...I'm missing her already..

Love,
Lu and her new button on her belly, Lu and her cute button nose and well- she's just cute as a button (whatever that really means) she's very cute!

Laid back Lucia showing off her new button!

Little Friends!

Lucia has her own friends!  One special friend lives in Minneapolis, Elizabeth "Lizzie" Gold, who was born just 8 days before Lucia on April 18th and diagnosed at 4 days old with PKS.   Lizzie sent little Lu a care package this week- a pink tie-dyed onesie with a sparkly "L" on it, along with some other very cute girlie things.  We know Lizzie and Lu will have a face-to-face friendship one day, hopefully soon!  Lucia also has a boyfriend in Bologna, Italy named Giacomo Karol Gagliardi!  Giacomo was born 7 weeks after Lucia, on June 7th, and was diagnosed with PKS 3 weeks after birth.  We have just gotten word from his mom, Samantha, that something special is arriving for Lu from Giacomo.  Lu can't wait to meet you too, Giacomo, and give you a big kiss!  At just 4 months old, our little Lu has a best friend and a boyfriend! Thank you L & G!  Although we do not live too close and our babies are all under 5 months old, we are sooo happy to have your hands to hold on this journey together!

Handsome Giacomo Karol

Happy Elizabeth "Lizzie"

Eyes!  We went to the eye doctors on Thursday and he told us that everything looks normal, structurally,  and that Lucia will probably just take her own time developing her full vision.  We shared our concerns about her vision- doesn't notice anything peripheral, not always focused, eyes not always working together, sometimes twitchy movement, very small pupils, and he said there is nothing to do- he thinks that she'll get there- it just will take a bit longer.  Her low muscle tone affects her little blue eyes too.  Dr Arbuckle said "I'm a do-er.  I like to do things if I can to make it better but Lucia does not need anything done at this point".  So we were happy about that- you take your own time sweet baby girl.  

Looking forward to church tomorrow with Little Lu...her friends are in our prayers always- near and far. 

Thank you Ryan Smith, Rae Sandler, Brent Hedstrom and Luke Beatty for your generous contributions to PKS Kids!!  PKS Kids does sooo much research and awareness and without PKS Kids we would not know Lizzie or Giacomo!

xo