Little Lucia: 7/1/12

Monday, July 30, 2012

Summa, Summa, Summa-time!

My most favorite pictures this summer above! LUUUUUU We love you!!!!

It seems that things have slowed down and we are finally enjoying all the summer goodness you plan to do all summer. The simple and sunny things, and Little Lu has been enjoying the summatime indeed! This baby Lubird is even sportin' some serious tan lines (and I do apply sunscreen). She is enjoying the pool, bbq's, some 'firsts', family and friends! This past weekend we enjoyed our first semi-campout (sleeping on a patio beside the outdoors), we can do better and we will but it was a good start. Lu watched her first Olympic opening ceremonies-I LOVE the OLYMPICS!! And most importantly, our little Lubird has been happy, giving us smiles and lots of sweet songs. Here are some shots from our nice little weekend..

Cousin Kayla turned TWO!
HEY JUJU, I'M TWO YEARS OLD!

Break time-Daddy and Lu, Rosey and Taylor

Nonnie Linda and Lucia doing some laps and looking good!

pretty girls in navy stripes at a saturday afternoon party
Traci Green, Kimmy and Laura

A picture of Aunt Courtney looking beautiful for her baby shower in California-
she's due in less than 6 weeks!

Judges Panel at the 7th Annual Rib-Off competition on Saturday!
Tscharners house

Little Girls at the Rib-Off,
Laney Heil, Lu, Charlie Mae Tscharner, Brooke Moss, Anna and Emily Bacon and Elliott Sefarian

and Lucia enjoying a bottle and her first Business Jet Traveler magazine!
We love this magazine and the editor, Jennifer Leach English!

We thank God for our many blessings! May summer continue to be filled with sunshine and happiness and even some clean, fresh rain! Happy Birthday cousin Kayla, Happy Birthday my best friend, Auntie Lala! Thank you friends and family for a fun summa, summa, summatime! Thank you Sarah Norris Hepner and Lizzie Coffman Spehar for your donations to PKS Kids in honor of the upcoming St. Lucia White Party! Congratulations to the Richter Family for the launch of their new amazing organization for micro preemies www.beemighty.org!

Sweet Hayley, we love and miss you.

Thursday, July 26, 2012

Sweet Hayley Randell

Hayley Randell, a PKS sister of Lucia, lost her fight with heart complications on Tuesday and went to Heaven at the wee age of just 4 years old. Although we didn't have a chance to meet you in person, you and your family were so close to our heart, Hayley. You most definitely earned your wings sweet, sweet girl and you now can fly...for eternity.

message from Hayley's mom, Anna.

My dearest PKS family. It is with great sadness that I have to tell you that our sweet Hayley bird left us yesterday. She gave us four years we will never forget but her heart was just to full with the love from around the world and couldn't fit any more. We wish that you had gotten to meet our little angel but also know that you have in each and every one of our PKS kiddos. You will be part of our family forever and one day when we are strong enough you will find us at a Face2Face conference do that we can finally meet you all.

With love and sadness. Anna

Our hearts ache for the Randell Family in Canada- Anna, Grant and and big brother Morgan. Such a beautiful little girl, an angel. Fly Hayley Bird, Fly! Spread your wings and FLY... And as Amber Holmes said, "Heaven is SOO lucky to have you."

Tuesday, July 24, 2012

Goodnight Nana...and more

This last week seems so long ago, so much has happened. Lucia's nana, her great grandma, June Claudine Dawkins passed away peacefully at 88 years old. Thankfully, Nana could not have passed away more perfectly, and she could not have been sweeter to Little Lu or any of her grand or great children. Nana would hold Lucia, and over and over state how beautiful she was, and she was quick to tell her husband of 64 years to hold Lucia better, if needed, or if she thought she needed a blanket.. She was a mom, a loving woman, wife, grandma and great grandma, and classy woman through and through. We love you Nana and will miss you so much. And we promise to take good care of Poppy!

Lucia and her great Nana last week

And then, the next day a horrific and unimaginable movie theatre shooting happened less than 10 miles from our home. Reminders that life goes by fast, and can end in the blink of an eye, for fair and unfair reasons. We work on therapies, and Jason works on work, and we live our days happily but maybe not always to the fullest. BUT, since we've had Lu they are more full and we cherish the little things, and count our blessings..but we can always do that more. So thankful for the here and now.

And now we are so excited to announce the Second Annual St. Lucia White Party benefiting PKS Kids! This year we'll have Pura Vida Fitness Club by our side as a sponsor and maybe a few more. Elyse, Kim, Laura and Megan and I have started our meetings and are so excited to plan a fun night-CAN NOT WAIT!!! www.stluciawhiteparty.myevent.com Tickets can be purchased on the website or donations made if you would like to contribute but can't attend.

Let's get this party started! September 28th!

AND I have to say a special thanks to all the little girls that sang, held, and loved on Lubird tonight at the Cox house! 5 girls wanted to hold and sing to Lucia, they took turns, and they were so sweet to her. They even gave her 2 of their stuffed animals before she left. Jason and I were talking about how beautiful it was to watch Lu get all that love, the center of attention, and he said, "do you think they know that there's something different about her?" I said "no, that is what makes kids, kids!" Thank you girls and the boys tonight for being kids with our baby, Lu! And thank you Rico family for a fun Friday night- was so great to meet Benny and see you!
Soooo thankful for the here and the NOW!

Monday, July 16, 2012

Wait and see

Oh little Lu, little Lu, how we love thee little Lu! She wakes with a song, awwwwww, her daddy swoops her up from her crib and brings her into our bed, she drinks a bottle, she sleeps, she wakes and looks around. We practice some sitting, do some tummy time, she eats, she naps, she looks around and the day continues...We would love to see a smile or two every day or so often but she shows us her happiness with song or just by opening up her beautiful eyes so they shine bright. Little Lu went back to her eye doctors today and after her exam we were given the same news..nothing we can do..we'll just wait and see..and hopefully she will see more. Her diagnosis is cortical visual impairment and delayed visual maturation..so structurally they look fine, the picture is just not processing like it should. We know she can somewhat see...we're just not sure she understands what she can see..the processing signals may get confused or lost from her eyes to her brain... She doesn't turn to the Dr's light, she closes her eyes tight when he tries to look in. We will wait and we hope she will see..see more. See all the beautiful and fun gifts she has been given, see her cousins and grandparents as they tenderly look over her, see delicious foods that she may one day like to try, see the dogs lick her face and toes...and we mostly pray she can see, really see, the love and happiness in our eyes that SHE, our little Lubird, has created. She looks deep in our eyes, we connect, she tracks..it's just not all the time and we don't really get that giggle, smile reaction that we would love. BUT the deep look is beautifully breathtaking and so blissful.
So, we can wait and see but there is really isn't anything to wait for...we will continue to show her the world as we would if she could see ...swimming in the pool, swinging in the park, vacations any and everywhere we can, even IMAX movies, and one day she just might see something that really trips her trigger, strikes a cord, tickles her fancy! Oh little Lu, Little Lu, oh how we love thee Little Lu! You have shown us so much in your little life already, we will show you the world, regardless of any medical diagnosis, we will show you everything and anything we can. I often think, if we lived in a remote village in Africa, or if she was born 100 years ago, we wouldn't really even know what was wrong..we would just SEE! Little Lu, Little Lu, we love THEE!!!!!
Thank you Mario and sisters for the nice Sunday evening-a new toy piano and a beautiful fancy dress!

Mario's sisters loving on a hungry Lu- Irma, Dee, and Maria

Little Lu, Little Lu-LOVE YOU Little Lu!

Sunday, July 8, 2012

Discharged!

Discharged. Little Lu has been discharged for Private Duty Nursing. Angela Becker and Darlene Wolff have taken care of Lucia for the last 8 months between 1-4 days a week. They check her vitals, feed her, give medicine and shots when needed, monitor her oxygen levels with the pulse-oximeter machine, they love on her and they give Jason and I a peace of mind knowing that we have nurses in our home, watching over our precious Little Lu. Last November, when they started, Lucia had 6 g-tube feeds a day, 2 inhaler medicines every morning, 1-2 medicines added to her button, 2 vest treatments, constant monitor on pulse-ox machine, many doctor appointments, suctioning and more. BUT now...she has been discharged from the state. Lucia no longer qualifies for in home/private duty nursing. Why you ask?! BECAUSE she is doing SO WELL! I have not shared this much, because I didn't want to get too excited too quick, but she has been taking ALL of her food by mouth. We have done less than 5 tube feeds in the last month! Our Lucia has been drinking her pediasure formula down down down! Why else would she not qualify for nursing...she has not been on oxygen during the day! So as nice as it was to have nursing, was VERY very very nice, we can't complain that Lucia no longer qualifies. She is, after all, our beautiful, FULL bottle drinking baby, 1 easy medicine a day, and oxygen free during the day baby...equating to a getting-stronger Lubird baby-HIP HIP HOORAY! GO LU!
And this week as we say good-bye to our amazing nurses, we also welcome a new therapy. As a parent you will try anything to help your child to their fullest, so we are branching out and trying a new therapy method called ABM, named after the the founder, Anat Baniel. Our friends, the Richtors, had their special son, Shaw, try it and seemed to have positive results...so why not give it a go! This week we'll do an immersion of 6 therapy sessions and hope and pray for the best. The method focuses on a different way of communicating with the brain through movement and stimulation. This technique is supposed to 'awaken' the brain to trigger the person to want to move more.. At our initial consult last Thursday it looked like a mini massage, so at least it should feel pretty good to our little girl. Going in with an open mind...we'll give it a go!

Our thoughts and prayers go out to Megan Gilbert's dad, Wayne, and to Jason's grandma, Nana to both stay strong during this trying time. And River dog and Mesa, we say good bye to you, two VERY special dogs to very special friends.

Thank you mom and Kim for a great weekend in Boulder- Lu and I had so much fun! Thank you Lee and Darren for your weekend away with Jason- he had sooo much fun too! And THANK YOU so many for purchasing Lucia light t-shirts, with all proceeds going to PKS Kids! Over 60 shirts sold in 6 days-INCREDIBLE! THANK YOU!!! The sale price is still listed above, $17.50 instead of $25 and the sale now ends on Tuesday. Mens and Womens shirts with light in different languages..our Lucia, our light!

Monday, July 2, 2012

Love Is

giacomo and lucia sweetly swinging side by side.

Oh Giacomo (gee-aw-ka-mo, said quickly in an Italian accent) Giacomo, where for art thou? Lucia brought home her first boyfriend and wouldn't you know he came all the way from Bologna, Italy! His mom, Samantha, and her sons, Tomas-age 13, Matteo-age 3, and Giacomo-age 1, made the trip from Italy for the PKS Conference and then we were sooo happy to have them visit in Denver for a few days. Samantha and I have been in touch for almost a whole year, learning of our newborn's common bond of PKS. She has made me feel so blessed to have her as a friend, although all the way in Italy, she has seemed close by. Giacomo has been courting Lucia from afar with personalized facebook messages, piano playing skills, and all the while looking very dapper, not to mention he is very strong and smart! Time for me to brag about my son-in-law...:) At just a year old Giacomo is able to sit for a bit unassisted, he has great vision reacting to faces and toys, he can play the toy piano, he can hold his own bottle, make consonant sounds, and overall he's doing really well. Samantha too can sit and see :) and she's funny, sweet, smart, beautiful with words, a beautiful person inside and out. She and I have been planning the engagement of our children and after Lucia's and Giacomo's time together, I think its very obvious that they are a perfect match. As Samantha said about the above swinging picture, "Love Is" and that could not be better put.

Thank you Mario and Linda for hosting a beautiful, Italian style, dinner. Thank you mom and dad for opening up your home for their stay. Thank you soooooooo much Samantha, Tomas-such a good guy you are Tomas! , Matteo and Giacomo for this visit..i wish it didn't have to end. Samantha, thank you for your emails and intuition of the relationship...it proved to be a grand idea! Thank you for being a new and old friend that we WILL also visit at your home someday. You are a FOREVER friend...it's pretty incredible how God works!

Here is the rendezvous of their time in Denver! LOVE IS!!! XO