One year to the next...

swingin in her pink swing from reese turnipseed

One year ago today was the day before Lucia's big day to have a g-button/feeding tube placed, stomach surgery, many tests, and many unknowns.  There are still many unknowns but one thing we know is that she has learned to safely drink from a bottle and she loves it!  She cries like a hungry baby when she is hungry, and burps like her mama when she is finished and it makes me so proud!  We still use her g-button for about half of her formula intake but you have made GREAT strides, Little Lu!  The oxygen tubes, pulse ox machine/alarm, g tube feedings and a few other devices have become our norm.  BUT when she's oxygen tube free, and drinking from a bottle-that is a norm that we have gotten a sweet taste of lately and we pray those sweet strides continue to go up, up and someday- all the tubes will go AWAY!

This year, instead of surgery, we had a pretty big therapy day-although no therapies.  Lucia had an evaluation from her Early Intervention Team, the team of therapists that work with Lu and help her and us so much.  These evaluations are done to assess the child's development,  see if goals have been met, make new goals, and also to do a state required labeling of the child's age, according to their actual development.  Labeling schmabeling,  but it is required...So, when it was time, I waited with a hopeful ear that she was above 1 month age, just please be past a 1 month old,  for most or everything and she was! I know that doesn't sound like much but it is to us.  I listened to her therapists, who are also now dear friends,  as they sweetly and a bit hesitantly would say their opinion...2-3 months in this category, 2-4 months in that category, 3-5 1/2 months in another and on and on! It's not 13 months as she is, but it's not 1 month either.  The only time I felt a lump in my throat was when I had to sign some papers.  The first sheet was about her age appropriate assessment.  Based on her "scores" she was in the severe category of the severely delayed category, the last possible column for delays.   We know those labels don't matter, that they don't take many things into account, but it still hurts.  It hurts because she tries so hard, it hurts because she is just a 1 year old baby and it hurts because it just does.  But,  it also makes it not hurt so much because she does try so hard, and because she IS just a baby!  And when the tests scores are handed out what does it really matter anyway?  The touch of Lu's sweet chubby feet, the grasp of her tiny fingers around yours, her beautiful big and curious blue eyes, her sweet songs and her happiness.  That is what matters for Lu. We are on our time, with our own beautiful shining bird! Onward and upward, right Mario?!  Indeed.

Thank you Kimmy, Courtney, Laura, my dad, Henry, and Lubird for a FABULOUS weekend in Seattle!  Thank you Mom for helping in Denver so we could take this trip!  Thank you Kristi Braskett for the nice birthday card, and thank you so many, for all the wishes.  Thank you sweet husband for the welcome home b-day dinner feast, and thank you Lu for scoring a perfect 10 in my life, and being the best birthday gift I could ever hope for!  Weeeeeeeeeeeeee happy birthday to me!!!! Life is good.

Lucia ready to eat-  bib from her friend, Isabella Turner

Seattle crew!

Seattle Sea Plane- thanks Bill Cahill for hooking us up!!!

inside quarters of the seaplane

Butch and his sidekick, Henry!

yum!

kimmy, courtney and Butch with a giant order of desserts

my girl!

and andy's b day dinner last week with his sweet girl, Nathi and lu admiring the artwork on her cast. 

Casting Call!

watch out! here i am with my big cast!

One week into wearing a very heavy, and big, and very, very heavy cast,  Lu is doing just fine.  The first 6 days were rough, so much so that I had moments of remorse.  Was this the right time? Will this set her back with her therapies, will she keep hitting her head....will she be able to fall asleep during this long month?  The nights always seemed the worst.
Lu has had her falling asleep ritual, for the good part of her 380ish days of life.  Swimming in the bath with mommy, followed by daddy putting on her pjs after a nice little lotion massage, mommy reading squishy turtle book,  then turning on crib entertainment and watching over her baby girl as the grand finale ritual begins. Lu's two hands meet at her chest, holding, grasping, intertwining her fingers for about 30 seconds, and then, with fully stretched out little arms, she raises her intertwined hands to her forehead, closes her eyes and soundly drifts to sweet sleep.  Throw a very heavy cast in the situation, that fully covers a hand and arm,  and you're left with a sad Lubird...no bath, and no hand holding grand finale to soothe her to sleep.  BUT around day 7 she is grasping her cast and figuring out how to not let it hit her head.  She is such a good, good girl.
We had a little photo shoot aka casting call in our backyard.  Here is our little Lu in action with her cast.

left arm is like a heavy anchor

stretching out those toes and legs..cast is brought into mid line

 leg tuck and the cast is swiftly moved again 

reaching for toes and still weighted down by my cast

a lil roll- i guess i'll go where this heavy cast is...

with the bumbo, i can use my anchor to help stabilize!

Despite the heavy cast she really is doing much better.  Little Lu you are so sweet and we know this cast is NOT a TREAT!

Our prayers go out to two very special boys this week.  Kingsley Larson-fight this pneumonia little Kings! And today, I met a mom of a 3 month old PKS boy that was born in Denver.  This little boy is having a very tough time and has been in the hospital for almost 2 months....we love you already little Jeremiah and you and your family are in our prayers.

Thank you Hammonds for Lu's cute dress above!  Thank you Courtney and Jeremy May for raising money for PKS Kids in lieu of birthday gifts for your 3 year old!!! Thank you little Lu for being such a good sport with your big cast! Only 19 more days left

Lu did great!

So...short story short...Lu did great with her surgery!  

Whooooooooooooo Weeeeeeeeeeeeee 

Tweeeeeeeeeeeeet Tweeeeeeeeeeeeeeeet!

Tweet!

We had one change and that is that Dr. Laurel Benson could only do one finger separation at a time, so we'll have this procedure done again, probably in the fall...But Lucia passed her hearing test, checked out on her other check-up and did well with the procedure and recovery!  And now, with some pain meds and a bit of situating to make her comfortable with her heavy cast... Lucia and I are cuddled together in her hospital bed for just a short 1 night stay.

Thank you for all the prayers, messages and love! I continue to be amazed at the love surrounding little Lu!  She really does shine so bright!  Thank you! God Bless you Little Lubird and all of You!  I'm off to enjoy my little bird...

morning of surgery

sweet fingers

little bird in a big room

Recovering...amazing Dr. Benson is an amazing artist too! a blue bird!!

and winning shot again...2 hours after surgery

Good Night!

I am a mom

Happy Mothers Day to my mom, my mother in law, my sisters-in-laws, and to all mothers of the world, including me!

I am a mom

I am a mom to a little bird

a bird that may never be able to call me mom

a bird that may never be able to walk by my side and hold my hand

a bird that may never be able to pick flowers for her daddy

a bird that may never be able to be a mom

I am a mom to a little bird

a bird that will say the word mom by just looking into my eyes

a bird that will walk me through life by showing everything in a brighter light

a bird that will teach me to stop and smell the flowers, the big and small

a bird that will make me a better mom than I could have ever dreamed I'd be

I am a mom to a little bird

a bird that has caused me to feel more love than i could have ever imagined on mothers day

I am a mom to a little bird

I am a mom to a beautiful little bird named Lu

thank you Lu, for picking me to be your mom

I love you my Lubird! 

Her pretty hand

Little Lu has a little hand.  When Lucia was born,  she had a few 'markers' for being 'special'.  I pushed and pushed, as mamas do,  and when she finally arrived, she did so without making a sound.  Her left arm and hand were pressing on her neck, making it difficult for her to breathe, and her hand was not only pressing but it was different.   After the medical staff resuscitated her, they brought my baby girl to my arms, for me to meet for the very first time, face to face.  I remember thinking that she was perfect, beautiful, and a girl!!!, our beautiful baby girl!  With Jason beside me, he was also ecstatic but he was also concerned.  Having been in labor minutes before, and with an epidural to help, I was slightly (HUGELY) out of tune with the whole scenario.  Anyone seeing child birth for the first time knows it's miraculous but also quite scary, even when all is totally perfect and smooth!  He saw that, plus our baby not breathing, he saw her skin tone turn blue before his eyes and he also saw her different little hand.  A tiny little hand, with the three center fingers attached, fused, webbed together.  It didn't bother me in the least or concern me at that moment, not one bit.  A beautiful baby girl, with one little different tiny part, no big deal.  We soon realized that her hand would reveal a lot more about how very 'special' she really was.

Our first specialist appointment after Lucia's diagnosis was with a highly recommended orthopedic surgeon, specializing in hands, Dr. Laurel Benson.  At the time, Lu's left hand was our biggest concern. We knew she would need to get her tiny hand 'fixed' so it could be used to its fullest and so she would look 'normal'!   But shortly after seeing Dr. Benson, other serious medical complications fell upon Lu,  and her hand quickly became the least of our worries.  In fact, we fell in love with her special hand. We call it her pretty hand.  Her right hand is much bigger, with cute chubby fingers, her 'football throwing hand'-(that goes out to my grampa Kirk).  Her left hand is petite, delicate, a tiny scoop, and in our eyes, one of the most precious things we have EVER seen, touched, and held.  But, we know she will use it best if it's fully functional and the time has come.  Next Monday, May 14th, our litte lu will have her big operation for her pretty little hand.   A 6 hour surgery, ugh, to separate her fingers, followed by a 4 week cast.  I'm not looking forward to it, but her fingers are starting to grow a little less than perfect.  It's time.
I'm sad, I'm scared and I'm so in love with my girl named Lu with her tiny pretty hand.  She will be under great care with Dr. Benson and the little bird will be better off.  While under anesthesia, her audiologist will also do an ABR/Auditory Brainstem Response (in depth hearing test), they'll examine some other areas of concern and they will send a skin biopsy to CHOP (children's hospital of Philadelphia) to be analyzed as part of the PKS research program.   Lu's leaving her mark!
So...this week we are seeing quite a few doctors..1 year appt with pediatrician, an EEG to look for any seizure activity, another general surgeon AND we are taking LOTS of baths!  Lucia won't be able to take a bath/swim for 4 weeks!!!!!!!!!! I'm beside myself on that one..so tonight and the rest of the week, I plan to take baths together to the point of being wrinkled prunes. Jason and I also plan to do a lot of hand holding with Lu!
Thank you Mollie Andersen and family, and the O'Donnell family for your donations to PKS Kids! Thank you Caroline Hammond for joining us for a PKS gathering on Sunday, and thank you Elyse, Megan, Laura and Kim for helping prepare for the second annual St. Lucia White Party, which will be held this fall!!!!!
Shaw Richter, you stay strong for your surgery tomorrow! We are sending our thoughts and prayers to you, little warrior!!!
And Little Lu, thank you baby girl for sharing your tiny, pretty hand with us. We love it and you so much!!!

Celebrating Lu's First!

I'm 1! 

A little card from Karen and Eric Tscharner that i liked:

"for a sweet girl who's 1!

Your very first year's been a wonderful one...

you've brought grins and giggles and oodles of fun!

so make any wish in your sweet little heart,

blow out that candle and let the fun start!

Happy 1st Birthday!'

No doubt it has been a wonderful one and her celebration was the same...
hmmmm I'm gonna keep on rhyming and hopefully it won't be lame.

The celebration started out with family cuddles, oh our sweet Lu.

The day continued and we loved on her through and through

Onto the evening to celebrate at an italian eatery

with my family, the huffs, at a place called pas-qui-ni

We drank wine and toasted to our little girl

Pizza, gifts and a special hat to wear with her hair full of curl

Friday grammy helped prepare for the big par-tay

crafting, cutting, taping, for Lubird's special birth-day!

Saturday's sky was blue and the sun shone bright

a beautiful day to celebrate our Lucia, our Light, 

A pinata, painting station, cocktails, and cupcakes

Kids, old and young seemed to enjoy and partake

We will ALWAYS remember our Little Lu's special day

she tasted cake, and felt the love in a HUGE, HUGE way!

Thank you family and friends for sharing your light with our light! 

We love you, she loves you, it was all perfect - day and night!

now for some pics! lots of pics!

Thursday, April 26th

uncle Joey

b-day girl in hat from Bobilya's

grammy and birdie

andy and nathi

CAKE with cousin Hudson

mmmmmmm

kinda like this stuff

my family

charley!

girls!

marco!

Saturday, April 28th- the big birthday bash!

Girl Party-lu loves pink!

katy, lu and tate

larah and lu

amy, laney n lu, after hours

parents and lu in her beautiful new dress from grammy

pinata explosion!

moms, and check out the bottle drinker!!!!!!!!!!!

mom

tate, keri, greta

becky, noni, andi

zach, summer, amanda plus baby in belly and scott

jillian, hanni plus baby in belly, sarah and lincoln

tate, lu, me, keri, greta, ivy

another cake Lu! Hanni, Rhoda, Phoebe, Jillian

help from Payton

yummy i think?

:) 

eileen and john

kids corner

tonya and huffs

christopher on left! gretchen and lu

hudson is proud!

lisa priest and tonya

b-day girl taking a break, love this pose!

nathi, charley and uncle andy

my most favorite!!!

traci, caroline and lu!

Andersons!

fam shot

peeps!

painting station

the day after...

What a wonderful way to celebrate our most special little girl.

Thank you!!!

Thank you for so many gifts for Lucia and your friendship!!  Thank you Sandra Bornhorst, Aunt Vicky and Uncle Rod for Lucia's Birthday cards! Thank you for some online t-shirt purchases- Ian Kitteringham, Aunt Dawn Kinsey, and Karin Shipley Calland... Thank you Amy Hootman, Bill Padula, Shanna and Glen Camuso, Trish and Blane Versaw for your donations to PKS Kids.  More thank you's to come.

And lastly, our prayers go out to my aunt Peggy in Ohio. We hope you feel better very soon.