happy camper!

happy camper lu!

We're so proud of our little camper this week- Go LU!  Our prayers have been answered and she is not sleeping through the camp-only during snack time and a few little minutes here and there.  Overall, she is being pretty alert seems to be enjoying herself and her new friends!  There are 3 other little girls in her group, they all have Downs Syndrome and they are so so soooo cute and sweet.  Here are a few pics of her first little Adams camp experience.

lu teaching the class

music therapy with Jennifer Barker- she's amazing

classmate- Riley!

music at beginning and end of camp-showing all 4 therapists and all 4 little campers plus some siblings

Tomorrow we have two more days...lucia is babbling in her nursery...go to sleep little lu..2 more big days coming up!  night night

Thank you Brenda Allerton for buying a Lucia Light shirt!

A room full of love

Hammond's with Christopher and daughter, Carly, Larson's with Kingsley, and Miles and Beth Bishoff

Our little Lu is almost 11 months old (will be on Monday) and the little Lubird is experiencing so much, as are we, in her wee little life.  This Saturday, we had a BBQ at the Larson's house and as my dad said in response to the picture above, it was "a room full of love".  4 kids all with special needs and special they are.  Christopher and Lucia both with PKS,  Kingsley with an undiagnosed condition and little Miles with Menkes Syndrome.  We all met at least one new family and we all loved on each others kids.  4 g tubes, 4 with oxygen, amongst other problems, and all 'just little humans that need to be loved' (geneticist Dr. Bellis.).  It was so sweet just watching these little ones look around, grasping their hands, telling their little stories, and not one single cry all night.  Wow, i just realized that not one of the kids cried, not even one time!  It was nice to be amongst friends like this, and to know that your child was not different in the way that you may feel sometimes.

Thank you Summer, Zach and Kingsley for hosting this special gathering.  We all hope to do this every month.

In other exciting news...Lucia, our little Scout,  is heading to camp on Monday!!!  Adams Camp,  www.adamscamp.org, is a week long intensive therapy program for kids that need some extra help.  This Adams Camp is an Early Start program (ages 4 and under) and it goes from 9AM-12PM Monday-Friday.  I'll stay on site during the hours and I pray, pray, pray and our little girl stays awake to get the most out of it.  4 Therapists (PT, Speech, Music and Occupational), 1 volunteer, and 4 kids, per group.  This Adams Camp only happens 2x a year-March and October.   I told the physical therapist (assigned to Lu this week) that although I do believe in miracles, I'm not expecting miracles, (but if one happens-bring it on!), we just want to do what we can this week.   Our goals/focus are: sit and roll on her own, lift her head while on her belly, and work on her eating.
Regardless of how far she gets with her goals, every little bit helps.  Maybe they'll figure out a technique to help her improve her muscle tone, or introduce a toy that she'll want to reach for, or uncover tickle spot that makes her giggle and move more, or they'll just discover a way to help her coordinate her skills.  We know she has some mad skills, we just need to help her express them!
Lu has been tending to sleep during many of her therapy sessions-especially the mornings, so I'm just asking God that she is alert and able to have tons of fun this special week!
Thank you again Larsons for Saturday night, thank you Keri Finch for telling me about Adams Camp.  Thank you Shanna Desch, Rachel Brand, Tate Foster, Naomi Trojanowski, Andy Hicks and Nathi Mattos for purchasing Lucia Light T-shirts! Thank you Lala for giving Lulu her first mani/pedi!  Thank you Noni for a new spring dress and grammy for lots of toys! A BIG WAY TO GO to Shelby Holmes (PKS age 3 1/2) for taking her first steps in her walker!!!!!  And congratulations to the Shreiners on the birth of their new baby boy, Witt!

lu checking out her pretty new manicure!

Three legged gidder

my little lu

It's been a beautiful week in Denver and my friend, Keri Burnette, invited me to go on a walk or hike this Saturday.  So with my two dogs, and my little girl, Keri and I went on a walk from her house around Washington Park- a park that is abundant with energy on any given decent day in Denver. Bikers, runners, walkers, and their dogs and children, strolling, exercising, talking, and enjoying life.  At one point we passed a man with his two dogs, one of which was a poodle-like, cockier spaniel type mix.  This little dog was cruising along with its owner and the owners other dog looking as happy and fit as the other except this little dog was different, it only had three legs.  The speed, spirit and joy of this dog was so beautiful!  Keri looked at the dog and said to me, "aw, a three legged gidder!"  I smiled at the spirited sweet dog and questioned what a gidder was.  She replied "a go getter, get it done, a gidder!"  She then said, 'Animals and kids,  they don't care they just get er done.  They don't know they are different, or unable, they just get it done."
If we could all just be 'gidders', not comparing ourselves to others.  If I could just do that with my little special girl, and remember that every day.  Every moment that I get sad..it usually is because I compare her to others.  I could be out and see a child close to Lu's age learning how to walk, or I could just hear a song about a 'girls first kiss' (little mermaid), and I may break down thinking how my little angel may never have those experiences.    I do get sad and I do get down and it usually is a pattern of comparisons.  And shortly after my downtime,  I look over and see my little Lubird and she makes me so happy it hurts.  She doesn't compare herself to others, she doesn't care, she will be a 'gidder' and get er done to her fullest.  And her fullest is her fullest and no one else's.  I know I can learn a lot from that three legged gidder and my special little Lu.  I learn something every single day.
Happy 1st Saint Patricks Day Little Lu.  We are so lucky to have you as our spirited and beautiful little girl!
Thank you Lucy and Lizzie for the beautiful card! Thank you Katie Fondriest and Linda Glesne for purchasing Lucia Light T shirts.  Thank you Sandra Bornhorst for your wonderful facebook message.  Thank you Lizzie Gold's dad for visiting us on Tuesday! Thank you dad and mom for a wonderful visit.  Thank you dogs everywhere for your spirit! Thank you Keri Burnette for the walk and words today!  Thank you Lu for being YOU! I feel so lucky to be me.  Gidder done!

Keri and Lu- pants from lizzie bobilya, shirt from flemmings

david gold- lizzie golds daddy!

daddy and lu on st pats day!

Good friends- Megan and Otis Gilles

she slows it down

As Lucia gets stronger, as we get stronger as parents, our days and weeks go by faster.  I like to think of this blog as a little journal for our Lu.   Maybe we can read it back to her someday and she can look at all the pictures of growing up, the friends she's met, the love she's received from all over, the progress, the ups and downs, and just her little journey.  As time does go by fast, its always a new day with Lu.  Like on Thursday, Lucia had a physical therapy session with Becca and she beared weight on her feet for the first time!  When we've held her up before, she lifts her legs up, avoiding contact with the ground, avoiding weight, avoiding the thought of standing or more.  So Thursday, March 8th, 2012, Lu beared a bit of weight on her sweet legs.  So happy.  What that means, not sure, but it was great!
Thursday also marked her 3rd visit to the Anchor Center and every time is a bit different.  Every class we do something new and we have yet to be with the same group.  Syndromes, undiagnosed conditions, born without eyes...all the little sweeties are carried in with love by their parents of all walks of life to play and explore and learn how to see and discover life through their special eyes.  I love going...and I think Lu is loving it too!
We also follow facebook and the pks kids website to see how the other pks kids are doing..and every single day we are overjoyed by a picture or comment about one of the children.  And almost every single day we are also saddened by a concern, condition or issue that one or many of the children are facing.  Life is tough and when its a child it just seems unfair.  But one thing that seems to be sure is that although time does go by fast, it seems to go by slower with a special needs person around.  I tend to stop and smell the roses, her roses, more.  I place a toy in front of her face slowly and don't say a lot of words when I'm looking to make eye contact. Lucia prefers to take her time, and she is teaching us to do the same.  She has slowed our life down and we love it. What is the rush anyway...we are most definitely not in a race.  I want her to stay our little lubird, able to be carried around our arms, able to fit in the tub with me, able to sleep on my chest, able to get back rubs from her grampa,  able for her daddy to hold her and dance to music....but she is getting older..and bigger and stronger every single day.  She even sat unassisted in her bumbo for a few minutes this week...and took some swallows from a bottle!
Way to go Lu, we are so smitten by you, and we love holding your hands.  When you do get bigger, as you must, I pray that we can hold your hands and walk with you.  But don't you worry, we will carry you if you need it...and we'll take our time.   It was a good week, a really good week for Lucia.

We are sending thoughts and prayers to special family friends whose 4 year old grandson was just diagnosed with Leukemia.  He's in great hands and will get better but I'm sure its a scary time for him and his family.  Our thoughts are also with you, Caroline, for a good week ahead!
Thank you Brandy Brown & Brooke Turner for buying Lucia Light T-Shirts!  Thank you girlfriends for a special last weekend and thank you special needs people all over the world for slowing things down a bit in this crazy fast world.
And this week we have a VERY special visitor...Lizzie Gold's daddy is coming to Denver on business and will be coming over for dinner!  Lizzie is Lu's best friend from Minneapolis, born just days before Lu with PKS too!  Can't wait to meet you David!

girlfriends

First day of school

Lucia started at the Anchor Center, a school for blind and visually impaired young children, on Wednesday.  It was very special and exciting!   Our little Light has lots of lights to look at, many objects to feel, and lots of new friends to share the experiences with.  The Anchor Center is remarkably less than 2 miles from our house, and I've driven past it several times in that last few years.  I remember thinking how neat, beautiful actually, the school looked.  I don't imagine that I hoped to have the need to go there, but I do remember thinking that it seemed like a very special place.  I had the urge to visit it someday and see what went on inside...  Going there on Monday for Lu's evaluation, it felt right.  I felt like we were just where we were intended.  I felt at ease and truly excited for my daughter and the road she was about to embark at the Anchor Center.
The infant program (age 2 and under) is Mondays and Wednesdays from 9:30-11AM and we are free to go as much as we like!  Wednesday was our first day and we learned quite a bit.  We learned how to hold her little hand on ours to introduce new objects, where we can go if we need to feed or rest, who teaches what and in which rooms, and we learned about other newly enrolled babies and a bit about their story.  One little boy has a syndrome with chromosome 13, another boy has hydrocephalus (water on the brain), and another, a little girl, was born prematurely at just 26 weeks and has brain damage from bleeding on her brain.  It was beyond sad to hear just a little of her condition.  Days of not sleeping, only crying for 4-5 days.  4-5 days straight, and the mom not knowing why.., being a single parent, young, alone and desperate.    I felt so lucky to have our little Lu looking around, moving her arms and legs, sharing her little noises...so blessed.
I hope and pray, so much, that Lucia will be stimulated and inspired by the Anchor Center, and I think she will.  I hope the same for the other children there, especially that little girl.  As a parent you will do anything, anything possible to give your child the world...and when you feel helpless, I can't imagine a worse feeling.  Maybe with all the help and support we've been given with Lucia we can help that mom in some way, even a small way of some kind...we'll get to know the families more each week.  We're so grateful for the Anchor Center, our proximity is truly a mighty blessing, and I feel that they make dreams come true.  Even if those dreams are just to teach your child to reach, or hold an object, or communicate , or not to be upset, or smile...having your child light up with happiness is the best feeling in the world.  The Center is there for those reasons and the women that work there exude happiness and love.

Little Lu in the 'little room'

little room with a little bird

some of her little classmates and their moms

manuel and lu

lubird reflecting on her first day of school!

Thank you Mike and Nicole Raiff for your generous donation to PKS Kids!!! Thank you Marvin Fete for purchasing another Lucia Light T, thank you Truly McCabe for new pj's, thank you mom for Lubirds' beautiful new blanket, and thank you Anchor Center for being there to help children find their light!  We can't wait to go back next week..