An anchor in sight

We visited the eye doctor on Monday, the third time Lu has seen this doctor.  We've known her vision is not typical but we were hopeful for a good report.  It wasn't awful, and it wasn't really good, but we have a place to go that can hopefully help.  She sometimes makes eye contact and she will look at us and smile, but it's not too often and it's only at certain people (usually me :) )  and certain lights and colors..  So.. after examining her again, her doctor suggested that Lucia visits a special place, The Anchor Center.     The Anchor Center, for blind children, but blind, as our doctor pointed out, can also mean visually impaired.  We can see that Lu can sometimes see and if this school can help her reach her full potential, that will be beautiful!  We're really excited to get her started and find ways to make our little bird soar with her fullest sight!

On Saturday, we had lunch with the Hammonds, the PKS family that I met on my God Appointment..  It was so nice to connect and talk about their experiences..poor little Christopher has been through so much.  He has a list of problems-head to toe, but the saddest thing to us was hearing that his lungs are very, very fragile so their pediatrician has told them he shouldn't even go to school because he's too susceptible to viruses, that will turn into pneumonia, which can be life threatening to little Chris.  There's no doubt that the Hammonds will be in our life for a long time...and a lot.  How about this side story..it gets a bit confusing but here goes..  My brother Jon, in California, sent a fun package a couple weeks ago, covered with alien stickers, to my brother Joey's kids.  When Christopher's dad saw Kim at our lunch on Saturday, he remembered delivering the package (Kim had signed for it).  HE had delivered it to their house, as the Fed Ex man.  How about that..6 degrees..more like 3 it seems!

So..tomorrow we have another hearing test, and in the upcoming future another sleep study and overnight EEG.  The neurologist is not convinced that all is clear in the way of seizures from that last EEG-sigh.  But we'll cross that big bridge when we are certain we need to!

For now we try to see with those big blue eyes, smell the baby bananas that we'll let Lu taste tiny bits of, and we'll cover her and do photo shoots with the beautiful blanket from AnnaRose Zapata!  A blanket of bright flora, with her named embroidered on it too!  It is a perfect Lucia blanket- thank you AnnaRose, Katie and David Zapata for those thoughtful gifts!
Thank you Rhoda for the cuddle bunny and thank you Coco for organizing a great gathering last night.

lu cuddled up with her new gifts

God Appointment

Queen Lu in her crib with her Court

This week started out pretty uneventful (which is very eventful for us compared to last year..)- a couple doctor appointments, some in home therapies, some dress-up sessions,  and good moments with little Lu.  Lucia's EEG on Tuesday came back looking good from Neurology- no signs of seizures on the small 30 minute test- AWESOME! Nine month appt at pediatrician, all looked good on their end.  Two therapies sessions and Lu was awake and active and even took a few swallows of food!   Then today, something quite extraordinary and extremely eventful happened.
I had just finished a yoga class with my out of town friend, Aimee Beatty, and we were walking to grab lunch as we passed a mom with her two kids.  I watched as they went into Cold Stone Creamery.  The little girl walked in as her mom pushed her handicapped son in his wheelchair.  I watched, with a different eye than I would have pre-Lu, and said to Aimee, "i wonder if that is what Lu will be like".  The boy had a look about him.  About 5 minutes passed and I told her I wanted to go meet that family and introduce myself- she encouraged me to go and pushed me out the door of Noodles and Co.   I was happy when I saw the family out by the fountain and walked over.  "Hi, i have a baby girl and she has a syndrome and I see that your son may have something going on and I just wanted to meet you."  The mom replied,  "He has a very rare syndrome, 1 in 10 billion or something and it's called Pa".  I stopped her and ended her sentence.  "Pallister-Killian Syndrome.  That. Is. What. My. Daughter. Has." We stared at each other in disbelief, we cried and hugged and kneeled by her son, and talked a bit about everything.  She lives less than 1 mile away from us, and literally one driving turn away. She lives just blocks away from my brothers family. What are the chances?!!  We exchanged numbers and are meeting up this weekend.
When I told Aimee, she told me it was a "God Appointment".  Her mom calls incidents like those, the perfect time at the perfect place but part of The Plan, a God Appointment- and it was.
Christopher is a 7 year old boy that is on oxygen, has a g tube, and unfortunately has many other complications. And he was CUTE!  His family has never met another PKS child or family.  Today was a life changer, a God Appointment, and I'm pretty certain a beginning of a friendship, like no other.
Jason and I are excited to get to know this special family much better and learn from them, their daughter and their special son.  Thank you God for setting up this special unannounced appointment.  I know that Christopher and Lucia thank you too...come to think of it..maybe they already knew about this appointment!? Thank you Aimee for coming to town and inviting me to that yoga class and lunch!!!

Happy 9 month Birthday Lubird! It has been a day like no other.  Love you little bird, soooo much.  And Christopher, what a special angel you are, if God is sharing this with you, know that we love you too.

5 year old Carly, Chris, and mom, Caroline Hammond

7 Year old CHRISTOPHER!

Lil Teeth!

Little Lu has sprouted some little teeth!  Two bottom teeth broke ground on Saturday, January 21st! Since Lu's not taking much food by mouth we thought it might be a long time before we saw any teeth, as did some of her therapists, so we were thrilled to see the little nuggets appear!

Despite going through teething, Lu has also been enjoying some tickling and many smiles and laughs and her mommy and daddy could not be more tickled pink by it!  If Lucia can smile and laugh for us the rest of her life, it will be hard to complain.  If she's happy, so are we.

And... after talking to her doctors, they approved a family trip to Mexico in February!  Lu is gearing up for her sunny vacation!

Teeth, Smiles, Sunglasses and a girl named Lu! This week we have our 9 MONTH check-up!  Growing up so fast!  We also have our regular therapies and a short EEG on Tuesday.  AND we have lots of play dates!  Monday with the handsome Garces' twins and Tuesday with the beautiful Truly McCabe.  And Grammy has arrived home from Costa Rica to give Lu and all her cousins some loving too.  A nice week ahead for the LuBird! Tweet Tweet, Teeth Teeth, Tickle Tickle, So Sweet!

Little by little

Our beautiful little lubird has been seen by a lot of specialists in the last couple weeks. Her heart abnormalities have improved-yay!  Her neurologist wants to do a short EEG but was not alarmed by any activity that I reported-yay! And after another swallow study today- she is not yet ready to eat by mouth-little sigh.  

I had a hard time swallowing that- its not the fact that she didn't get the green light to eat orally and lose her button- but we watched her try soooo hard to swallow, to coordinate the process.   Watching her take a bite of yogurt, try to drink from a bottle, food off her pacifier...it was so much work for her and it was like a marathon for our little Lu.  Her tongue moving so fast, and strong, the determined look on her face, her little heart racing.. it just didn't come together as well as it needs to.   The Swallow Study shows us a live swallow using an x-ray and a barium formula that can be seen on the x-ray.  We can follow the swallow from start to finish.   When I gave her the bottle I was reminded of the first month of her life when she sucked a bottle beautifully, until we discovered that she was silently aspirating.  Giving her the bottle today, she was confused by the nipple of the bottle..she forgot how to drink, and it made me sad.   BUT- they said she had improved since her initial swallow study in June and the last one in September..and we'll repeat in about 4 months.  

Improvement is improvement and that is the good news.  Her heart, lungs, neuro activity, no sign of reflux, are all great, great news!!!   

In my yoga class yesterday, the instructor talked about focusing on the process' of achieving something-not focusing on the outcome itself.  The outcome can be overwhelming and not only that, but it can be out of our control.  Focus on the steps and the process, the here and the now...it's not destination its the journey.  The little bites, the food on the little fingers and tiny face,  the sensations, the fun in every moment right then and now!  Tomorrow we'll start giving Lucia little bites again to keep her interested and do one wee bite at a time, little by little..focusing on each little step of the way!  

Thank you Laura for going with us today and thank you Lucia for giving it your ALL! You continue to amaze us.  PS-  Lucia had a first today- a fall off the couch...mommy did not think she was capable of such a big move from the middle of the couch, over her boppy and onto the floor-but she sure as heck was.  No injuries, but quite a fright for mommy and baby Lu.  Once we knew she was ok, it was pretty amazing achievement!   Oh little Lu, we love YOU!

Let's dance!

working on sitting

We are over halfway through our week full of activities and it's been productive, informative, and somewhat inconclusive but pretty good!

Physical Therapy bright and early Monday morning, however, Lu was not feeling so bright that early! Lu slept through over half the hour BUT for the first part she tolerated some tummy time and some assisted sitting.

Pulminology tested/monitored Lu's oxygen levels and concluded that Lucia is doing well on 'room air' when she is awake- meaning no assistance needed from oxygen!  So, Margarita gave us the approval to take off or turn off her oxygen during the day while she is awake, and add back when she is napping or asleep. GO Lubird! She examined her and thought she 'looked good'!  We love those comments from her docs!

Tuesday morning I had my CNA orientation to be Lucia's CNA- so now I'm employed for some of my care for our sweet Lu.  There are only 3 states in the country that allow parents to be 'Parent CNA's" so we are fortunate to be in one of them!

Tuesday afternoon a hearing test and ENT.  Lucia passed her left ear for the hearing test but the right is still inconclusive-(probably due to wax or fluid in the ear) We'll give her some drops to  (just remembering to do that now-whoops) to help loosen up her wax in her wee ear and then we'll retest in a few weeks.

Wednesday we met with both of Lucia's therapists- Physical, Occupational and the case manager to do a 6 month assessment and to set up a new care plan.  We hope to add a Speech Therapist to her care to assist with oral skills and also feeding.  Lots of questions were asked- what is Lucia doing now, what does she like to do, what are your goals for Lu for the next 6 months...   She is sometimes tracking, rolling a bit from back to side, holding up her head pretty well, loves to bathe, loves her mommy!  She does!  She loves me and I'll position myself close in front of her and she will giggle and smile at me at least 1 time a day!  LOVE!  Some of our goals- sit unassisted for 1 minute, eat or learn how to swallow,  reach for objects in front of her, and teach the dogs to stop barking at all her therapists/visitors when they come over :)

We reviewed her last goals, from 3 months ago,  and she is doing pretty darn good.  Every bit of progress is a celebration in our house and anticipating many reasons to celebrate I just signed up for an automatic weekly delivery of champagne (not really but sounds like a great idea) :)

Tomorrow we have Cardio and GI, then Friday Neurology.  We have seen some episodes of interest that we need to talk to her neurologist about...hoping they are not serious..  Next week we are doing another Swallow Study and upper GI xray to see what is going on with her swallow situation.  We also go see her ortho, Dr. Benson-YAY- we love her!  and then some later...

So,  so far...pretty good.  I heard one of the most beautiful things I have ever heard this week from Lizzie Golds mom (Lizzie is Lucia's PKS friend-same age as Lu- born in MN)

Her mom said:
 "Lizzie visited me during my yoga mediation (she was on a retreat) and in my meditation/dreamlike phase Lizzie was dancing and holding my hand.  I said, stunned, 'Lizzie You're Dancing!!!!'  Lizzie looked at me and said, "Mommy, you don't have to have legs to dance, or ears to hear or eyes to see." and then she took off flying like a beautiful eagle, and I flew up with her as a hawk.'

Lizzie, you are soooo right and smart and beautiful..dancing, seeing and hearing are different for each and every one of us- and are in the eye of the beholder.  We will hold you girls forever and ever and help you dance your life through happiness and love.  Let's dance Lu, Lizzie, Giacomo, Simon, Shaw, Kingsley, Stuart, Spencer, and Reese, and EVERYONE!

Let's dance and love and dance some more!

Thank you Linda for going to our appointment yesterday- was great having you there.  Thank you Aimee for your nice card, and Taryn and Monica for your messages.  Anna- BIG hug goes out to you and some delicious pastries too. xo :).  We send hugs and kisses to my mom on her getaway-Pura Vida.  We also send sweet Davey, AKA the beast, or the rabbit, kisses in doggie heaven.  We miss you so.  And And God Bless or God Blessed You Lizzie for sharing such a beautiful, beautiful FACT!  XO

on table at pulminologists-

Let's get this party started!

new outfit and hoodie from aunt courtney and uncle jonney, boots knit by Monica

Happy New Year!  An end of beautiful holidays and a beginning of a new year and with that many possibilities including new resolutions, new beginnings, a clean slate and new goals!  The month of January marks about a 'six month follow-up' month for many of Lucia's doctors, therapists and more.  We have about 2-3 appointments every day this week, starting Monday ending on Friday (I may have gotten a bit overzealous) and I am looking forward to every single one of them.  Lucia seems to have good health for the most part.  She is doing well on her oxygen, hasn't caught a bad cold, and her pulse-ox shows that her oxygen and heart seem to be going strong.   I'm excited to see and hear what the doctors have to say (hoping good things) and to just get a fresh report on our little bird.
Lungs, Heart, Gastrointestinal, Hearing, Neurology, some Therapies and a few more this week will give us some of our baseline for 2012.
We hope and pray for the BEST!

Most of the doctors that we'll see this week will tell us what they see physically/structurally..  We know that as Lucia gets older her development and milestones will start to grow further apart from her peers and therapy helps but we like to have some control over her internal organs, hence all the doctor visits above.  There may be 'fixes' for those- hearing aides, medicine, oxygen, maybe even some surgeries..but her hypotonia (low muscle tone due to brain not communicating what to do to the muscle) is pretty incurable.  There is no 'Tone Doctor' unfortunately...someday I pray and so many pray that there will be..  Her brain function is not in our control.   Imagine not knowing how or why to 'reach' for things like toys, or how to swallow properly, or how to focus your eyes to work together (even eyes have low tone!!!), or your brain not telling you what you see,  how to bear weight/ push up on our arms or legs, even how to cough properly!  It really stinks to have low muscle tone, completely blows, it's just not fair...BUT that is what we have to work on too, and work on that we WILL Little Lu!

SO... Let's get this New Year 2012 Party Started!  Let's go visit our docs, and talk about therapies and let's start with helping this girl learn how to eat!  I am determined to teach my little Lubird how to take little bites of food from the front of her little lips over her sweet little tongue, carefully down her throat and down into into her TUMMY.  She gets excited and starts to take food or even her pacifier and she ends up not swallowing fully.  She takes it in, maybe swallows but then keeps looking for more food with an open mouth and ends up almost in a choking like pattern/or that is how is appears.  She is not truly choking but her heart rate skyrockets and she is not in an enjoyable state... Not swallowing properly can result in food or liquid going into her lungs/aspirating.  Aspirating (caused by low tone) can be so dangerous and the swallow process is scary for Lu and that is the LAST thing we want to happen.  We don't want her to have ANY aversions to oral eating..because then she won't try.  So our New Years Resolutions/Goals are to teach Lucia how to eat and maybe even drink.  Thinner liquids are more difficult to swallow than thicker so eating pudding type foods first and then hopefully move on.  We don't mind the g-tube/button but we want her to enjoy food by mouth and eventually she can eat foods in her cute orange high chair from her auntie lala and kimmy!!!
We love this girl more and more and I swear she is prettier today more than she's ever been.  We love our girl- let's say it again-We LOVE this girl named Lu and we are excited to kick off the New Year of 2012 with goals, good doctors, good family and friends.  So...let's get this party started in 2012 and get our little girl off on the right cute, chubby and soft, so soft foot!  We can do this Lu!
Let's swallow and have fun eating together- God knows we LOVE to eat...too much of course..but we want to share this experience with our child!  Slowly and surely we hope to get her there!  Little bird bites for our little Lubird.

If someone can pass Lucia's swallowing resolution on to Tebow that would be appreciated too :)  Thank you Parsley family for a great dinner on Friday night at your home with your special family.  Ela,  Giacomo, and families we are so excited to hear about your visit and can't wait to be a part of that too.  Thank you Lucia for giving us more smiles and giggles this week than EVER before!

Love and light and good luck with all New Years Resolutions!  2012 here we come!

lu with her new favorite play station from grandma Noni! Pretty outfit from my cousin Kim and her daughter Tigi

little lu!

Happy Special New Year!

Little Lady Lucia- Happy New Year!  Little Lu had a fabulous Christmas and New Years Holiday with a grand finale of a one night getaway in downtown Denver with her parents.  Little Lu in a big bed-what a gal, she sure is something special!

Queen Lu at the Hotel Monaco

It's been a special year to remember like no other.  A baby, a special baby, a girl, a special girl, an operation to fix some special parts, oxygen, doctors, special doctors, smiles, big blue eyes, pink dresses, pink shoes, pink cheeks, presents, special presents, pictures, special therapists, her own special party, a roll or two, giggles, kicking, swimming, a special swimming device, a special hand, special toes, special from head to toe, a special club called PKS Kids, peas, a little engine that could, a special letter L, special little friends, prayers, machines, pillows, special pillows, toys, special toys, and people, many special special special people!  We love special, who doesn't? But we never really knew how much special we would be surrounded by...especially a special child.

the Lu hold

Our Lu was on her own special path from day one and she will continue to be on her own special path next year and her whole special life!  We are thankful for her strength to bring her hands together and hold them together- the Lu hold- she loves to hold those hands together real tight and it's the cutest thing.  We are thankful for her ability to hold up her pretty head, her neck has gotten so strong.  We are thankful that she can sit up (with a little special assistance :) ) roll from back to side, and from belly to back, bring her knees/legs up to her strong abs, and that she suck her paci.  We are thankful for her little songs that she sings, including her feisty grunts and sweet cries!  We are thankful for her eye contact and interactions with the world.  We are thankful that she can breath well without oxygen all the time.  We are thankful to be in Colorado with friends and family around us to watch her do her special thing.  We are thankful for our doggies that give her kisses and cuddle up close to her.  Most importantly, we are thankful that we have so much to be thankful for in 2011- THANK YOU LITTLE LADY LUCIA, Little Lu, Lubird, Louie, Lulu, our special Light.

May 2012 bring us more to be thankful for and may it bring good things for all living things, and all special things because after all who does not love special?!

Maria visiting Lucia this week! Love you Maria

New Years Eve Dinner

New Years Eve with my parents and Henry

Lil Lu w a lil candle and big bottle o bubbly

NYE day outfit
this hat may look pretty but its making me MAD 

Ok this hat isn't so bad, I bet I look pretty special!

Thank you Maria and Zekers for coming to visit, so great to see you!  Thank you Tate for organizing a FUN Friday night NYE celebration! Thank you mom and dad for a FUN NYE Celebration, Thank you husband and Lu for a FUN NYE Weekend! It was ALL Very, Very Special.