What are they doing to Kymee?

This doll has a cleft lip and No-Nos -how cute is that!

At our Pre-op with Dr. Obaid, he clearly explained what he would be doing to repair Kymee's cleft palate. I am still wondering whether I wanted, or want to know the information. Dr. Obaid was professional and matter of fact - and I smiled as I listened - then walked to the car and shock set in.

"Did he just say what I thought he said?" I asked Emylee.

We sat in the car, laughing and making jokes at what is not funny at all. Our warped way of dealing with the stress.

So what is Dr. Obaid going to do to "fix" Kymee's cleft?

He will cut around the gums, by the bone,

and pull the palate together to meet in the middle

He will then stitch the two sides together to create a palate. The sides will be left open. Skin will grow where there is a bone, so the sides will eventually close up where the middle will not naturally close. The surgery itself with take approximately 2 1/2 hours.

He said he would be putting a suture in Kymee's tongue and then taping the string to her cheek for a day or two. It would look like "he had not quite finished surgery." Then in his words, "We could pull the string if Kymee stops breathing."

Emylee suggested making a shirt for Kymee which reads, "In case of emergency, pull string."

(This picture is the least horrifying one I could find on line)

I'm not sure which scares me the most - the fact that she might stop breathing - and I would have to DO something, or the fact that her tongue will be tied down.

So, being the people that we are, Emylee and I both went home and researched this "tongue thing." What we found is that is is preventative treatment. One of the challenges of Cleft Palate Repair Surgery is that the tongue will snag on the sutures, hurt it, and the baby can swallow her tongue and choke. Stitching the tongue down prevents this.

Kymee will get her tongue pierced before Mandy - image that!

Then Dr. Obaid said we may be able to take her home in 24 hour! SERIOUSLY??? I don't want to take her home if there is any chance that I have to "pull the string!" We can take her home as soon as she is eating on her own. Let's keep the food and pain meds coming through an IV - for Kymee and me!

After surgery, Kymee will eat from a 1/2 oz syringe for 3 weeks. Then she can go to her cup but no bottle.

She will wear "No-Nos" for around 6 weeks so that she can't touch her mouth or put anything in it.

(Here is a picture of Kymee with No-Nos on from her first surgery. Because she always scratched her face with the No-Nos, Emylee suggested that I put leg warmers over them. I'll do the same this time.)

I know countless children have had this surgery - but they were't my kid. I won't lie - I'm nervous and scared. I'm excited for her to get it done and over with, but it doesn't make me worry any less.

I take comfort in knowing God is in control. He gave Kymee to us, and He will give us courage and wisdom to care for her needs.

Psalms 55: 22 gives me comfort.

The Smile which Blessed our World

This is the Smile which blessed our world

Dr. Obaid is the surgeon

who God chose

to change the smile

which blessed our world

This is the surgery,that Dr Obaid performed,

Which changed the smile,

Which blessed our world

This is God's healing

from the surgery

that Dr Obaid performed

Which changed the smile

Which blessed our world

This is the smile

after the healing

from the surgery

that Dr Obaid performed

Which changed the smile

Which blessed our world

This is the girl

who God will use

to bless not just our world

with her smile;

But the whole world

with her story.

First of Many

Kymee's First Day without the Bottle

Boo. She loves her bottle. It will be sorely missed.

As sad as it is to see it go - it has to be done. 2 1/2 weeks til surgery - she NEEDS to drink from a cup. She is ready. Kymee is growing up so much. She's had so many firsts this last couple of weeks.

First Curls

Yea! Hair.

First time saying "Mama"&

First time giving kisses on demand!

o

First time to sit without support

First Time to pull herself up

First Artichoke

First day completely on the cup

Kymee loves to eat!

She bangs on her highchair when she wants more.

She's a mess! She sneezes avocado all over her face.

So here comes the cup. Boo.

She HATES her pink noseless cup - she screams when she sees it coming. So . . .

I offer her a sippy cup. I have read a blog by a mom with a baby with cleft palate who says her baby learned to drink from a sippy cup in which the flow stopper has been removed. So I figure I'll try the same. No luck. Kymee pushes the cup away, and purses her lips together.

I take the lid off the sippy cup and try to get her to drink from it. Boo. She screams, as if I have offered her pickle juice.

She sees that I am drinking from a real life water glass, and reaches for it. "Good idea," I think. "She can drink like Mommy." I put water in mine, and formula in hers. She drinks. No screams. Yea.

Boo. The formula squirts out of her nose as fast as she drinks.

Thankfully, Laurie, the ECI worker is coming today. She says we should try a new cup. Unfortunately, after looking in her car, she doesn't have one to give me. She finds a different cup - one she has never used with a client before. But, we can try it. It looks like Kymee's bottle, but she drinks from it like a cup. Here's the cool part . . . You can control the flow of liquid - slow, medium or heavy. I adjust it to slow - we can move up from there.

Kymee takes right to it. she drinks 10 oz. (The cup only holds 4 oz, so I have to keep refilling it) I throw a towel over both of us to catch the drips, spills and nose squirts. But to my pleasant surprise, almost no run off fluid. It actually went down Kymee's throat! She's drinking!

She drank ALL her formula from the cup today - NO BOTTLE! All from a happenstance the therapist had in her car. Praise the Lord - maybe the next two weeks won't be a stressful as I thought they would be.

Yoga with Kymee & Kermit

Kermit Does Yoga

Kymee does Yoga

Plank Poise

Downward facing Dog

Upward Facing Dog

Cow Poise

Modified Reclining Angle Poise

Locust Poise

Happy Baby Poise

Nurture over Nature

"Kymee has the predisposition to be "slow" because of her biological background." the caseworker informed us.

"Then again," she stated, "it may just be environmental, and changing her environme

nt may make the difference."

Nurture over Nature

So our goal is to expose her to "whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anyt

hing is excellent or praiseworthy—think about such things." Phil. 4:8

All things bright and beautiful,

All creatures great and small,

All things wise and wonderful:

The Lord God made them all.

Beautiful Sounds

Kymee attended the Myerson Symphany for the first time at 5 mouths of age.

And at 6 months we went to the Musical Instrument Museum in Phoenix. She loved listening to drum beats from around the world.

After previewing every classical CD on the shelf, Andres bought her this for Christmas.

I read poetry to her every day - I love beautiful words, as I hope someday she will too. My current favorite is William Blake's "Songs of Innocence"

A CRADLE SONG

Sweet dreams, form a shade

O'er my lovely infant's head!

Sweet dreams of pleasant streams

By happy, silent, moony beams!

Sweet Sleep, with soft down

Weave thy brows an infant crown!

Sweet Sleep, an

gel mild,

Hover o'er my happy child!

Sweet smiles, in the night

Hover over my delight!

Sweet smiles, mother's smiles,

All the livelong night beguiles.

Sweet moans, dovelike sighs,

Chase not slumber from t

hy eyes!

Sweet moans, sweeter smiles,

All the dovelike moans beguiles.

Sleep, sleep, happy child!

All creation slept and smiled.

Sleep, sleep, happy sleep,

While o'er thee thy mother weep.

Sweet babe, in thy face

Holy image I can trace;

Sweet babe, once like thee

Thy Maker lay, and wept for me:

Wept for me, for thee, for a

ll,

When He was an infant small.

Thou His image ever see,

Heavenly face that smiles on thee!

Smiles on thee, on me, on all,

Who became an infant small;

Infant smiles are His own smiles;

Heaven and earth to peace beguiles.

Beautiful Art

Kymee has already enjoyed the Dallas Museum of Art

And her favorite book is "Art for Babies" - all black and white pictures done by famous artists.

She'll just stare at the pictures

Beautiful Smells

I love pure essential oils.

Kymee's favorites: Peppermint, Lavender, and Eucalyptus

No Picture Available

SCRATCH
AND
SNIFF

The social worker asked, "So how do you feel about the possiblity of Kymee being slow?"

My response, "God has a very special plan for her, and he has given her every her everything she needs to accomplish that purpose."

My job is to expose her to the best, love and nurture her, and teach her to fulfill her purpose for the glory of God.

He gave us eyes to see them,

And lips that we might tell

How great is God Almighty,

Who has made all things well.

Cecil F. Alexander

Debate Case for Kymee

Resolved: That Kymberlee Rose Piñero will be prepared to drink healthy clear liquid from a cup before surgery in April

Inherency

(For you non-debaters in my world, this means the facts in the status quo, or what's happening now)

1. Kymee was unprepared to drink clear liquid after the first surgery
2. The nurses fed Kymee Gatorade
3. Gatorade is not the healthiest liquid for infants
4. Research proves Coconut water is the best clear liquid

http://hubpages.com/hub/Coconut-Water-A-Natural-Energy-Drink (All my debate friends must forgive my lack of proper sourcing)

• It contains lauric acid which is also present in breast milk and is known to boost metabolism.
• It has the same amount of electrolytes as human blood. In fact it is a universal donor, identical to human plasma.
• It contains more potassium than most energy and sports drinks.
• Coconut water is much more nutritious than fresh milk.
• It is also healthier than orange juice.

5. Kymee Likes Coconut water

A picture is worth a thousand pieces of random evidence

Plan

Mandate 1: Offer Kymee Coconut Water daily - first in a bottle, than the cup

Mandate 2: Train Kymee to use the cup

Notice the tongue. Kymee does not use the roof of her mouth and cheek muscles to suck because of her cleft palate. Instead, she moves her jaw up and down, and uses her tongue to press the bottle to extract liquid. She tries to do the same with her cup - stick her tongue out and push the side of the cup with it - no success.

A. Exercise Cheek Muscles

Not overly lightly, we must squeeze Kymees cheeks in - like an annoying grandma - squeezing the cheeks together and saying, "Who's a pretty baby?"

B. Exercise Tongue

Place finger on tongue - without having Kymee chomp down with her one shark tooth - and press lightly. The edges of the tongue should curl around your finger.

Agency & Enforcement: Mom, Dad, Sibling, Grandparents, and All Prayer Warriors

I as the Affirmative team reserve the right to clarify the affirmative case if any questions should arise.

Solvency

1. Kymee wiggles her bunny toes in anticipation of her coconut water

2. Kymee smiles in contentment when coconut water is "All gone!"

A vote for the Affirmative is a vote for Kymee's health and happiness.

Cry-Baby

Some mornings are good.

Most mornings are good.

Kymee wakes up cheerful and offers huge smiles, warm hugs, and cooing "I love yous" to

Mommy, Daddy, Grandma and Grandpa. (Brother and Sister are still in bed - so always miss these precious moments.)

Some mornings are bad.

Some mornings,

and lets be honest,

some random afternoons, evenings, and nights

are very, very bad.

Thus was this morning.

Kymee woke up screaming - you heard me right - not crying - SCREAMING

She does this randomly. Not quite as often as she used to, but still more often than I'd like. She can be playing, perfectly happy with tummy time - and then be screaming. Or like this morning

she just woke up that way.

Why you may ask?

1) The doctor calls it "Colic" - a label I have learned means nothing except "I have no idea why she cries and doesn't stop - and your insurance doesn't pay me enough to find out."

2) The therapist says, "She hasn't learned self-soothing skills, she must be taught" - but

they have yet to teach me how to teach her how to stop the screaming once it starts.

3) The cardiologist says, "It is most likely still the drugs in her system she had en-vitro" - this one makes the most sense to me

4) Mommy says, "I don't care why - just make it stop"

Forget "Self-soothing" I try "Mommy-soothing"

I sing. I cuddle. I rock. I pace.

She glares at me out of the corner of her eye, as if to say, "You're my Mommy you're supposed to make it better."

I offer her "Wubby"

No Luck.

I offer her "Bunny"

No luck.

Side Note:

I have never believed in inadament attachment objects - I believe babies should be attached to real live people who love them. But all my reading, and talking to other moms with medical need babies - attachment items can help get them through moments when Mommy and Daddy aren't available - like when you are being wheeled into an operating room, or waking from anesthesia in the recovery room. So - we are trying hard to "make" Kymee attached to her "Wubby" or "Bunny" - her seemingly favorite comfort items.

Back to the story: She continues to scream.

Mommy offers a handful of comfort.

I pray for her as she grabs my fingers in desperation. I pray God will heal her and give her peace. I pray for me too, that God will give me wisdom and patience.

She finally wears herself out, falls into a fitful - hicuppy sleep.

Luck.

Or better yet

God's Grace

Peace

And

Answered Prayer

Some episodes are 20 to 30 minutes, some are an hour and a half.

This one:

One Hour

Ten Minutes.

An hour and ten minutes of God teaching me how to love like He does.