Mouthing Off

Kymee’s therapist is working to improve Kymee’s mouth functionality. So what does a baby mouth do? Kiss, Eat, and Speak.
KISSING

Kymee loves to give kisses, which really means she licks all over my face. She also give wonderful Eskimo Kisses. But lately she loves to lean her forehead against my forehead, sometimes head butting me to say, ” I love you, Mommy.” When she sees Spartan, she sticks out her tongue for a doggy kiss.
No therapy needed here (Only napkins to wipe off the extra slobber)
Speaking
Before Kymee had surgery, she said mostly vowels, with a few “mmmmms” thrown in. Nice for me because the only word she could form with her mouth is “Mama.”

She also started making these weird guttural sounds from the back of her throat – like she was growling. This may have practical if she had been learning Arabic, or maybe German. The therapist explained that all babies speak all language sounds. The language of their environment determines which sounds are reinforced and which are ignored or discourages, so eventually dropped. Because the muscles in Kymee’s mouth have not developed properly, we must encourage sounds which are not always “correct” but which have not the closest sound, but the closest mouth formation to the sound we want to achieve.

For example, Kymee began saying “nnnnn” after surgery. This is good because the tongue is in the front of the mouth.Ds are too hard a sound yet to make with her new palate. So, when Kymee says, “Nana” it means “Dada.”And although “Gaga” sounds closer to “Dada” than “Nana,” The n sound is formed in the front of the mouth – like the d, whereas the g sound is formed in the back of the throat. If the g sound is encouraged, Kymee’s speech will be harder to correct in the future.
So, this is Kymee’s “Nana.”

In order to encourage muscle tone and development in the mouth, which will later help her speech, we were given this odd toothbrush.








Along with cleaning her teeth, we can gently massage the gums and palate after it heals fully. Kymee doesn’t like it too much.

EATING
Kymee loves to eat, but there are 4 main problems with her eating.

  1. Food still comes out her nose.
  2. She has become a picky eater.
  3. She does not have a “stop” or even a “pause” button on her appetite.
  4. She is under-weight (which oddly enough doesn’t seem possible with #3 being true as well)
Food & Nose Challenge:
I thought this would end when the surgery repairing her cleft was complete. The therapist explained that when you eat the soft palate moves back and closes the opening to the nose so the food will go down the throat. However, Kymee has not developed the muscles needed to move the soft palate back – so some food goes up into her nose instead of down the throat. This is called “velo-pharyngeal” incompetence. At this point, we are hoping time will develop the muscles needed, and therapy is not being done.
Picky Eater:
After surgery, Kymee decided she would no longer drink formula. She purses her lips together, she screams. She holds it in her mouth and doesn’t swallow. She lets it drip out of her mouth as she lets us know in high pitched squeals that “THIS IS DISGUSTING.” I don’t blame her – in fact, I quite agree. However, formula has high nutritional, and caloric value. The therapist, suggested yogurt, and or soy milk. We are having success with both – but Kymee is still not getting all the nutrition she needs.
Can’t Stop Eating:
Kymee never gets full. She can eat half of a honeydew melon, and scream when I stop feeding her. She will eat until she throws up. I try to measure everything out to give her the exact ounces she needs, than I let her scream for 15 minutes at the end of feedings. Very frustrating.
The therapist put a few things together I would never have thought of. 1) Kymee’s inability to stop eating; 2) Kymee’s inability to stop crying once she starts; 3) Kymee’s unusually long attention span – she can play with a deck of cards for 45 min to and hour!
All three traits are obsessive, and she seems to have no self-control (self-regulation). Even a good thing (like the attention span) is bad when it is not age appropriate. Self regulation is a brain-stem function (like breathing) and most of the time it happens without being taught. It is not a learned behavior. However, if there is a problem in this area, it can be taught and practiced using other parts of the brain. Right now, we are going to keep an eye on Kymee and see how these skills progress naturally.
The therapist also suggested that Kymee is not getting enough oral stimulation because she has not been sucking sense birth. So we have a new “toy” to help work out the mouth muscles. Meet “Gator” Kymee’s friendly juggle.
Jiggler Gator facial massager
We hold “Gator” against Kymee’s cheeks, and she chews on him. It provides sensory imput to the lips, gums, tongue, palate, and jaw.
Under Weight:
Although she loves to eat, she is small for her age. When she came to live with us, she was 90% in height and 50% in weight. Before surgery, she was 50% in height and 25% in weight. Now, she lost weight during surgery and recovery so now she is 50% height and 15% weight. She is 27 in, and 17 lbs 12 oz.
Because of these challenges, a nutritionist was called in.
Kymee is on a new diet. Emylee is jealous. So am I. It is a high-fat diet. We are to add real cream to her fruit, butter and olive oil to all her meats and veggies, and she is to eat high fat cheese, yogurt, and dairy products. Add more meat and egg yokes to her diet. I don’t think she’s going to want to go back to watered down flavorless baby food from jars.
What we are hoping is that she can eat the same ounces of food, but feel fuller, be happier, and gain some needed weight before she slips into the “dangerous zone” (which is under 10% weight).
I have no doubt Kymee will use her mouth for more than just slobbery kisses very soon!

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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.
Infa Trainer Cup
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.

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.
Classic Baby: Beethoven

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.

Art for Baby
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.