Tortoise Brain or Hare Brain?

brain running

Doctor’s Illustration of Rose’s Brain

Explaining to a five year old why their brain doesn’t work quit right is a challenge. The psychiatrist gave it his best shot, “There is this little man in this part of your brain (He points to a picture of the brain and the part that controls impulses and self-regulation). He runs really, really fast. Then there is this guy (he points to the picture of the stick figure standing in the thinking part of the brain). He doesn’t move as fast. We want to play a game to stop this guy (the impulsive one) and speed up this guy (the thinking one) so that he (the thinking one) wins the race.”

hare 1

My first thought – Rose’s brain is The Tortoise and the Hare. How can I use the story to help her in her therapy?

I love, love, love the book “Healing Stories for Challenging Behaviors.” (Did I mention I love this book?) The book asks the question, “Could truths contained in the rich realm of story reach children more directly, and in a way more in tune with their innate imaginative capacities?”  Later in the book, Susan Perrow answers this question by writing, “All stories have therapeutic or healing potential. If a story makes people laugh, the laughter can be healing. If a story makes them cry, this can be healing too. Folk and fairy tales, through their universal themes and resolutions, have healing possibilities. They can offer hope and courage to face the trial of life and help the listener find ways to move forward…But over and above the healing potential of all stories, specific stories can help or heal specific situations…When (we) use a healing story with children, the story has the potential to bring the behavior or situation back into balance.”

Perrow’s advice for writing or rewriting classic stories for a specific child’s needs:

  1. Focus on specific behavior (“throws a toy” not “acts out violently”)
  2. Use Repetition, rhythm and rhyme (these stick in the mind)
  3. Have a happy and hope-filled ending

I decided to write a “healing” story to help with the process. Here is my humble attempt:

hare 3

Once upon a time there was a hare. He was very bouncy, and jumped around aimlessly. He moved so fast, he never stopped to think about where he was going or what he was doing.

In the same meadow, lived a tortoise. As everyone knows, tortoises are very slow. What they may not know is that tortoises are also very wise. The reason they are slow is because they think about every step they take.

One day the tortoise said to the hare,

“Run a race – if you dare.

The race is won by the one with care.”

“I am so much faster than the tortoise and I so like to win.” thought the Hare.

The tortoise repeated,

“Run a race – if you dare.

The race is won by the one with care.”

So the race began. The tortoise thought about where he was going and began moving. He did not move fast, but he kept his eye on the finish line and kept moving forward – thinking about each step as he went. As he strode along, the tortoise kept repeating,

 “Run a race – if you dare.

The race is won by the one with care.”

The hare knew he would win – and he had a little time to spare – so he jumped and hopped and spun around in circles. The hare accidentally kicked a rock and stubbed his toe. It hurt, but he could still hop on one foot faster than the tortoise could walk.

All of the sudden the tortoise passed the hare – still saying,

 “Run a race – if you dare.

The race is won by the one with care.”

The hare became really angry when he saw the tortoise passing and instead of hopping faster towards the finish line, he kicked a tree with his good foot. “OWWW” yelled the hare.

Just then the tortoise crossed the finish line and said,

 “Run a race – if you dare.

The race is won by the one with care.”

The hare was sad that he had not stopped and thought about how to win the race like the tortoise did – but the wise tortoise promised to help him STOP, THINK, and 

 “Run a race – if you dare.

The race is won by the one with care.”


My Illustration of Rose’s Brain

Mouthing Off

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

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)
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.

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!

Debate Case for Kymee

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


(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 (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


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.

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.

Happy Hearts Don’t Float!

Birth: heart murmur.
2 Months: EKG ~ small hole in heart
5 Months: EKG & Echo-cardiogram ~ hole smaller, heart surrounded by liquid.
Floating Heart = Very Scared Mama
1/11/11 – Cardiologist Appointment
Tracts heartbeat

Not bad – until the tape was ripped off
Takes pictures of heart

You try keeping a 6 month old perfectly still.
Murmur remains. Small hole remains.
Doctor’s explanation: It was probably from her operations, and it went away on it’s own.
Mom’s explanation: GOD ~ PRAYER OF SAINTS
Kymee has a happy heart!

Kymee’s Cup

First day of in-home therapy
“Drinking from a cup.”
A funny looking cup – A nose-less cup
(The little pink one looks like Kymee’s)
The purpose of the cup is to allow a child to sit completely upright and not tilt their head when they drink. This way gravity works and the liquid drips down the throat. If Kymee tilts her head back to drink, as we do without thought, whatever she is drinking will creep into her roof cavity and come out her nose. Goal – down the throat, not out the nose.
First Try
Pictures Speak loader than words!

(Tip:Rubbing a baby’s throat lightly encourages her to swallow)
Second Attempt
“I want my Mommy!”

“I did it – now give me my bottle.”
Moral of the Story: Never send a therapist to do a Mommy’s job


Learning to Eat

I didn’t realize how many things go into eating. I learned today that one must suck, use muscles in the tongue and soft palate and throat, and one must coordinate all of these muscles while continuing to breath. I do these things naturally, Kymee does not.

With her cleft palate, she has not learned to
suck properly, she has a special bottle – the Haberman Feeder – which she moves her jaw and gums the nibble to express the formula. She chokes easily and often looses her breath while eating – which sends her into a screaming fit, making it impossible for her to continue eating. Sometimes, she acts like she wants the bottle, but then simply holds the liquid in her mouth and doesn’t swallow. Eventually, the nasty smelling formula drizzles out her mouth and onto her chin and me – or it drips out her nose. Even when everything is going well, and she is gumming and swallowing, the formula often squirts out her nose (to her big brother’s horror). But that’s life when there is nothing but a hole between your mouth and your nostrils.
Cleft Palate Repa
ir surgery is set for April 13. The surgeon wants Kymee to be fat and healthy, and drinking solely from a cup – and not a sippy cup. So after Christmas we are to start solid foods – can’t wait to see those peas coming out her nose. And we are to start her drinking clear liquids.
Some interesting things I learned:
1) Teaching a baby to eat is about texture, taste, and muscle control
2) I always thought cereal was just filler – with very limited nutritional value – it is – but it has a purpose. It is tasteless, so when mixed with formula or breast-milk, it takes on that flavor. So, a baby only has to get used to a new texture and not texture and taste at the same time.
Steps to achieving Goal:
1) We are to encourage Kymee to play with her food. Put her fingers in the food she’ll eat & encourage her to lick and suck them. If a baby acquires the texture of food on her hands, she is more likely to accept it in her mouth. – How cool is that!
2) We should use various methods of getting food into Kymee’s mouth. Her fingers, our fingers, different sizes and materials of spoons, spoon the food into the mouth not just in the middle – but from different angles, and dip a favorite

toy in the food and let her lick it off. ~ No need to worry about manners!

3) Kymee must sit upright, and not recline – so gravity can help with the work.
4) As far as cup training, we’ll start with a straw. She won’t suck it, but rather we are to gather the liquid into the straw, holding our finger over the end (just like I used to do when I was little – and get in trouble for) then drop it into the back of her mouth so she is forced to swallow.
Can’t wait for the fun to begin – Who wants to come over for lunch?

ECI Evaluation

ECI, Early Childhood Intervention, came to the house and evaluated Kymee today. There were two evaluators – a supervisor and a speech therapist. The initial evaluation was made by studying medical records, diagnostic testing, and asking my husband and I questions.
(As a point of reference – Kymee will be 6 month old next week on Christmas)
Developmental Assessment Results:
Areas Assessed, Developmental Score & Months Delayed
Cognitive ~ 7 mo ~ ahead : )
Self Help/Adaptive ~ 1 mo ~ 4 mo delayed
Communication ~ 4 mo ~ 1 mo, at risk
Gross/Fine Motor ~ 5 mo ~ on target
Social/Emotional ~ 5 mo ~ on target
Goals for next 6 months
1) Drink from cup (not sippy) by April
2) Learn to eat solids
3) Learn to self sooth
4) Say “mmmm” and “nnnn”
5) Begin mimicking
The speech therapist will begin working with our family twice a month. We will begin by teaching Kymee how to eat and drink. And they will give me tips to work at home on the other issues.