Progress Report

Kymee has made so much progress in her speech this last semester. A week before she began speech she had her ear tubes replaced. I believe that the combination of hearing clearly, speech therapy, and age appropriate behavior has made all the difference. For those of you who are fascinated by technicalities of evaluations and therapy, like I am, this post is for you. This is a summery of Kymee’s latest evaluation.

1. Lack of verbal reasoning
2. Little to no knowledge of animals or household objects
3. Little use of social behaviors such as greetings or sharing
4. Identifies colors but unable to verbalize names
5. Unable to produce names of immediate family
6. Struggles with bilabial sounds, fricatives and glottal stops
(Googling this helped me understand Kymee could not make sounds which used both lips, or make sounds in which the airflow must be stopped to produce the sound)

1. Adapted to being with therapist away from Mom
2. 3 minute attention span
3. If more than one toy available for play – she struggles to choose and becomes upset
4. Is upset when asked to share (isn’t this normal for a 2 1/2 year old?)
5. Throws toys when finished
6. Throws things at therapist instead of verbalizing her needs
7. Noises outside room distract her
8. Strikes the therapist wen doesn’t want to participate in planned activity (I can vouch for this one personally)

Therapy Goals 
1. Repeat verbal commands 80% of time
Initial: 20%
Final: 100%
2. Verbally request items to play when prompted 80% of time
Initial: 40%
3. Verbally request items to play without prompting 80% of time in 2 sessions
4. Repeat animal names 80% of time
Initial: 20%
5. Use 2 word phrases in structured play by modeling
6. Repeat family names
Initial: 25%
Final: 85%
7. Repeat common household item names
Initial: 20%
8. verbally identify household objects
Final: 75%

1. Says “all done” when finished with toys instead of throwing them
2. Verbalizes names of colors, animals and family member most of the time without prompting
3. Could play for 10 minutes without frustration
4. Could greet and share more age appropriately
5. Kymee no longer hits her therapist (now if we could figure out how to make her stop hitting Elijah)

1. Increse 2 word phrases
2. Increase age-appropriate vocabulary
3. Improve verbal identification of family members
4. Monitor Kymee’s articulation production for further assessment and remediation 
(I’m ready to move on to this part – but it may be a while)

Flower Fairy Kymee and the Evil Speech Stealing Monster

Once upon a time there was a Flower Fairy named Kymee.

An evil speech monster stole all Kymee’s words. Kymee couldn’t use her words to name all the beautiful flowers around her. 
Then all of a sudden, a Fairy Speech-mother appeared. She played and sang to Fairy Kymee and tried to help her find the words which the monster had stolen. But she couldn’t do it alone. 

So the Fairy Speech-mother placed a spell on each of those Kymee loved. She shrunk the Fairy Family down and turned them into a village of beautiful popcycle people. The Fairy Speech-mother hoped that if the Flower Fairy could hold them then the power of their love could overcome the monster’s spell. 

Each pop-cycle person, agreed to give Kymee one word or two. 
Kymee dressed Grandma popcycle person on her magnetic puzzle, and Grandma gave  her the words “shirt” and “skirt” and “shoes”

As the popcylcle people rested on lily pads, magical frogs transported Kymee from pad to pad.  And each gave her a new word.
She hopped from Grandpa and Grandma, Abuelo and Abuela to Daddy, Mommy and Yaya. She rode on the frogs back as she visited the lily pad of Baba, Mimi and Eli. She leaped to Carlos, Lydia, and J then to Kenny, Sissy and Trent, and finally she came to land on the pad of Uncle Mark and Auntie Kim.
With each new hop, the magic of the monster began to wear out and the Flower Fairy began to find her words.

 The Fairy Speech-mother put Kymee into a deep sleep, and returned the popcycle people to their rightful place among the flowers. The monster was overcome for another day.

When Flower Fairy Kymee awoke, she had new words to use and was happier then ever before.

The end, until the Speech Monster roars again.

Kymee the Guinea Pig: A Play

The Cast
The Child: Cute as a Button. Runs around the office pulling all the duckies off the shelves, opening every drawer to find what’s in it, and screaming when she doesn’t get her way 
The Doctor: An eccentric geneticist. A self-defined “quake” who has decorated her entire office in duckies to accentuate the point. She arrives to see the patient with a basket-full of goodies, which rival Mary Poppins bag.  Writes every detail of question and answer session with mom, as well as medical information obtained, and observation of the child.
The Mom: Presents a calm astute persona while stress and turmoil are boiling up under the skin. Sings, “Put on a Happy Face” under her breath. 
The Book: Thicker than the Bible, with descriptions and characteristics of every genetically diagnosis, except Fetal Valproate Syndrome
Doctor’s Goodie Bag
Stethoscope – First time it hasn’t taken 2 nurses to hold the child down when listening to her heart
Reflex Hammer – the child laughed when the doctor told her the giraffe wanted to “kiss her knees” 

 Flashlight – for counting nasty, crooked, out of place and backwards teeth – The child showed the doctor her amazing talent of roaring like a tiger

Stickers- to make child very,very happy

Dr (to Child): Lets see your fingers. Can I tickle your toes? (to Mom) Yep – Fetal Valproate Syndrome, see how long they are and how they overlap?
Dr: Is she always this active?
Mom: Mostly
Dr: She will most likely be labeled ADHD, but I’m not ready to make that diagnosis yet. There’s nothing you can do about it at this stage of life anyway.
Mom thinking: She’s two – that’s normal – she is NOT HYPER.
Mom (to child): Let’s put your shoes on.
Child: Nooooooooooooooooo! (throws huge fit)
Dr: She most likely has sensory integration issues.
Mom: What can we do about it?
Dr: Nothing. Next year at your appointment I can recommend her to a behavioral specialist. But we can’t do that until she is 3.
Dr: What’s this under her chin?
Mom: A birthmark. It has changed some since she was born. It now has texture as well as color.
Dr: I believe it’s nevus sebaceous. It’s nothing to worry about, but it should be removed. I’ll give you the name of a pediatric dermatologist.
Mom thinks: just what she needs another specialist, and another surgery.
Dr: Lets look it up in the Big Black Book. Fetal Valproate Syndrome. See here are pictures of kids who look just like her: eyes too wide apart, forehead too large, upper lip too thin.
Mom thinks: A syndrome which creates beautiful children
Dr: Just what I thought. Nothing in here. Nothing about possible behavior effects. Nothing about related medical effects. Nothing about learning challenges. The syndrome is too new. That’s why I write everything down. Someday the information I compile about this child will be compared with the information other geneticists write down about other children, and they will be added to this here book.
Mom thinks: Good thing future children will benefit from my child’s behavior problems.
Dr: With my recommendation, she should qualify to go to preschool next year.
Mom: I’ve homeschooled my other kids. I plan to homeschool her as well, unless there are resources available that she needs and I can’t provide for her.
Dr (contemplates for a minute before responding): I think the best thing for this child would be to be homeschooled while receiving private therapy. Most teachers are trained and able to handle academic challenges in children, but not as well trained in dealing with behavioral problem. This child will benefit most from having one on one attention and using behavior modification Technics. You are doing the right thing.
Mom thinks: Wow – this is the first time I’ve heard a doctor say this. This makes me feel good. I like this doctor.
Dr: She looks good and healthy, and we’ll deal with the behavioral problems in the future. See you next year.
Mom thinks: I hate the term “behavioral problems.” When referring to “unreasonable phobias” “night terrors” “sensory issues” and “overly-active” (notice I didn’t say “hyperactive”) -shouldn’t there be a term other then “behavioral problems?” Something, kinder, gentler – something that doesn’t make my child sound like “Chucky” and me sound like I have the parenting skills of Casey Anthony. 

Say "Moooo"

Amanda, “What does the cow say?”

 “The cow says moooo”
“Say ‘moooo'”

 “What does the lion say”
Kymee, “Grrrrrrrr”
Amanda, “Grr, good”


I watched on a TV monitor from a cubby-hole in the video observation room as Kymee and her new speech therapist played alone in a therapy room. I realized I was paying $25/hr for a graduate student to sit on the floor and name objects, a task I perform daily for free.

I have no idea why, but watching Kymee interact with the therapist, was spell-binding. Best TV I’ve seen for a while. Don’t ask me why it was entertaining to watch when she shook her head and said “no” when asked to exchange her plastic lion for a red fire truck, but it was. Even Andres couldn’t keep his eyes off the monitor and read his book, and laughed out loud as Kymee loaded her baskets with the four-legged creatures instead of willingly being redirected by Amanda. She enjoyed loading and unloading these small critters into the baskets, and when forced to play with the “red fire truck” and “yellow school bus” (as Amanda labeled them) she insisted on lining the vehicles up perfectly on the table. Slightly OCD, or maybe just a melancholy.

I prided myself on the fact that she never once threw a fit, or screamed in frustration, and only hit Amanda twice. I almost feel sorry for Amanda, after one hour of Kymee time, she believes her to be a “quiet” little girl whose one true love in life is manufactured barnyard animals. But, as far as first impressions go, Kymee made a good one. Hope the graduate student isn’t too disillusioned when the real Kymee shows up.

Scream and Point

Kymee was evaluated by ECI (a state funded program run by the school district for kids too young to go to school) to see if she qualified for Speech Therapy.

This is what 19 month-olds are supposed to be saying:
“The vocabulary of a typical 19-month-old toddler may consist of as few as ten words or as many as 50. Yours may be able to link two or more words together, and is starting to use more “action” words. Verbs like “go” and “jump” are common, and so is linking a verb with her name (or pronoun), as in “Come me,” meaning “Come with me.” (It will be some months before she inserts the preposition.) Many 19-month-olds are also well-versed in direction words such as “up,” “down,” “under,” “out,” and “in.”

This is what Kymee is doing at 19 months: 
“Kymberlee is waving bye-bye and uses signs and gestures to request what she wants. She is imitating several sounds: h,m,n and vowels. She can vary her voice to use inflections, and uses 5 verbal words and 4 signs consistently. Her sound repertoire is still limited related to her cleft palate. She is not eligible for therapy.” 

This is what they really mean:
Kymberlee uses signs and gestures to request what she wants = She smacks you to get your attention
She is imitating several sounds = she growls like a lion, and barks like a dog
She can vary her voice = she screams loudly
She uses 5 verbal words = that are only understood by over-compensation, over-zealous loved ones
Her sound repertoire is still limited = she can’t speak
She is not eligible for therapy = Because she can point and scream, we don’t have to spend money on her therapy, you do! 

Birthday – Eve Meltdown

Don’t let the sweet face and twinkle in the beautiful blue eyes fool you – this little girl can be a stinker!

Tonight she had, what I am going to refer to as, a “melt-down.”
Over stimulation?! Too much previewing of birthday sweets?! Super short nap?! Not enough time with Mommy?!
Whatever the cause, or “trigger,” it was bad. Two hours of screaming, crying, kicking legs, head bagging, pulling her hair, hitting her head with her hands, pulling her ears, rolling around on the bed, thrashing her body. Two hours!
I rocker her – I cradled her – I held her close- She would cry and toss and turn, and push me away. As soon as she pushed away, she’s scream and snuggle into me with her head at my breast. Then the cycle would start again.
She seemed to like being held, but being held seemed to overstimulate her and wind her up again.
Finally, I tried something different – I don’t know how I thought of it – it just came to me as a answer to my silent prayer for God to help me help her. I laid her down on the bed and laid pillows all around her – two on each side – her right and left, her head and feet. The pillows were touching her – creating a soft cocoon. I then wrapped a light blanket around her and placed a pillow on top of her for pressure. Just one little head with wispy blond curls could be seen among the stack of pillows. Her crying stopped almost immediately, and her whimper turned into deep breathing. Within 3 minutes she was sound asleep.
I don’t know whether it was the security of being enveloped in fluff, or that she simply wore herself out and anything I tried would have worked in that moment, but there is peace on the other side of turmoil. God is good. All the time.

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!

4 Days/3 Nights at Cooks

Scheduled Surgery
Dr Obaid office called and said Doc would be out of town on 13th so rescheduled for April 27th, 9:00 am

April 26th

Cook Children’s called and said surgery rescheduled for 2:00 pm
Kymee could eat baby food or have formula until 6:40 am on the 4/26
She could drink clear liquid until 10:40 am
We needed to be at the hospital at 12:40 pm for check-in and pre-op

April 27th
Woke Kymee and made her eat – oatmeal mixed with formula & applesauce

Kymee refused to drink the clear liquid – we tried both coconut water & apple juice, she had about ½ oz

Arrive at hospital (really it was closer to 12:50 – which I needlessly worried about)
With Mom, Dad, Emylee, and Grandma

Checked into hospital

Reported to Pre-op for vital signs & countless questions asked over and over again by every person who saw Kymee (don’t you think maybe the nursing staff should talk to the anesthesiologist and the surgery staff so they don’t have to keep repeating the same questions?)
Were told by the nursing staff that Dr Obaid had arrived at the hospital an hour and a half late so our new scheduled time of surgery was 3:30 pm.

We were informed on the procedure of surgery:
1) I would hold Kymee as the sprayed “kiddy valium” up her nose – this would prevent “Mommy separation anxiety” – and she would not remember anything. I ask if I could get some too.
2) They would wheel Kymee back to surgery, she could bring comfort items with her. We chose her wubby, a silky blanket which she loves the texture, and her stuffed bunny.
3) The anesthesiologist would place a face mask on her which would knock her out. I got to choose the flavor: cotton candy. Emylee said this was cruel, because she would grow up with a subconscious aversion to cotton candy – a cruel fate to live with.
3) They would administer an IV after she was already out – so she would not feel a thing.
4) The surgery would take around 2 ½ hours
5) After surgery, she’d be in recovery room than moved to a private room where we could be with her, and if all went well, we’d be going home in 24 hours.

I asked if Kymee could have a vanilla flavored pacifier since she hadn’t eaten since 6 am. The answer, “No, it’s just unfair to the child to give them a pacifier when they won’t be able to suck after the surgery.” My reponse, “And it is somehow fair that my child hasn’t eaten for 8 hours, and we have nothing to keep her happy?” “Sorry.” the nurse replied, “That’s the rules.”

Aunt Kim arrived. We were sent to the ‘play room” to await surgery. We waited. And waited. And waited. 2:00 the original time came and went, so did 3:30. We continued to wait.

The nurses informed us Dr. Obaid was stuck in surgery and it would be a couple more hours. Poor Kymee and her tummy. Surprisingly enough, she was happy and played – and showed very few signs of being hungry, which is very rare for her. We chalked it up to answered prayer. I knew one friend was fasting and praying for her all day, many posted prayers on Nelson and my facebook, our church was lifting her up to God, and our whole speech and debate team was praying for her as they prepared and competed in the Regional Tournament.

Nelson, Emylee and I hadn’t eaten, so we left Aunt Kim and Grandma to watch Kymee and we headed to the cafeteria. When we returned Kymee was asleep in Aunt Kim’s arms.

The anesthesiologist consulted with us and told us he would talk to Dr. Obaid and see if we could give Kymee clear liquid while we waited. He returned to give us a choice. “We can give her clear liquid, but she have anesthesia until 2 hours after consumption. Dr. Obaid believes that the surgery he is in is not going to last the full 2 hours, so if he gets done and Kymee is not ready to go under anesthesia he will bump the patient after her into her spot and she will have to wait til he is done with another surgery. So, we can give it to her and take the chance, or you can hope she gets into surgery before the 2 hours. What would you like to do?” Kymee was surprisingly happy. We said no liquid, we want the next surgery spot. WRONG CHOICE – Kymee was not wheeled into surgery for another 2 hours and 30 minutes.

When they said they were ready to take Kymee, we circled around her, laid hands on her and prayed. I couldn’t pray out load – because the tears were choking me. The nurse gave Kymee the “baby Valium” arranged her on the surgery bed along with her wubby, bunny and blanket; I kissed her; and at 5:10 they wheeled her away.

The family relocated to the waiting room, which was pretty much empty. Stephan arrived with Taco Bell and a hug. Uncle Mark arrived with more hugs. Nelson changed the channel in the waiting room from the “Royal Wedding of WIll & Kate” to the “Texas Rangers.”

About an hour into surgery the phone rang, Emylee answered and handed it to me. The surgical nurse was letting us know everything was going as planned and they were slightly ahead of schedule.

Two hours after they’d wheeled Kymee away, Dr. Obaid arrived dressed in his scrubs. “Everything went perfectly. No problems. We’ll be moving her to recovery in a few minutes, then in about an hour, she’ll be moved to a room where you can join her.”
We all sighed a breath of relief and praised God.

About 20 minutes later, Dr. Obaid returned and said, “We removed Kymee’s breathing tube. She didn’t like that too much, so we put it back. (What do you think he really meant with those words?) I am transferring her over to ICU for the night. You can move over to the ICU waiting room and they’ll tell you when you can go in to see her. It may be a while, so now might be a great time to grab a bite to eat or a coffee.”

Grandma decided the day had been long enough – so Stephan took her home. Mark and Kim stayed with our stuff, and Emylee, Nelson and I headed to Starbucks – just in the nick of time. They were giving their “last drink” call.

The ICU waiting room was packed – hardly a spot available. More “Prince William Royal Wedding” previews on the TV. They finally called us back – only Nelson and I to start with, then we could have no more than 4 by the bed at any time.

The ICU consists of a row of “rooms” divided by curtains. Their were a few glass front rooms where children with contagious disease were kept. It was a sad and daunting place. We were ushered to bed 14 – the corner room.

I had lost all track of time by now – I just wanted to see and hold my baby. Seeing – Yes. Holding – No. She had so many tubes and wires it was hard to see any skin on her tiny body. She was completely drugged out.

The Nurse told us that whenever she wakes up she fights the machines and tries to pull the breathing tube out. The ICU team had already re-intubated her once. So the goal was to keep her as drugged as possible with morphine and some other pain killer I can’t pronounce, so that she would not move or wake up. We were NOT to stimulate her or talk to her. We were also told we were not allowed to get naked behind the ICU curtain – Seriously??

We brought Mark and Kim into the curtained off room with us, just then Kyme began to stir. She thrashed on the bed – I grabbed one side of her and the nurse the other. We held her down as blood squirted out her mouth and nose and she fought us holding her down. She may not quite be 18 pounds, but she is a strong little girl! The nurse upped her morphine until she settled down.

Mark, Kim and Nelson left to go have a stiff drink – while Emylee and I settled in for the night.

April 28th
A couple more times Kymee began fighting and I helped the nurse hold her down. Every time she began fighting, she lost more blood – the nurse was starting to get worried that she couldn’t stop the blood flow. Around 2am the nurse called Dr. Obaid. Her gave her a surgical trick to stop bleeding, that she had never used before. Soak gaze in saline and some sort of prescription and place in her mouth. The pharmacy was called to make up the concoction.

Meanwhile the head ICU doctor on-call was called in because Kymee wouldn’t stop thrashing and pulling out her ventilator. He suggested it may be placed too far down her throat and that was why it was bothering her.

Around 3am, the ICU doctor, 2 nurses and the respiratory technician stood around Kymee’s crib and Emylee and I looked on. They slowing pulled Kymee’s respirator out mm by mm. She stirred, and continued to bleed harder. They retaped the breathing devise to her little face and stuffed her mouth with soaked gaze strips. They upped her morphine. She stopped breathing completely on her own – the machine took over. This was probably the scariest moment of my life. After a few minutes, the bleeding stopped, but she was still unable to breath on her own.

Kymee was to drugged to move, let alone pull her breathing tube out any more. She looked peaceful. I did not feel peaceful.

Around 6am, Dr. Obaid called for a status update. He told the nurse that she needed to take down the pain meds, or Kymee would not be able to breath herself. And after taking down the meds, they could begin weening her from the ventilator.

7:00 came a shift change – the night nurse had sat by Kymee’s bed all night, holding her whenever she thrashed.

Around 8 am, Dr. Obaid arrived. He stood next to Kymee in his suit, along with the ICU doctor, two nurses, the respiratory technician all in scrubs. Dr. Obaid assured us everything would be ok – but the look on his face said otherwise. I could see the worry in his eyes as the removed the breathing tube, and the day nurse had tears streaming down her face, and Kymee took her sweet time taking a breath, and then she cried. Dr. Obaid smiled and said, “That is the sweetest sound I’ve heard all day, if she can cry she can breath.”

It was the first time we had heard her cry, and it was a funny sound. It sounded almost like a newborn, not a 10 month old baby. Before the surgery she had had an open “Ahhhh” sound to her cry, now with a palate between her nose and mouth, the sound was small and hallow.

They replaced the ventilator with a nose tube which delivered oxygen and a prescription to open up her air passageway.

You could see Kymee improving all day by leaps and bounds. We were now allowed to hold her, and she responded to us as best she could. She was on heavy pain meds, but not comatosed with them as before. She still wasn’t eating at all by mouth, so there was no chance of her going home.

Dr. Obaid ordered another night in ICU.

April 29th

In the middle of the night she began running a fever, far above what she should. Our night nurse had returned, and she let me hold her as she stripped her and gave her a cold sponge bath, trying to bring down her temperature. Her fever broke after about and hour, but it would still spike every so often throughout the night. In the morning in broke for good. I however caught the chills, and just couldn’t get warm no matter what I did.

A family in church had provided us food – lots of
it. We ate in the ICU waiting room and shared our dinner with a couple of families there. One told us they had been living in the ICU waiting room for 3 months while their son had had 3 heart surgeries. This is the first home cooked meal they’d had in all that time. God multiplied the loaves and fishes and blessed so many with a simple meal.

In the evening, we were moved to a private room, where the nurses only check vitals and give pain medicine every 4 hours. So, we were able to get a little sleep. Kim switched places with Emylee and joined me on night shift.

April 30th

One by one the strings and tubes attached to Kymee had been removed, the glow-in-the-dark toe and the IV port disappeared last,

We sang along with Kymee:

“I’ve got no strings

To hold me down

To make me fret, or make me frown

I had strings

But now I’m free

There are no strings on me”

After 4 worry-full days and 3 sleepless nights, I was ready for a new challenge – caring for a recovering baby from the comforts of home, surrounded by my loving family and friends and an ever attentive barking hound dog.

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.
Cast All Your Anxiety

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.