He Hears

Crew passed his yearly hearing test with flying colors. We weren't worried.Is he so cute or what? Even with bed head? We were running late and I seriously considered using the dinglehopper I found in the bottom of my bag...

They put us in a little audiology booth and played funny noises in different corners. He looked at them, passing that part of the test before passing the ear-prong part.

Leprechaun Incognito

Who is this little guy, enjoying a green goatee smoothie in the bathtub?
Green Goatee Recipe:
1 mango
2 bananas
1 cup frozen strawberries
4 cups kale
1 and 1/2 cups water
1 little leprechaun to share it with

Disco Kinley

For D.A.R.E Week, Kinley really got into 70's day. She's our little Disco Roller Derby Queen, lovin' her blue and yellow eye shadow. I wasn't sure that I got the 70's exactly right, but we did our best. She has fallen in love with the hair style and wants to wear it every day. With the make up, of course.

PT Rehab

We had our first PT session at the rehab clinic this morning. It was awesome. We've made the right decision.

"I've Got My Eye On You!"

Unbroken

Last night I finished reading a remarkable piece of literature: Unbroken, by Laura Hillenbrand. It kept me up late reading and pondering for several nights recently, so I thought I'd write about it. It's the true story of Olympic miler Louis Zamperini, who becomes a WWII Air Corps bombardier serving in the Pacific theater. Whenever someone refers to WWII, I usually think of concentration camps, trenches, and Nazis. There were some pretty heinous atrocities committed by the Japanese Empire during the same time period, and there are soldiers and sacrifices that should not be forgotten.

As it turns out, my maternal grandfather fought behind enemy lines in the Pacific theater. I wonder what barbarity he witnessed and am curious as to whether it contributed to his alcoholism later in life.

Unbroken is an almost unbelievable odyssey of adversity, personal redemption, and the ultimate triumph of the human spirit. I learned a lot and couldn't help but mourn the loss of thousands of personal stories that will never be told. Meticulously researched, this book was as educational as it was inspirational.

From the inside jacket:

"On a May afternoon in 1943, an Army Air Forces bomber crashed into the Pacific Ocean and disappeared, leaving only a spray of debris and a slick of oil, gasoline, and blood. Then, on the ocean surface, a face appeared. It was that of a young lieutenant, the plane’s bombardier, who was struggling to a life raft and pulling himself aboard. So began one of the most extraordinary odysseys of the Second World War.

The lieutenant’s name was Louis Zamperini. In boyhood, he’d been a cunning and incorrigible delinquent, breaking into houses, brawling, and fleeing his home to ride the rails. As a teenager, he had channeled his defiance into running, discovering a prodigious talent that had carried him to the Berlin Olympics and within sight of the four-minute mile. But when war had come, the athlete had become an airman, embarking on a journey that led to his doomed flight, a tiny raft, and a drift into the unknown.

Ahead of Zamperini lay thousands of miles of open ocean, leaping sharks, a foundering raft, thirst and starvation, enemy aircraft, and, beyond, a trial even greater. Driven to the limits of endurance, Zamperini would answer desperation with ingenuity; suffering with hope, resolve, and humor; brutality with rebellion. His fate, whether triumph or tragedy, would be suspended on the fraying wire of his will."

Greetings, Middle Age!

Well, I had a nice birthday. A great birthday, actually!

What I wanted most was for Crew to cheerfully eat voluminous amounts of food and for the big kids to give me a few hours of blind obedience.

In the end, I got toddler puke across the dinner table and three diminutive barbarians that were something.... a little less than graciously subservient.

Nevertheless, it was an awesome day!

37. I can do this.

Happy Birthday To Me!

Justin got me the cutest birthday present! He knows I've wanted a nice apron and if this doesn't say "smokin' hot housewife", I don't know what does!
It came complete with SINGING birthday card:

On the inside it says "It's like I can READ MINDS or something."

I pretty much laughed myself hoarse. Justin, you are THE BEST!!

Birthday Boy

We had to get everything all ready for friends..Waiting patiently for their arrival!
First, the recruits made Birthday Jerseys with sharpies.
The whole team!
After making jerseys, we colored little pumpkins. Also with sharpies.

Happy Halloween Birthday!
Throw a little estrogen into the mix to keep things from getting too out of control...
And lead the troops downstairs for a basement obstacle course!
Happy birthday, little man! You are SIX YEARS OLD. Wow.

Storm Trooping

Just Doing A Little Laundry

Safety Fair

We went to our neighborhood Safety Fair and had a fun evening. The kids especially loved face-painting and the bicycle safety course. (That's a Y on her forehead).Some pictures are worth a thousand words. Others, like the following, just three: "Where's my cookie?"

Love This Kid Too

The Princess

Love this kid.

Birthday Blanket

Thanks, Grandma and Grandpa!

Dollar Store Treasures

Kinley has been earning (and spending) her own money recently. You know what they say about one man's junk...Her life is complete.

I Cut Kinley's Hair

She is super thrilled about it.
After a few days of adjustment, she has mostly forgiven me. Mostly.

Obedience

It's been an interesting week. Full moon and all.

I have asked Kinley and Tanner to team-teach a Family Home Evening lesson on OBEDIENCE next week. They are very excited. Not nearly as excited as I am.

Big Boy

Who is this kid lately?
Crew is progressing dramatically by the day, it seems. I can't even keep track of all of his "new tricks" anymore!

I really think that by Christmas we may have a walker/talker on our hands!! Crew is so close to walking. Equally exciting: he has finally put meaningful verbalization on his to-do list.

When people ask me how many words he can "say", I'm always at a loss to respond accurately. Some words he signs. Some words he signs and says together. Some words he says without signing. The biggest division of language is what he can say/sign with prompting and what he can say/sign spontaneously. Huge difference. He always knows what he is saying, but he usually needs a verbal reminder to say/sign it. We're putting the smackdown on the ol' point-and-grunt.

He is trying new words and signs all the time. And he is dispensing with signs as quickly as he is mastering words. For example, he no longer bothers to sign "more". He just says it now, "Mo!" He is following the language development pattern perfectly, just very slowly. For him it all starts with comprehension. Then signing with prompting. Then signing and speaking with prompting. Then signing and speaking without prompting. Then speaking without prompting. There are about 4 words that he verbalizes without prompting.

Every week he is gaining a few spontaneous words -- words that he can sign or say without prompting or reminders. He has long been able to sign "drink", "eat", "bath", "more", "outside", "night-night", "bye-bye", "book", and "movie" spontaneously. This week he busted out with "ice cream". I'm not sure what the real sign is for that, but we taught him to feign licking a delicious ice cream cone. It's hilarious. This week he also mastered verbalizing "iPad", without signing. Yes, it's true. Imagine him being carried out of the bedroom while he wailed over my shoulder, reaching for his "paaaaaaaa!" We are working on "help" and he's getting it very very quickly. It's an entire concept that he didn't understand a few months ago, and now he is saying it. His receptive language is very high. His substitute PT remarked "wow, he understands everything you say to him, doesn't he?" Yeah, we think so. His brain synapses are firing on all cylinders these days and it's incredibly exciting.

Something I'm looking forward to is the day that Crew calls me "Mama". He knows that I am Mama and he will smile and repeat "Mama" on request, but he has never called me Mama or called for Mama. Weird, huh? I'm ashamed to think of all the times that the hair on the back of my neck has raised when I have heard "Moooooooooooooom!!!!" whined from the big kids. I have taken a lot of things for granted.

Last Friday we met with his new preschool teacher and speech therapist. Their goals for him were right in line with our expectations and desires, so we feel excited about that. In fact, they were even more aggressive than we dared hope. For example: with the way things are going with him lately, they thought our request to having him verbalize 60 words spontaneously by the end of the year was a little unambitious. They are pretty sure we can double or triple that. I really liked both of the ladies and I know that Crew is going to love the whole preschool vibe. As deep as my anxiety about this whole transition runs, I am crazy excited for him and wish we could just get going! November 15th is the Big Day!!

Virginian Invasion

Matt, Kim, Karlee, and Colton came to town!

Who wouldn't love this kid?Our kids really enjoyed spending time with their cousin Karlee.
Kinley and Tanner informed me that they would like another baby brother or sister. (Cough, cough!! Sorry, kids!)
We were very lucky; Matt and Kim decided to have Colton blessed in Utah before they returned home! We met them in Heber and it was a very very nice afternoon.

Kinley was able to take a nice nature walk with Papa B., which pretty much made her year.

Love you guys! Miss you!

October 15th

Today is Pregnancy and Infant Loss Awareness Day.

Always remembering our son and all of our little angel friends who were gone too soon.

I Stand All Amazed

When our youth group was recently invited to organize a Halloween Carnival for the Special Needs Mutual group, I had a very specific image in my head. I imagined that we would be greeted by 10-15 disabled teenagers from our stake with a handful of youth volunteers from local congregations. I was completely unprepared for what we experienced.

We arrived at the stake center and were greeted by more than 100 Special Needs children of God---teenagers, elderly, and everything in between. They were accompanied by more than 100 youth, ages 16?-18, who had been called to serve in long-term, unpaid capacities as companions, mentors, and friends for these special folks. Each Special Needs Attendee had a young man or young woman by their side at all times, someone specific that they can always count on to be with them for these weekly events. The youth were attentive and clearly very comfortable in their surroundings.

As I observed the group as an outsider last night, I marveled at the tenderness and love between the inspired companionships. My emotions were overcome a number of times; I gnawed half way through my bottom lip and had to leave the gym three times to gather myself. I found myself wishing that my brother could have experienced such warmth and acceptance. I wished that our community could have embraced the handicapped individuals that lived in my group home so compassionately. I have worked in care facilities and volunteered in deaf schools and orphanages where special needs children were hidden away from polite society. What I witnessed last night was awe inspiring.

It is my belief that the veil between Heaven and Earth is very thin for these very special spirits, that they are much beloved by our Heavenly Father. These precious children have always had my admiration and my reverence. I have been blessed throughout my life with many sacred opportunities to love, advocate, and serve within the special needs community and I believe that we will be held accountable in the next life for how we treat or mistreat God's most special children.

Today I am raising a special needs son with a very promising (though uncertain) future. Last night was an answer to my anguished prayers. I know that I am living in a community that will continue to support and accept us throughout our adventure. I am living in a day and age where disability is more widely accepted and accommodated. My children will be attending high school where homecoming queens can have cerebral palsy (2010) or Down Syndrome (2011).

Crew is loved for being who he is. The neighbor children don't mock him; they cheer him on. Youth and adults don't shy away from him; they are drawn to him. Our friends and family don't pity his plight; they rejoice over his successes.

To all of you, near and far, who have traveled with us along our journey, you will never know how much we appreciate your encouragement and love. There have been many times that your notes, laughter, visits, hugs, humor, comments, FB messages, texts, emails, and phone calls have made all the difference. You have often been the answer to a specific prayer.

We are blessed.

Here, Piggy Piggy

It's been two months since we redoubled our efforts to fatten up Crew, and the weight gain results are in:

Crew: 14 ounces.

Mom: 9 pounds.

Preschool Questionnaire

They are kidding, right? This is a joke, yes? They don't really expect me to fill out Crew's whole life and diagnostic history on this table... do they?

Get Off My Fat Back

Everyone knows that Crew's weight issues keep us up at night. We know he is small. We know he is underweight. We know he is extraordinarily active, never stops moving, and burns calories as fast as he ingests them. We know that he needs more bulk and strength in those chicken legs.

We know.

We know that you know too.

But guess what else we know?

All of our kids are skinny. We don't starve them. Obviously. Nevertheless, they are rib-ticklingly skinny genetic Lilliputians. In our myopic mission to fatten The Little Prince, we sometimes forget the significant fact that we are locked in mortal combat against pygmy ancestry.

The average weight of an 8-year old is 57 pounds. Kinley is 46 pounds (blogged with her permission). She is 20% below "average".

The average weight of a 6-year old is 46 pounds. Tanner is 36. He is 22% below "average".

The average weight of a micropreemie boy with a very low birthweight at Crew's adjusted age is 28.6 pounds. Crew is 20 pounds. He is 31% below "average".

We will continue to chase him around the house with forks full of food, calorie-pack his meals, and find otherwise creative ways to increase the amount of food that passes through is lips. But expecting our tiny twig to pork up to sumo wrestling weight by Christmas is probably a little ambitious.

And a little note to each of my children: Enjoy the metabolism while it lasts.

Rehab Evaluations

I am finally getting around to posting pictures of Crew's OT and PT evaluations at the pediatric rehabilitation facility. Looks like a pretty fun place, huh?

Here he is performing for OT Lisa.



This is Crew working out with PT Megan. I took these cute pictures between tantrums.

You're gonna love it, Crewzer. I promise.