Christmas 2008

Christmas 2008

Allie's Balcony

In case you think your kids might not be safe when they come visit...

Allie's new digs

Allie had an amazing trip across country. It couldn't have been done without Charity and Aaron and the charming and beautiful Susan doing the lion's share of the driving while I sat with Allie and gave her naps and sang along with her Veggie Tales video. We drove two vehicles 3300 miles in six days. What a trip.

Settling in has been a little difficult, however. Our expectations have been a little flip-flopped. We thought the trip was going to be rough and the settling in to a new place easy. But the opposite is what we've experienced.

Friday will be two weeks since we moved in. And Allie is starting to get into a routine. Please keep praying for us. We haven't been able to get her out of the house much. Our first attempt to put her in her stroller resulted in one of her infamous melt-downs. But I got her into it yesterday and walked her around the apartment complex. It was a rough start, but she settled into it as we kept rolling. Tomorrow she has her first appointment with a new doctor.

Having friends and family so close is awesome. Sometimes it feels like we were never gone and some times it feels like we were gone for ten years. Life is so much different now. Good different.

There Goes the Neighborhood

Allie has a new visitor twice a day. Grandma Yolanda is not only Allie's biggest fan, but also a close neighbor. We made arrangements to move close to Grandma before we got back down here.

Yolanda is the best Grandma ever. She had Allie's bedroom all set up complete with a bedroom set and fantastic new additions to Allie's wardrobe hanging in the closet.

Thanks for giving us a great welcome, Grandma.

Baby Dedication

Just a quick note: Allie will be dedicated to the Lord (Christened) on January 18, 2009, at Calvary Chapel Jupiter at the 11am service.

Allie's Latest Trick

Aaron and Photoshop

This is a product of my son's artistic (?) mind...

A Moment in a Day with Allie's Family

Allie Cameo

Allie has a cameo appearance in this video shot by Uncle Aaron.

Allie in a swing

Here's Charity and Allie at the park.

We finally got Allie to start hanging on to the swing by herself, now she thinks it's funny to let go because it gets a rise out of me.

Allie in a Hammock

Charity arrived Friday. She set a hammock to sleep in. Allie gave it a try.

Rx: one scoop of ice cream

That was the prescription Allie was given by her eye doctor today.

She did amazing during the exam. She was cooperative when the nurse dilated her pupils which I thought was a formula for one of Allie's infamous meltdowns.

When the doctor did his thing, Allie sat on my lap quietly curious about what he was doing.

Last year I blogged about her appointment with this doctor. He declared her legally blind. Her optic nerves were irreversibly damaged. That in addition to cortical visual impairment (CVI) presents significant challenges.

Here's what happened today. The doctor was using his little gadgets and said in a very off-handed way, "Her optic nerves are pink and healthy."

I said, "What?"

"Yeah, they look good."

"You know, you said her nerves were pale and atrophied last year," I reminded him. "You sent us a copy of the letter you sent to child services."

He checked his records and said, "Well, I retract that diagnosis."

And that was it.

But we believe in prayer and miracles. Too many of you have been touched by Allie's story and have been motivated to pray for her. And the Lord has heard you. Thanks for being a part of our day of good news.

Slide swingshow

I mean swing slideshow :)

Allie on the Swing

Allie's New Chair

Allie juts got this new chair in this week.

It's an activity chair from Leckey. It's taking a little bit of getting used to for all of us.

It's very low so we have to sit on the floor to feed her. But that's nothing new.

The chair comes with a huge table top tray. She can play with toys while her back and arms are supported. This is perfect for developing motor skills.

But she fights us a little when we put her in the chair. She tries to crawl out as we're strapping her in. But once she's in, she play for a good time.

Talking Back

The charming and beautiful Susan shrieks; Allie answers. That's what's going on in this video.

I'll warn you that it's a little shaky and it might make you queasy. I was bouncing Allie on a fitness orb (that jump starts her shrieking) while shooting video with one hand. Allie's extreme cuteness more than makes up for the poor video production.

Nothing but fun and games at our house.

Allie eating

We've been having issues trying to get Allie to eat the past few days. We've run to the store to mix up her food options. We've fed her only the stuff we know she likes. But nothing has worked.

Today we gave her a spoon to play with. We give her a spoonful. And she chases it with her own spoon. The result: this mess and a full belly.

On the Swing

It's been a little while since Allie has been up to the park. She's bigger and fits in the swing differently now. She's also more limber than she used to be.

Look at how she hangs on to the bars. I have to fit her hands to the metal, but once she has a grip, she hangs on tightly.

Here, Allie is starting to lean back. She loves to throw her head back as she swings and go for that upside-down feeling. What a character. She lacks control of her body, but she loves to push it to the edges of exhilaration. She's a true thrill seeker.

This is what she's going for. As she swings all the way forward, it must feel like she's getting ready to flip over backwards. But as soon as it feels like she might, she swings back down the other way.

You know the feeling.

Do you ever miss it?

Here's some video:

Downtown Walk Three

Allie started doing this rally cute thing a couple of months ago. She makes a little shrieking sound. It's a call out. She expects us to answer back. It reminds me of those recordings of dolphins under water calling out to each other. Allie does this to figure out where we are in the house; whether we're upstairs or in the kitchen.

It's funny because she used to make a sound with just one pitch. But now I vary the pitch of the sound I make to high and low, short and long, and Allie imitates it and keeps up. It's funny and exciting at the same time. She doesn't have the motor skills yet to make words, but she still has fun while trying to communicate.

It's unbelievable how much personality this little booger has.

Downtown Walk Two

Allie is so at home in this stroller. The charming and beautiful Susan and I were thinking back at how hard it used to be to go out with Allie. A year ago, we couldn't walk more than three blocks or so before Allie would have a meltdown in her stroller. It was so frustrating. I felt chained to our apartment. It got me so angry. And then I'd feel guilty about feeling worse about my situation than what this poor child must be going through to cause her to cry so bad and so often.

Here in this picture, Allie is so at ease. See her little tongue sticking out. She's making a "clucking" sound. That sound means: "my world is wonderful and I'm soooo glad my Pop-pop is here even though he won't get out of my face with that camera".

Here's video of that. And again, the charming and beautiful Susan didn't know that I was digitizing all of her actions.

tee-hee.

Downtown Walk One

The charming and beautiful Susan and I took Allie for a walk downtown in Allie's new stroller.

I have this camera that I got for father's day that I love. It takes little videos, too.

The fun thing about it that the charming and beautiful Susan never knows if I'm taking pictures or if I'm shooting video. So you guys get to see the Suzie I see; charming and beautiful.

Allie's New Bingo

Allie got a sweet new ride today. This Bingo stroller is state of the art. It turns on a dime. It flattens bumpy ground. It gives Allie a full view of everything around her.

  Brian and Melissa took precise measurements. This chair custom fit to Allie's little body.

We took Allie for a test ride and she loved it. The science behind the development of this stroller is incredible. But the thing is huge. But it fits no problem in Allie's new van.

 

This is Allie and Melissa working on balance...

Gettin' Dolled Up

Here's the charming and beautiful Susan getting Allie ready this morning.

Save some kisses for Pop-pop.

A short greeting from Allie

Our Big Day

IT'S FINAL!

We thought this day would never arrive.

We stayed just a few blocks from the courthouse and enjoyed the down hill walk. We were first on the docket at 8:15.

We were first to get to the courtroom. The marble hallway shined. We were met by a lady with a clipboard, proving her authority, in hand. After we checked in, other families filled the hall, excited, knowing that today marked the first day a new kind of life.

We went into the courtroom and were sworn in. The judge greeted us with a broad smile on her face. Her greeting put us at ease, but her robes conveyed authority. She was a matron with state authority to put families together. She spoke to us tenderly and solemnly. We stated our names. She asked us if all the information was true. She authorized an order. She made Allie our daughter. The charming and beautiful Susan and my emotions melted. We weren't expecting that. We didn't know what to expect.

 

 

Another Kiss Dis

Here's Allie finally giving up on playing hard-to-get letting the charming and Susan in close for a kiss.

Here's Allie ecstatic after springing her little trap on the unsuspecting charming and beautiful Susan. She almost bit her lips off.

Allie exudes personality. She may have special needs and may even be a little slow to respond. But she is definitely not slow of mind. She doesn't miss a thing.

On Wednesday we'll be in family court with Allie down in San Francisco. A judge will bring the adoption process to a close. Allie will be our third child.

check out this Kiss Dis, too.

Allie sports a TheraTog

There's the mild-mannered Allie, and then there's Super-Allie. This is a TheraTog suit designed to provide optimum alignment and posture. Melissa broke this suit out for experimentation during Allie's session last Thursday. It was big fun for Allie. She loves the sound of velcro; she thinks the ripping sound Velcro makes.

Which reminds me:

Did you ever have one of those cloth and Velcro wallets that were so popular when I was a teenager? One time when my teacher bent over in class, I opened my wallet making that Velcro ripping sound. That teacher stood up so fast grabbing her behind thinking she was covering up a tear in her polyester pants suit... What a crack up. My dad heard from the dean of students so often they were on a first name basis.

Anyway, that was a little off the subject. What I meant to tell you is that I'm pretty sure Allie's suit is where Olympian Mark Phelps swimsuit got the inspiration for his winning swimsuit.

I wonder if he pulls loose those Velcro straps near the girls volleyball team to make them think their little suits are ripping.

This started out as a post about Allie. Here's some video of her and Rena.

Trinidad, CA

Allie, the charming and beauitiful Susan, and I have been doing a short day trips in the new van for the past few weekends. Each trip, we drive a little further. Today we did 80 miles round trip with a stop in Trinidad (pop 314), CA, for a short walk on the beach. Allie did phenomenal.

Commando Crawling

These are videos I shot today of Allie at physical therapy.

Since I'm an ex-Marine (once a Marine, always a Marine, my father the twenty year lifer always says), all of my off-spring WILL know how to:

• low crawl
• shoot a weapon while covered in mud
• field strip an M16 in thirty seconds or less
• sing the Marine Corps Hymn while laying at attention in bed

So here's video of Allie learning how to low crawl...

Latest Allie Occupational Therapy Update

Rena completed a thorough review of Allie's goals and achievements.

Summary: Ali is now two years old and continues to make progress towards her goals. She has increased muscle tone and limitations in fine motor coordination and self care skills.

Past Goals:
1. Reach to cause and effect toy with 80° right shoulder flexion: met
2. Reach to cause and effect toy with 80° left shoulder flexion: met
3. Grasp 1 to 2" cube or toy using a radial digit grasp: improved but not met
4. Use both hands together when offered a light weight 12" toy held to her fingers: not met

Current Goals:
1. Finger feed 6/6 Gerber Puffs or other soft finger foods independently
A. Finger feed 3/6 Gerber Puffs with moderate assist
B. Finger feed 4/6 Puffs with minimum assist

2. Spoon feed 2 ounces of thick puree with moderate assist
A. Spoon feed 1 ounce of thick puree with maximum assist
B. Spoon feed 4 bites of thick puree with moderate assist

3. Demonstrate a radial digit grasp on cube or toy
A. Consistently use a radial palmer grasp with cube or toy

4. Independently hold a light weight 10" toy with both hands
A. Hold a 10" light weight toy with both hands with minimum assist

General: Ali is now two years old and scheduled for twice weekly occupational therapy. She continues to make progress towards her goals.

Caregiver Concerns: Her grandmother notes that although Ali now tolerates taking a bath, it has become increasingly difficult to support her in the tub. Ali leans towards the right when sitting in her car seat and her grandmother would like her to be safely supported when in the car. She also wants Ali to be more successful feeding herself.

Range of Motion: Ali's upper extremity range of motion is within normal limits.

Muscle Tone: Ali has increased muscle tone in bilateral upper extremities. All shoulder motions, forearm supination, and elbow extension are tight at end ranges. Although she will open her hands, her thumbs are often in her palms in the left more than right.

Fine Motor Coordination: Ali is demonstrating increased curiosity about her environment and is using her hands more frequently to explore and play with toys. She has met her goals of reaching with her right and left arms to 80° or more to play with cause and effect toys. Although she is beginning to visually focus and occasionally track moving objects, her vision is not consistent or functional. She frequently relies on her auditory and tactile senses to relate to her environment. Ali's ability to grasp and release is restricted by flexor tone in her hands and thumbs. Although she volitionally opens her hands for toys, she lacks complete active thumb abduction and opposition for more refined and age appropriate grasp and release patterns. With her right hand, she has a functional lateral pinch but not the graded control and coordination to finger feed independently. With her left hand, she pinches with her index finger pad to the dorsum of her thumb IP. Ali is not yet using both hands together to grasp and explore large toys.

Activities of Daily Living. Ali feeds herself Gerber Puffs and other finger foods with maximum assist. She is normally handed finger food, but is starting to occasionally reach to it on her tray. She often gets the food near her mouth but has difficulty consistently targeting to her mouth and coordinating the release of the Puff into her mouth. Ali was placed at a table in a Snug Seat to assess her abilities to use a spoon. She was given a bite of chocolate pudding and then the spoon was placed into her hand. Once the spoon is loaded for her, Ali brings it towards her mouth. She was able to target her mouth with minimal assist for a couple of bites, but overall needed hand over hand assist to get the food loaded and into her mouth. Ali is dependent for the remainder of her self care needs.

Recommendations: Occupational therapy to continue with twice weekly visits to
1. Work on the above goals
2. Obtain bath chair, car seat, and feeding chair
3. Monitor range of motion, fine motor coordination, and self care skills
4. Update her home stretching and activity program
5. Consider Joe Cool type of splints to help her open her hands for continued
advancement of fine motor and self care skills

Trip to the South Jetty

We're so proud of Allie. We took her for a pretty long ride (forty miles round trip) around the south end of Humboldt Bay out to the South Jetty. Allie did great. She was happy, self-soothing, and looking around the whole way. Both ways.

If you've followed any of Allie's story, you know that our trips have been very short. Long trips with her are a nightmare. Next month, we have to ride down to San Francisco for an appearance before a judge. This is the final step in Allie's adoption. We're not looking forward to the trip. But yesterday's was the longest trip she's taken without pushing her to the limit and gives us tremendous hope. We usually don't venture more than ten miles from home with Allie due to her tendency to have an emotional and physical meltdown. But she's made tremendous progress over the past few months. And she really likes riding in this new van much better (who wouldn't?).

 
40.6 miles round trip

Charity and Allie

Here're my girls...

Twirling Allie Slides

Watching Cartoons

M-I-C-K-E-Y

M-O-U-S-E

An Update

The charming and beautiful Susan and I want to give an Allie update. As you may know (or may not know), Allie is diagnosed a quadriplegic with infantile cerebral palsy. In addition to this, Allie has been declared legally blind due to optic atrophy and cortical visual impairment. It's taken us some time to process this information in a way that we can share it without falling apart.

None of these declarations about Allie's medical and physical condition leave us hopeless. We are enraptured with overwhelming affection for this little girl. To the degree of tragedy we've walked through with her is our degree of love for her. It's beyond description.

Since she has no trunk control, she's been fit and measured for some special equipment. We have on order a special stroller, an activity chair for around the house, and specialized bath-chair. Although she is not able to sit up by herself, she is developing arm, hand and head control. With her trunk supported by this equipment, she'll be able to focus more on developing and maximizing motor skills.

The new trauma we have been coming to grips with is the idea of trading in our sexy compact car and acquiring a mini-van. We made it through the childhood and teen years of our two kids without establishing ourselves as suburbanites by purchasing a mini-van. Now it looks like we're forced to make that transition because we need something to transport Allie's new equipment. To compound our mini-van trauma, I've put my wonderful red Honda VFR super-bike on Craig's list to help underwrite this sobering mini-van acquisition. Pray our emotions and marriage survive the status change of moving from a glamorous small car to a mid-sized soccer-mom mobile.

On another subject, I've posted a video of Allie and me. I call this video "Bouncehouse."

Learning the Way of Christ

I posted a review of Yancey's book Soul Survivor the other day. Yancey's writing has always ministered to me, and during the past year with what we've gone through with Allie, more than ever.

One of Yancey's mentors he writes about is Henri Nouwen. This is what Yancey writes on p. 295.

While living in Peru, Nouwen received news from Holland that his sister-in-law had given birth to a daughter with Down's syndrome. He wrote the family these words, unaware that in a few years they would seem a prophetic insight:

Laura is going to be important for all of us in the family. We have never had a "weak" person among us. We all are hardworking, ambitious, and successful people who seldom have had to experience powerlessness. Now Laura enters and tells us a totally new dependency. Laura, who always will be a child, will teach us the way of Christ as no one will ever be able to do. (From Gracias!)

The above quote is something the charming and beautiful Susan have come to grips with. In fact, we are grateful for this new perspective; one we never, ever would have had without the entrance of Allie into our lives.

This won't be the last time I write about this subject...

New Kicks

"Wait a minute, Mr. Postman!..."

Our helpful neighborhood letter carrier dropped off these little Chuck Taylor Converse All-stars today.


I told Allie that Pop-pop used to style in these exact shoes when he was little - and when he was thirty-five. And maybe he'll get a matching pair on his next birthday when he's 43.


Allie may have rolled her eyes at that idea. "Oh grow up." I'm pretty sure she did. The charming and beautiful Susan definitely did.


"They're timeless," I said.

"As is your immaturity."


Anyway, thanks Ebay.

And most of all, thank you, Grandma Yolanda.

Roll Over!!!

Allie has been learning to roll over, but most of the time it happens at random. She accidentally gets into position and pops over from front to back. But yesterday, I learned that with some coaching, encouragement, and cheer leading, she'll do it.

Below is a video of one of these efforts. It's the third time today she flipped over with me cheering her on. After the first time today, I ran for the video camera and I immediately forgot how to work it while she rolled over a second time. We tried to get her to do it again, but she was too tired from earlier efforts. Then, after a rest and some breakfast, we tried again. The video below is the result:

Allie Sings

All of Allie's toys make noise. We had a rule at my house when my kids Charity and Aaron were little: if you buy a toy that makes noise, it lives at your house. That was to head off any ideas my dad or parents-in-law might get to make us crazy at Christmas time by smuggling annoying noise makers disguised as "gifts for children" into my house. But the real idea was to pay me or the charming and beautiful Susan back for some decades-old transgression.

But we've come full-circle now that we're raising a baby in our forties. We want Allie to make all the noise she can. And that she does as you'll see when you watch the video below.

Allie's Two

Today we celebrated the second birthday of our precious little Allie. We have two birthdays this week. Charity and Allie.

This little girl is the most precious gift God could have ever given us. Susan and I were suffering from empty nest syndrome way too early in life so God, in His infinite providence and wisdom, gave our lives new purpose and fresh meaning. It is difficult to contain our excitement when we think about the possibilities and tremendous hope that Allie's little life will bring. We're thankful for the hope she has brought already.

What are you thankful for these days?

Whooping Like an Indian

Here's the charming and beautiful Susan bouncing and whooping it up in the living room.



Can you tell I like having my new camera with the cool video feature?

Hairdos

pigtails and graduates

Here's a video of Allie pinching little crackers between her fingers and feeding herself. This is huge progress. This wasn't happening even a couple of weeks ago.

The pigtails are courtesy of Grandma Yolanda.

Charity's 21

We sent this homemade happy birthday wish to Charity's phone this morning.


And then I sang her our traditional birthday song. Not the one you sing. We sing the Beatles Birthday Song.

Charity is living and working down in Berkley these days. She's doing well.