Allie

Life here with Allie has settled into a routine. Mondays and Thursdays is physical and occupational therapy. Tuesday and sometimes Wednesday is speech therapy. Friday an educator comes to train and re-train Allie's brain functions and motor skills. Every other week a nurse comes in and get Allie's weight and evaluates her progress.

Molars have been working their way through Allie's gums. One cut through a couple of weeks ago and one is taking it's sweet time coming through on the other side. The poor kid is miserable. And if Allie ain't happy, nobody's happy. I'm praying that once that tooth cuts through, she'll get a bit of a break.

One positive breakthrough is that Allie is now taking naps everyday, twice a day, in her crib. She used to take short naps in our arms during the day, but as soon as we tried to lay her down in her crib, she'd wake up and naptime was over. But now, we're able to lay her down and walk away. This is huge! Today she took a record long nap for 90 minutes. I was at church when this happened so the charming and beautiful Susan got 90 minutes to herself. She was like a new woman.

On January 18, Allie will be fitted for leg braces. Her doctor thinks there is a strong possibility that Allie will walk before she sits or crawls. This is pretty exciting. When supported, Allie stands up and takes steps. She even puts one foot in front of the other on the tread mill. Last time we tried it, she walked for about three minutes on the treadmill. Cool beans.

We took Allie to the beach today. It was about fifty degrees and super windy. The sun was bright and the sea was rough. There was so much sea foam blowing around it made me think some prankster dumped a boatload of dishsoap in the waves. That would be a colossal prank. Allie loved it. Even though she couldn't see the ocean clearly, she could feel the sun and the brightness, her ears were filled with the sounds of wind and sea, and her little face bore the brunt of a chilly sea gale as it turned her cheeks rosy. Her face froze in an open mouthed smile. She was so beautiful in the poncho and little hat that her Grandma Yolanda made for her with amazing talent and tender loving care. 

Allie's First California Christmas

Charity bought Allie this red Santa coat last year and Allie can finally wear it this year. Allie had such a blast having family around her. Charity opened each one of Allie's gifts with her and then they tested each one out.

Of course, everything Allie has either lights up or makes noise or both. When Charity and Aaron were growing up, if you bought one of them a toy that made a bunch of noise, that toy got to live at your house and the child could come visit the toy at your house. That was the rule. I really had no use for noisy toys when my two kids were little because they were noisy enough. That comes from their mother's side. But Allie, it turns out, is the center of the universe.

Not that Charity and Aaron weren't at the center of something. While Allie is the center of the universe, Charity and Aaron were more like the center of their own solar systems. Their mother and I were in orbit around them. Like a moon. But don't tell Susan I said that since this time of year with holiday eating and all, everything I say tends to lead into a discussion about diet.

"I think the car needs a tune up."

"Are you saying I'm fat?"

Pictured at the bottom of this photo is a "jack-in-the-box" sent to Allie by the charming and beautiful Susan's mother, Dorice. As you can see, Charity is already startled by the sudden appearance of "jack" even though he hadn't yet made his startling entrance. Allie, so far, thinks this is just something that makes noise. She doesn't know about the "pop-goes-the-weasel" part.

So far, Allie thinks "weasel" is another name for Grandpa.

"How did you get Pop-pop in there?"

Charity is naturally gifted with musical talent and we expect the same from Allie.

I, on the other hand, can play a "jack-in-the-box".

This is a cool toy. It lights up and plays a little song. We let it live at our house since we want Allie to stay.

This is my sister and me. My sister is the one with the hair.

This is that charming and beautiful Susan I've been telling you so much about. But she wouldn't be happy about me posting this picture of her acting scary so please don't say anything to her about it.

"Mum's" the word.

Aaron's here :)

Aaron got here yesterday. Allie is very happy. Everybody is pretty much stoked.

Allie's nurse came by this morning while Susan and Aaron were at Target. Allie weighed in at 20 pounds even which is three ounces heavier than two weeks ago. She's moving in the right direction.

Missed this booger

I was only gone three days and it seems this little girl changed so much. Have you ever noticed how much kids change when they're little? A few days, a week without seeing the little person growing up in your house feels like eons whiles you're apart, and then when you get back, and everything is different.

Have you ever seen 2001: A Space Odyssey? Leaving Allie for any length of time is like passing through a "Star Gate" coming home to discover an older version of the baby I left. What a trip.

A Kiss for Julia

Got this text from Julia today:

"Please give Allie a kiss from me!"

Well, Julia, kiss this.

Bath tub Mis-adventure

The charming and beautiful Susan and I just had the fight of our lives with Allie. Allie is kind of freaked out by taking a bath in the tub - it could be that voices sound different in there or that the fan is running or being in water - so we purchased a little blow-up tub so we can give her a bath in her room where she is comfortable. As soon as her feet hit the water, she flipped out. I mean FLIPPED OUT flipped out. She screamed, hollered and yelled so much that she projectile vomitted all over us, in the water, and on herself.

We decided to continue with the sponge baths for a little while longer.

Medically speaking, Allie continues to move forward. She was seen by Dr. H. who oversees the physical therapy unit Allie goes to twice a week. Last time we saw him, I thought I might have to thump him. I've become a little over-protective of this baby these days. At our first appointment with him, he roughly flipped Allie over on her tummy and she freaked so bad I had to take her outside and swing with her to get her to calm down. And he didn't offer us a whole lot of hope, either. And we were a little hope deprived back in those days.

But this time, it was totally different. He talked about the possibility of Allie walking before she crawled, about braces, about goals, and he talked to us in terms even I could understand about the brain and how a child's brain heals. It was and educational, hopeful, and upbeat conversation.

Here are Allie's current challenges and what you can be praying about:

Sitting. She sits with support and she holds her head up better than ever. But she needs to gain balance and the instinct to stop herself with her hands when she leans to far left, right, or forward. She puts some pressure on her right hand and has developed more trunk strength and coordination when leaning right than left.

Tummy-time. Her g-tube is out and she spends more time on her tummy, but doesn't get there on her own or roll off of her tummy without assistance. But she is content there and has greater range of motion with her arms than ever.

Eating. She is eating better than she ever has. We feed her soup, avocados (yep), cereal, bananas, cookies and these baby cheeto things. Her tongue and mouth are working great. She gained a half pound in two weeks. I thought for sure she gained more, but she's doing okay and is definitely more active.

Sleeping. She gets a lot of sleep at night. She only wakes up once or twice. She is an early riser. Therefore, so am I.

She's sleeping right now, as a matter of fact, in the arms of the charming and beautiful Susan.

We appreciate all your prayer. Allie's medical crew is continually amazed by her progress. I have plenty of opportunity to testify about prayer and the power of God.

Allie & the Farting Santa

The charming and beautiful Susan unpacked the Christmas decorations last night after Allie was down. We we're so happy when we found the Farting Santa we unwrapped at a Yankee Swap office gift exchange either last year or the year before, I don't remember.

But while you all are out there getting Baby Einstein learning toys and trinkets tainted with lead-laced Chinese paint, we'll be giving Allie some real-life-lessons.

Got My Girls

Q: What does a man need to do to make himself feel inferior, dis-respected, and misunderstood?

A: Surround himself with a bunch of females.

I am always totally surrounded by females whenever I'm around family members. There's my sister Jennifer, the charming and beautiful Susan, the center of my universe Allie, my nieces Megan and Ambir, and now, Charity.


I can't wait for Christmas to get here. My son will arrive and strengthen the male numbers here. But until then, the only male ally I have is my niece Megan's fiance Jed (who, by the way, is the nephew of a high school buddy of mine; this is a small town). But, conveniently, he's at work a lot leaving me to fend for my self amongst all this estrogen.

This will be the first time since 1989 that I will spend the holidays with my sister and her girls.

I'm ecstatic to have Charity here. The charming and beautiful Susan and her had a mother/daughter day.

Crackin' Up

Whenever I don't blog for a few days, one of you is so kind to email me and hold my feet to the fire. It's funny how a few days of no activity on the internet is like an eternity. While one human year is seven dog years, one dog year is seven internet years. So, one human year is like forty-nine internet years. So not posting for 4 human days is like not posting for 196 internet days.

Get it?

Keep up.

Soooooo... everything is okay. We're really happy. And to prove it, here are some pictures snapped this week...


This is Allie in jeans. She knows she looks cool.


"Food is great!" Allie is finally on board with eating. Sometimes, we have to get creative and energetic. She sometimes needs to be entertained while eating. (see next frame)


Entertaining babies is right down my alley. Kids see me for who I am. Allie gets me. Allie is the most forgiving and understanding person in my and the charming and beautiful Susan's universe.


While I was busy not blogging, I was having a bunch of fun.

Soup Face

Allie has been doing great the past couple of days. Thanks for your prayers. She's gotten a reprieve from the teething pain and has been flat out chowing down. I've been careful to keep my fingers away from her mouth so I don't lose any digits.


She changes loyalties without notice or any kind of regularity. One day she's my baby. Then she's the charming and beautiful Susan's baby for a week. I don't know what it's going to take to buy her loyalty so that she's always on my side. But she's definitely figured out how to keep me under her thumb. That's where I live.

Lentil soup is Allie Soup Du Jour. Everything the charming and beautiful Susan sets before her is devoured in short order. I've been the one feeding her the past couple of days so I wear a good amount of what Allie eats. She likes to spit. I've decided not to teach her that spitting is bad because I'm having so much fun spitting back.

This is the soup Susan is whipping up for Allie in a bullet. We give her regular food but we puree it.

Working on that Six Pack

If you think Allie was unhappy about this picture, you are assuming correctly. What young lady likes the world to see her in her diaper first thing in the morning before she has a chance to take a shower and put her make-up on? Allie is no exception.


What we are looking at is a little sore where Allie's mic-key button used to reside. We are amazed at how quickly this hole has closed up and disappearing. I thought that she was going to have two belly buttons. Or that her belly button was going to have a "mini me" in the vicinity.


Here's what's cool: Allie loves to lay on her belly now. We can leave her relaxing on her front side for longer than we can on her back. The next step for her is learning how to turn herself over. That gets a little frustrating for her. She wants to move and do so much, but she is still so limited.

I have no doubt that the daily prayers of all our friends are what is helping Allie progress and heal. One other request you can pray for is that she'll get through this teething phase quickly. I know its a normal part of life for a growing baby, but in Allie's case where she needs so much attention and her mood and attitude contribute so much to her learning and recovery, teething has been a bit of a set-back.

Avocado Face

I know this looks a lot like the bowl of guacamole on the Chili's starters menu, but it's really Allie's face covered in smashed avocados. That's why you don't see any chips.


Allie is teething and refused to eat today. That's not helpful when she is supposed to be putting on weight. One of you emailed me one time when I wrote about her need to pack on some pounds and suggested we feed her avocado. I love avocados. But the charming and beautiful Susan doesn't. That's her only shortcoming. But there's a weird truth we all seem to live by; we think that whatever we don't like, nobody should like. I, of course, thought Allie would love avocado. But my wife had her doubts. Allie is hard to please when it comes to the eating department. But Allie surprised us all (not me) and chowed down that green fruit of the gods.


That bit of avocado was the only solid food Allie ate today. Except some cookie. Nothing beats a cookie.


The poor kid is teething and that's part of her finickiness problem. But the good news is that Charlene Nurse Superior weighed Allie today and she had gained 8 ounces today. That's cool because she's been losing weight over the past month. And Charlene Nurse Superior was none too happy 'bout that. But today, Allie is back on track.

Thanks to all of you that were praying.

By the way, that's not the charming and beautiful Susan's hairy hand. Her hands are delicate and dainty.

this kid's gotta eat

This kid can be such a booger. We really need her to eat, but she gives us such a hard time. We really need you guys to pray because I tried to bribe Allie with a dollar bill to get her to chow down and she wouldn't bite (no pun intended). Then I tried a ten and no deal. She scoffed at me when I flashed a twenty. I asked her if she'd take a check and she laughed for a second and then started crying again. That's when I snapped this photo.

I didn't offer her my credit card. I'm holding off on that for as long as I can.

So pray that her appetite would increase.

Goodbye, Mic-key

I can hear the charming and beautiful Susan downstairs singing "Celebration" by the Commodores alternating choruses with her impression of William Wallace in Braveheart shouting "Freedom!"

She's so cute.

Allie had her Mic-key button pulled today. She hasn't been using it, so technically, it's not a huge deal. But this is a huge symbolic step forward for us. It's a definite milestone. It's a declaration that Allie is moving forward. With every step, she demonstrates independence.

We're stoked.

Allie at Physical Therapy Today

Here're some shots I took today at therapy:



addendum: some people have let me know that they're having a problem viewing the popfly mashup i posted so try this link and let me know if it works: Ali Slides

OWeeeeeeeeeeeeeeeeeeee!

They stuck Allie like she was a pin cushion the other day. She got a ton of shots. I felt a little ambushed. I thought she was going in just to have a check-up, but they were waiting there for us with a handful of sharp things to plunge into Allie's little legs. Poor baby.

Poor me. As soon as the needles come out, the charming a beautiful Susan pulls a disappearing act like she was one of David Copperfield's vanishing beauties.

So Allie is a little sore this weekend. She git two shots in each leg in addition to that dreaded poke in the big toe to draw a few drops of blood. Susan got her undressed for a bath yesterday to find cartoon covered band-aids stuck all over the place like Allie was starting some kind of collection.

Poor baby.

Poor me. Did I tell you I was the one that had to be in there comforting her while she got all those shots?

On the serious side, there is a little concern that Allie isn't on track with her weight. She's grown an inch and a half over the past month, but she still only weighs eighteen and three-quarter pounds. She's actually lost a few ounces. She's been teething and that has affected her appetite. But they have a little chart down at the doctor's office, and Allie's little marks on the graph fall a little below the curve for her age and height so the nurses have been giving us little speeches. So we're thinking of creative ways to fatten her up.

I wish I had this problem. I'm looking for creative ways to take the fat off.

Allie has been doing fantastic at physical therapy. I'll try to get some pictures up of her later this week...

Road Trippin'

We just got back from San Francisco. Ali had an appointment with her neurologist, the infamous Dr. S., at California Pacific Medical Center. I love Dr. S. But Dr. S. has always been the most negative about Ali's prognosis of everyone on Ali's medical team. He's always told straight out that Ali would not progress very far.

I guess some doctors take that position so that parents will not have false hope. That way, if the patient exceeds the expectations set, they are happy no matter what. And the doctor comes out smelling like a rose.

This was Dr. S's tactic. And he usually smelled as good as a rose, but not exactly like one. Dr. S is quite dapper. But Dr. S said that Ali would always be on medicine called keppra to prevent seizures. He was also the doctor that said that Ali would be blind and an epileptic. He said that Ali may never breathe without a machine. A rarely smiled when working with Ali. And when we had planning meeting to discuss Ali's rehabilitation here in Eureka, he usually said his piece and then left the room. After he was gone, the rest of the doctors and nurses would do damage control to try and give us some hope and to lift our spirits. That's the effect Dr. S. had on us.

But on this visit, Dr. S. smiled. He was a little giddy, in fact, when he examined Ali. Ali was responsive and smiling and laughing during the examination. This floored Dr. S. He shined his little flashlight in Alis' eye, end she looked at him and followed his movements with her eyes.

"Did you see that?" asked Dr. S. "She looked at me. Her eyes followed me."

"She does that," said the charming and beautiful Susan.

It was our best visit ever with Dr. S. He was even talking about taking Ali off keppra. Ali was supposed to be on keppra the rest of her life. Now she could be off it some time this winter, spring at the latest.

"I'm impressed," he said. "Whatever you're doing, keep doing it."

We love Dr. S.

Ali Report

I wanted to share some highlights with you all from the report Deb the Magician has prepared for Ali's most recent evaluation.

Therapy Update

Ali is now seen in the office two times a week. She tolerates her car rides now. Ali has made great gains over the last three months. Initially she was very irritable; however, this has decreased significantly to a normal level with her now being able to participate in therapy for up to an hour at a time. She may fuss or screech at times to indicate pleasure, displeasure, or indicate she wants a change of activity, but she rarely cries now during therapy sessions. Her irritability decreased dramatically once she started to eat orally and her g-tube feedings stopped completely.

Feeding/Swallowing

She regulates her breathing with her swallowing. Ali has completely transitioned of her g-tube to oral eating with all medicine and nutrition taken orally. She just started to eat 1/4 cup of ground/pureed table foods 3 times a day with additional calories added to boost her caloric intake.

She has had one illness since eating exclusively by mouth, which required her to coordinate mouth breathing and sucking. She continued to drink her bottle during this time coordinating sucking-swallowing and mouth breathing. She is a dependent eater, as she does not effectively move her hands and arms to feed herself. She will try to help hold the bottle with one hand when she is relaxed. She can mouth pureed foods off her right hand.

Oral Motor Skills

She can now randomly move her tongue in various directions including in, out, elevate, rotate, and side to side. She an flatten, bunch and point her tongue randomly as well. Muscle overflow of sticking her tongue out in hard extension or tongue thrust is rarely seen now. She uses her tongue to lick objects that approach her mouth, which may be residual suckle reflex, it is hard to tell this point, as she appears to be enjoying mouthing the items. She is also able to make many vowel and early consonant sounds with this new tongue movement and control. She appears to enjoy making these sounds and enjoys people's responses when she makes sounds.

Motor Support for eating/speech and language

She is developing head control in sitting, but sits with a rounded lower back which does not support her upper trunk, shoulder, neck, jaw and tongue control for refined eating skills. This will need to be addressed in therapy. She does sit supported in a high chair now, but with rounded back, not on her sitz bone with a low back arch which is needed for optimal oral motor control for eating and speech. She has a difficult time coordinating hand-eye-mouth movement due to motor involvement.

Communication Skills

Ali was developing normally prior to her injuries. Her cognitive and communication skills have improved considerably over the last three months. It is highly likely that she is able to understand more than she can indicate at this time due to her poor motor control. She has scattered receptive speech and language skills through the 9-month skill level. Currently, she is able to turn take with vocalizations, she calms and anticipates events, she stops crying when someone talks to her, she searches for known voices, she searches for "mama" and "papa" when her name is mentioned, she stops or quiets in response to "no", she smiles at a familiar person, and she attends to music and singing. Her expressive speech language skills are severely delayed due to motoric impairment and are at the 5-6 month level.

Animal Train

The charming and beautiful Susan has a charming and beautiful mother that has been a huge support to us during everything that's happened with Ali. She started sending us the components to this presumably lead free Animal Train by Fisher Price toys.

A discussion like this has been going on between them:

Charming and beautiful Susan: did you know how big this thing is?
Charming and beautiful Mother: no.
CABS: It's as bid as Ali.
CABM: No way.
CABS: Way.
CABM: Really?
CABS: Really.
CABM: Can you have Bryon take a picture?
CABS: He'll do anything I tell him.

Hair Twirl

Ali does this new thing where she sucks on her right hand and twirls her hair with her left hand. Deb the Magician has been working diligently to get Ali's shoulder and neck muscles loose so Ali can start to experience all that's she's determined to do.

Before Ali got hurt, she used to twirl her hair into such a tangle that she'd screech and cry and make us come running into her room in a panic. What a character. That's why I call her "Funky Winkerbean." I thought I made that up, but apparently, it's a comic strip.

Ali also does some exploring with her mouth and tongue. She checking out one her favorite toys with her mouth. She's having a blast in this picture. Shrieking loudly and kicking her little feet so that she turns in half-circles.

One of our adoption protocols was an HIV test. But that's confidential, of course. We took Ali in last week to a local clinic to have this done, but the poor ladies working that lab were so intimidated by Ali and her condition that I didn't think they could pull it off. They broke into a cold sweat when they went looking for a vein to poke their needle in. I called it off telling them I'd figure something else out. They were relieved.

My sister, Jennifer, works in the emergency room at a hospital in a town about twenty miles from here. She greased the wheels at that hospital and arranged for Ali to go to their lab and have blood drawn by a couple of pediatric nurses who knew what they were doing and took charge of the situation. We were in and out of there lickety-split. Kudos to Jennifer and the staff at Redwood Memorial. Redwood Memorial is part of the St. Joseph health system. Read their story here. All of Ali's health care and recovery is being organized and managed through the St. Joseph network.

You'll notice Ali is covered with a blanket here. The mornings are getting chili. I know that if you're on the East Coast, you have no idea that it's autumn. But fall has fallen here in Northern California. As I type this, were having our first big rain storm of our rainy season. The charming and beautiful Susan keeps talking about picking up some flannel sheets. I hope that happens soon...

This is one incredible baby.

Out

Today the charming and beautiful Susan and Princess Ali and I went down to Rio Dell to hang out with my buddy Steve. Steve is a guy I've known since middle school. It was a test day for little Ali. Steve lives about twenty-five miles south of Eureka and Ali hasn't ridden that far in a car since July when we traveled back and forth from San Francisco which was a nightmare. Ali hated the July trip, but tolerated our trip this afternoon. And she lasted about four hours before she made it clear that it was time to go home.

By the way, this was the charming and beautiful Susan's biggest road trip since July, too. Since you asked, she traveled well, too.

We have to take Ali about fifteen miles south of here on Monday so she can have some blood drawn. Pray for both the trip down to the hospital and the appointment. This could be a traumatic event.

It's been getting cold here in Northern California. This morning it was 40 degrees and yesterday it was 37. It gets as high as sixty degrees in the afternoon, but after living in Florida for the past decade, my blood's pretty thin.

Ali finds the chilliness exhilarating. When the breeze hits her face, she squeals and smiles big.

Bumbo Seat

This is a picture of Ali sitting in her Bumbo Seat. Some very good friends sent this to us a few months ago, but it's taken Ali a while to develop enough head and trunk strength to sit in it. I put her in it when her and I are up early in the morning together. You'll notice that I've tucked her left arm between her body and seat. She is still learning to put body weight on her arms for balance.

You're So Cute I Can Eat You Up, Ali

Sometimes Ali eats a bunch, sometimes she's picky. I can learn from this. I just eat a bunch. I'm not picky. You put it in front of me and I'll eat it. If your hands get too close to my mouth, you'll pull back a stump.


You'll notice that the charming and beautiful Susan is keeping some distance between herself and the person (Ali in this case) being fed. She learned the hard way. This is due to losing silverware and other serving utensils while feeding me. We thank the Lord that she learned this "distance feeding technique" early in our marriage. Maintaining this buffer zone has saved the charming and beautiful Susan life and limb.


We're actively teaching Ali the difference between "finger food" and "fingers as food."


Ali likes a little food with her fingers and vise verse. Whatever it takes to make her smile. We live for the smile.


But the tears are cute, too.