Wednesday, October 31, 2007

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.

Monday, October 29, 2007

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

Sunday, October 28, 2007


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...

Tuesday, October 23, 2007

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.

Thursday, October 18, 2007

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.

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.

Sunday, October 14, 2007

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.

Tuesday, October 09, 2007

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.

Saturday, October 06, 2007


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.

Thursday, October 04, 2007

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.

Wednesday, October 03, 2007

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.