Home Program for Visual Activities

Ali's therapist met us today with another hand out in hand. Rena is queen of handouts and homework. Rena is an occupational therapist that focuses on movement and motor skills. It's evident that Ali is working through Cortical Visual Impairment. That has been the case ever since Ali emerged from a coma in May. But she has gradually improved ever since. In fact, her improvement from week to week is measurable. Monday, Rena said that that was the best day yet. But then she said the same thing again today. But it was the truth. Ali is more cooperative and teachable with each visit to the therapist.

Here are the exercises Rena gave us as homework:

1. Use face to face interaction and facial expression (smile, open and close mouth, raise eyebrows)
2. Provide support for trunk and head when working on visual activities
3. Use real objects that are familiar, desirable and use them one at a time (cup, bottle, spoon, bowl, etc.)
4. Hold toys/objects 8-10" in front of a child's face/in periphery/slowly move in different directions.
5. Use brightly colored/shiny toys (lime green, bright red/orange, etc.) against a black, non-patterned background for high contrast
6. Use voice to help the child find your face and sounds to help them find toys and objects (musical toys, bang toys together, etc.)
7. Offer toys in bright lighted area
8. Offer toys to child's hand while identifying it and consistently use the same name every time ("ball"..., "bear"..., etc.)
9. Decrease noises when working on seeing
10. Help your child identify sounds with simple words, "That's the vacuum," or "Do you hear the phone?

Where We Want To Go

I've been given the opportunity on several occasions during the past few days to think about the things Ali can and can't do as a little one year old girl. Yesterday at physical therapy, Ali's therapist handed me this very informative article about Cortical Visual Impairment, also known as Cortical Blindness. Several times a week, I discuss how well Ali has progressed and how thankful I am that I have a group of people that pray for Ali and me and the charming and beautiful Susan. I hold to the firm conviction that the credit for her progress is the Lord's as He has intervened in this tragic event by providing and equipping medical people with skills and compassion along with everything else we've received to help us care for this precious little one.

Life is and will continue to be very different than we thought it would be. But I guess we all can say that about our lives. We never expected that we would have the chance to care for and watch a little girl grow up in our home. We never thought that we'd be making that home in California. We never thought that we'd be helping our granddaughter grow through and recover from the effects of Shaken Baby Syndrome.

While Ali was still in a coma in the Pediatric Intensive Care Unit, I ran a slideshow for the nurses so they could see the Ali I remembered and help us get back there. Below, you'll see slides of Ali crawling, holding her bottle, sitting up in a high chair, trying to stand, rolling over, holding spoons, grabbing bowls away from the charming and beautiful Susan, hugging a teddy bear, and putting her fingers in her mouth all by herself. These are all the things we hope that Ali will one day do again as she continues to progress.

Pie Hole

I wonder at what point in a little lady's life talking so freely about her bodily functions will make her blush.

"Did she poop today?"

"Yes, she did," is usually (hopefully) the answer. "Twice. And her little poops are more solid - not as runny as it used to be."

Could you imagine me having this conversation about my wife? Or my twenty year old daughter? Poop conversation never stops with boys, but at what point in a little girl's life do you quit this kind of talk?

Since you're probably wondering, Ali has produced two very nice turds today.

Ali has been familiar with the bottom end of the digestion process for quite some time. Now she is learning about the front end of the process: eating through the mouth. For the past several days, Ali has been getting all nourishment and medicines through the mouth. We haven't used the Mic-key button for two days. All of Ali's meds are sweet. One is grape flavored. She's not too crazy about it. We mix it with a little formula to try to trick her into taking it, but she's wise to that ploy. So we just shoot it into her little cheek a few drops at a time with a syringe (relax... there's no needle on it).

The charming an beautiful Susan tried something new with Ali today. She dabbed a little sweet potato baby food on Ali's pacifier and fed it to Ali. Ali loved it. She couldn't get enough of it. A little dab didn't do her. Then introduced a spoon. Ali got this look on her face like "what the heck did you just put in my mouth?" But once she discovered that this was a brilliant new mechanism for delivering increased quantities of sweet potato, she was very into it.

Deb the Magician, Ali's speech therapist, didn't exactly give us the green light for spoon feeding, but she never said we couldn't.

I won't say anything if you won't.

From Susan

The charming and beautiful Susan is the inspiration behind this post. Tonight, she made Ali giggle-yes! GIGGLE!!!- and she wanted to let you all know. Ali has been doing great. Yesterday was her best day in physical therapy yet. I think I may have already told you that she had her best day yet last time, but this time topped that time and we're looking forward to the next time. We went to physical therapy, we went to Target, we hung out in Starbuck's again, we chatted in Starbuck's with the worship leader's wife from Calvary Chapel Eureka, we put Ali back in the car, and went home. Later, we put Ali back in the car to go to see Dr. Jeff with the hip hyphenated last name, and than back home. We put Ali in her car seat a total of five times and she may have squawked for maybe a nano second the whole day. And then she went to bed and slept from about 8:30pm until 6:00am this morning. That's unheard of. Ali was unheard from.

And tonight, the giggling. We're giddy. The charming and beautiful Susan is on the verge of tears.

The charming and beautiful Susan said that every time we put out a request for specific prayer, we see this kind of phenomenal progress. So we want to put out to you all the things Ali needs prayer for in her rehabilitation.

1. Head movements/strength...Ali has recovered quite a bit of head mobility, but she has a long way to go and progressing further depends more on strength in her muscles rather than making the neural connection. She turns her head in response to sounds and voices, but her movements are not very deliberate.
   
2. Focusing her vision... Ali looks into our faces as we're holding her or feeding her or kissing her little lips. But she doesn't track with objects as they move across her field of vision. Within the last week, she has, for the first time, shown the potential for developing this ability in spite of her neurologist's grim predictions. By the way, Ali's neurologist saw her during our trip to San Francisco and was very impressed with Ali's progress. He gives us the credit, it's you all knock, knock, knocking on Heaven's door for us.
   
3. Arm movements/strength... Now that the g-tube has been pulled, more of Ali's rehab will revolve around working with her on her stomach. But she hasn't developed full range of motion with her arms. And she also needs to develop the instinct put her arms out protectively in case she tips over or falls.
   
4. Crawling... Crawling seems familiar to her and she is very motivated to do it, but, again, she lacks the strength. And she lacks the coordination. So these are the areas she needs to develop this. And, of course, after you crawl, walking follows.
   
5. Pull the plug... Today Ali drank over eighteen ounces of formula. And we loaded a pacifier with her meds so that she can take those orally as well. So, we want to see this become a way of life so we can close up artificial access to her digestive system. I can't even begin to tell you how much Ali has calmed since she started bottle feeding. This is the way she needs to be to learn.
   

These are the things the charming and beautiful Susan would like you to know.

Latest Trip to San Francisco

We thought our trip to San Francisco was going to be harrowing. Getting our little princess to cooperate and ride peacefully in the car seat is a tall order. As Ali has become more alert, she has learned to use the ancient child-parent communication tool known as the temper tantrum. She threw two on the way to San Francisco and two on the back north to Eureka. The first one on the way home lasted from Van Ness Blvd. in downtown San Francisco, across the Golden Gate Bridge, through Marin County all the way up into Santa Rosa. That's quite a bit of beautiful Northern California countryside for a loving married couple to experience with a baby shrieking in their ears.

But the worst baby crying I've ever seen is when Ali had her g-tube (see below) snatched out by the Doc.That was quite an undertaking. Ali started crying as soon as the Doc started probing around the g-tube point of insertion in her belly. The charming and beautiful Susan performed a disappearing act at that point. She's not a big fan of baby pain or the sight of baby blood.

In that little doctor's office room were Ali on the the table, the Doc, Nurse Vance, and me being completely useless and in the way. But they say I had to stay (something was muttered about a parental present and hospital liability). Nurse Vance held held Ali's legs, I held her hands and talked soothingly to her. With all those hands holding and probing and me with the gentle voice, Ali got wise to the fact that something really painful was about to happen so she freaked. The Doc cut the tube spraying the contents of Ali's stomach all over the room, wrapped part of the tube around his fingers and clenched his hand into a fist, waited for the hyper-ventilating and screaming Ali to take a breath, and yanked. I'm pretty sure Ali's face turned purple at that point. I don't do well with the sight of baby blood either, but what are ya' gonna do?

The Doc and Nurse Vance were a blur as they worked to insert Ali's new feeding valve, the Mic-key. They were done in about thirty seconds and Ali was in my arms in forty. We went down to radiology from there to make sure the Mic-key was installed in her stomach properly. That's when the charming and beautiful Susan, like a magician's assistance, re-appeared and gave Ali the hugs and comfort she was looking for.

The x-rays showed that everything was working properly and we were on to our next appointment.

That Mic-key tube has changed the way we handle Ali. For two months, Ali has had a catheter hanging out of her abdomen. Now she has this flat little button. It's so cool. It doesn't get in the way and Ali is not nearly as agitated by this thing as she was by the g-tube. She can be placed on her belly, she can wear different clothes, we can put her in one of those baby carrying pouches, and, best of all, she can be placed on her belly to work on crawling in physical therapy.

Now that Ali is drinking a bottle, she will only be fed directly to her g.i. tract at night, when we give her medicine, and in case of an emergency.

It's nice to see things start to get normal and un-harrowing with her.

Chillin' like Bob Dillon

At the time of this posting, Ali has been laying BY HERSELF (woo-hoo!!!) in the porta-crib by herself for at least half an hour. This just hasn't been done yet around here. Susan and I are both getting OTHER things done right now. I've been working on my computer, answering emails, doing my credit card statement and the charming and beautiful Susan has been doing a little online shopping.

Bottle feeding this kid has made all the difference in the world. Not only is she physically satisfied, but she also has a ton of emotional needs met, too. This is when "eating for comfort" is a good thing...

One oh-zee

Deb the magician gave us some homework to do with Ali. Deb the magician is Ali's speech therapist. Her mission in life right now is to get Ali off the feeding machine. Our homework is to continue to provide Ali with stimulation to re-train her to eat. This morning, I did the routine that includes dipping a pacifier in formula and giving to Ali, then give her a few swallows of formula from a bottle and chase it down with some pacifier.

Repeat.

Ali and I did this to the tune of one ounce of formula from a bottle. Yeeeee-HAW!

That's great considering a normal feeding from the machine gives Ali about three ounces of formula in an hour. Ali does this all quite naturally.

Good job, Girlie.

More Progress

Our little Ali had a very productive day. Today's highlight was the visit from Ali's speech therapist Deb. Deb is like... magic.


Notice that little gizmo strapped to Ali's neck. What Deb the magician is doing with that apparatus is listening to Ali swallow. That thing is plugged into a little speaker pack so we ca all hear what's happening in Ali's little throat. Bet your iPhone can't do that.


So Ali did great! She did well enough that Deb the magician was confident that Ali could take several sips from a bottle with a regular nipple.


Ali LOVED drinking from that bottle. I wonder if it seems familiar to her.


We started out the day this morning playing with some of Ali's new toys. This ball makes sounds, flashes, sings, and rolls around in funky patterns. Ali laughs at it. I help her slap it to keep flashing, rolling, and singing.





I can think of no sounds on earth more heavenly than Ali laughing.

Four Weeks in Eureka and Respite

We've been in Eureka four weeks, today. We are definitely settling into a routine. Ali goes to physical therapy on Mondays and Thursdays. Several times a week, a speech therapist comes to the house and works with Ali. Ali is taking a pacifier dipped in food or ice water and is swallowing well. Twice a week, our main nurse comes and weighs Ali, gets her temperature, and spends time evaluating Ali's time between her visits and helps us to provide the best care possible.

Recently, we've started to have respite care visits from nurses. Three nurses will spend forty hours a month here at the house to help us and to provide relief for us or time to just get out of the house. Once we get the respite care nurses up and running with Ali's routine, the idea is to sneak away for a couple of hours or so. Today Susan and I got out of the house for about two hours leaving Ali in the care of Millie the Wonder Nurse. We went to Starbuck's, drove around Eureka, and then rode out to the beach. We had some serious respite goin' on.

Ali's biggest challenge--our biggest challenge--is napping and getting her to bed. She's tired, but she fights it until she works herself into a full-blown, red-in-the-face-snot-flingin' tantrum. So naps during the day are rare and short, and getting her to sleep at night is an intense hour to two hour event. Some day I'll be able to do seminars on putting baby night-night. All three of us (Ali, the charming and beautiful Susan, and me) are quite frazzled and exhausted by the time she goes down. The up-side of this is that Ali sleeps most of the night through. She wakes when she loses her pacifier (she can't move and put it back in her mouth herself), but once the Binky is popped back in, she goes right back to sleep picking up her dreams right where she left off.

I will say that Millie the Wonder Nurse is able to get Ali to relax. While the charming and beautiful Susan and I were out on our respite, she got Ali down for forty-five minutes.

On the custody front: Ali's case in California Child Protective Services has been kicked upstairs to the department that handles adoptions. That's a good thing, but does present us with a challenge or two: as non-residents of the state of California taking the baby across state lines, this process can take over a year--maybe two. If we're residents, then the case will be expedited but will still take a minimum of six months. We get our first visit from our new case worker at the end of the month.

So, if you're praying for us, could you please pray:

1. for Ali's physical therapy and speech therapy
2. that she'll surrender to sleep earlier
3. that Susan I will get the down time we need
4. for the adoption process
5. for wisdom
6. for peace
7. for joy

Quiet Time

This is a first. Ali is laying in her crib by herself and just laughing. For the past half hour, Ali's been just laying there staring up at the mobile a friend sent (thanks, Cheryl).

Ali had a great morning at physical therapy. Gerrie, one of Ali's nurses is here with us today. She's a great sister in the Lord and we appreciate the loving tenderness she shows our little Ali.

A Huge Thank You

Ali had a great first birthday. So many of you guys sent gifts. Thanks Thom & Jody, Ray & Nancy, Kathy & Clay (and pups), Miss Marie, Loraine & Family, Grandpa Jim, Mallory, Aunt Mary & Aunt Barbara & Uncle George, Cheryl & Dan, Grandma Yolanda, Aunt Camille & Aunt Blanche, Tracy, Kristin, Great Grandma Susan, Great Grandma & Grandpa Valerio, Aunt Mary & Uncle Larry, Art & Catherine, David & Lyette, Anne & Art, and Bob & Candy.

Too numerous to mention by name are all the people who've sent encouraging emails and left comments on this blog and who have loved, supported and prayed for us. Thanks go out to you all, as well.

Ali piled up new clothes and educational toys so she can play her way through rehabilitation in style.

Pictured below are the charming and beautiful Susan, Grandma Yolanda, and Charity opening and organizing gifts.

Mommy and Daughter

This morning started out kind of rough for little Miss Ali. We had a nine o'clock appointment at physical therapy. I pinched Ali's chubby little leg in the car seat's buckle. I hate when I do that. So does Ali. She let me know about it. I think she cussed.

Ali punished me for the car seat episode by not cooperating during physical therapy. But they did some work with her on her belly and Ali did great. She was trying to crawl! She just doesn't have all the strength and coordination she needs to pull it off, yet.

Afterward, when we put her back in the car seat, I had both grandmas (Grandma Yolanda in here visiting) watching me like a hawk to make sure I didn't injure their poor little baby.

We drove through Sequoia Park and saw a deer. Then Ali started to throw a fit while strapped in her car seat, which is stressful. I can't get home fast enough when that happens. When we did get home, she went right down for a nap in her crib. She's doing better and better by herself both on the floor and in her crib.

After a short nap, Deb the speech therapist came over. She worked with Ali's back and neck muscles, hands, and fingers. She also dipped Ali's pacifier in ice water to increase the sensation Ali gets when she has it in her mouth.

Charity continued the cold pacifier technique after Deb the nurse went to take care of her next patient.

Ali and Charity had a great chance to enjoy each other's company.