Tuesday, September 28, 2010

The Reason Why

Some may wonder why I do not update on Aviana very much. The lack of updates is because this process follows a familiar pattern.....

Work your tail off.

Wake, and do the same exact thing over and over again.

Receive very, very small rewards.

This has been a difficult lesson for me to learn. In so many cases, when you work your butt off, you reap great benefits.

For most of the month, I feel good, upbeat, optimistic, hopeful, happy and such, but for a very small window....I feel like nothing is enough, or will ever be enough!!

So, what has Aviana accomplished lately?

Her eating by mouth has been somewhat sporadic. Sometimes she does extremely well, but other times she doesn't at all.   I feed her 1 full meal and 2 snacks per day, by mouth.

Her awareness has improved greatly.  She seems to be constantly paying attention to everything around her. She is more interested in her friends, and all of her surroundings.

When we pick her up, she puts her arms around us.

She is starting to pay more attention to Kama again.

She would not pattern one day, so Dave told her, "ok, if you don't feel like patterning, you have to crawl on the floor." He put her down, and to our great amazement, she was moving in semi-circles and then back again. She then moved backwards for about 5 feet.  She was more bound and determined than I had ever seen before.

This went on forever, as she did not want to stop. We finally picked her up, because we feared she was getting so tired, she might drop her beautiful face hard onto the floor.

She is crawling down the full 9 feet of inclined floor, and is doing far better than she ever has.

The other day she was on the couch, and I went and got her stuffed elephant.  I was holding it up to her, and asking her if she wanted it, to my surprise, she slowly opened her right arm so I could put it against her.

In the past two weeks, she has decided to exercise her powers as a pint sized four year old. She has more attitude than ever. It is so nice to see, but is sometimes very difficult for therapy.  She even pouted a few times when having to do something she didn't want.

Her attitude toward me almost caused me to drop kick her out the window yesterday.  That feeling hasn't appeared since prior to the accident.

She is also making more and more sounds. When we ask her a question, sometimes she will make a noise like she is responding. We can tell she wants to talk, but just can't.

She is extremely healthy, and her weight continues to decrease. Can you believe she was all the way up to 43 pounds at one point?? She is now down to 34.4. We are still on our way to her fighting weight of 32.2.

She has a choice board that we use at least 10 times a day. We have YES and NO divided on a piece of paper and ask her questions. We hold her hand up, and she guides it down to her answer. I used to be a skeptic on this, but after the Institute pushed me to continue, I now see how much it really works. She loves making her choices be known.

I asked her if she wanted to try her costume on, and she said YES. I put it on her, and went in the back to the full length mirror. I stood her up, but her head was down. I said, "Aviana, if you want to see your costume, you have to lift your head." It was hard work, but she did it!

Aviana was sitting on my lap with her head down and facing away from the hallway.  Dave came home from work and when she heard his voice, she lifted her head and turned it around toward him.

We do an exercise called patterning, which requires three people, plus Aviana.  Now, if one of us happen to make a mistake, Avi will call us out on it. In a BIG way. She screams and cries out. She is clearly very angry.

Michelle says she pushes the buttons on one of her toys to make it go.

Our new nurse, Lesya, left her with her toy necklace around her, and when she came back, Aviana had somehow taken it off.

There you have it, Aviana in a nutshell.

Monday, September 27, 2010

Our Girls

Busy Bee

Aviana has been so busy lately. First my dad's dog Snoozer came to stay with us for a week.  Then, Aviana had her best friend Lily over, and last, her cousin Gaby spent the night.  She has really been enjoying herself lately.

All three of them would take a "snooze fest" together.

Kama played with Snoozer all week long. She acted like she was a puppy again.

Michelle took Avi for a walk, and picked up a flower along the way.

Lily was showing Aviana one of her favorite apps.  Aviana was really paying attention to it.

Avi was captivated by Talking Tom.

Aviana, still checking it out.

All 5 of us were in bed watching a movie :o) I love Kama's face in this picture.

Gaby and Aviana enjoying their slumber party.

Gaby is so sweet. She loves her little cousin so very much.

Avi was the second to fall asleep....Dave was the first!! I suppose every party has a pooper!

 The next day the girls were so exhausted from staying up late, they took a little mid-day nap.

Friday, September 24, 2010


Before, if I saw a cute outfit for Aviana, I used to buy a few. One to wear this year, and one for the next.  If it were really cute, I would stockpile!

Just prior to coming home from the hospital, Aviana had ballooned up in weight. None of her old clothes fit her. Her weight continued to increase. I went through my stash of this years, next years, and the years beyond in clothes. Nothing fit.  I ended up buying her all new clothes.

For me, one of the saddest days was packing up all of her old clothes. The above statement was put much too lightly and delicately.  I felt sick to my stomach, and through tears, I stuffed all of it into a space bag. This task was accomplished as fast as humanly possible. Even at lightning speeds, I could not stop the slideshow of memories. With each passing outfit, there were vivid mental pictures.

As I bundled the brand new items for future years, complete with tags and such....I felt like a stupid, idiot. A fool. Why would I have purchased these? What was I thinking! Each day is not a guarantee. At that moment, I vowed to never purchase another item for the future. 

Fast forward to yesterday, I found the cutest little Halloween shirt for Avi. Without a thought, I grabbed the next size up. For next year, of course.

It wasn't until I folded it, and walked to the familiar future drawer that I remembered my vow. The pain of the last withdrawn contents was just about as fresh as the last time I had opened it.

I thought to myself, of course Avi will be here next year. She is strong. She is healthy. She is vibrant.  My mind quickly remembered, she was all of these things before too.

I wasn't sure what to do, so I just laid her new shirt on the dresser, to be dealt with at a later time.


Thank you so much for taking the time to give me suggestions for Aviana's costume this year!

I received her costume in the mail a couple of days ago, and am so excited for Halloween this year.  I am thinking it will definitely be a tear free holiday!

Saturday, September 18, 2010

Would you rather?

Aviana was in the hospital for a total of three months. She fought for her life in Trauma 1 for one month, and then was moved to the Kaiser PICU. She then was moved back to the UCD PICU for just about one month.

In that time, I saw some of the most horrific things I had ever seen.  My heart went out to the various families of these particular children.

For some strange reason, which at the time I did not understand, I would play a morbid game called "Would You Rather?"  I would drive Dave nuts with this game.  It went something like this....

Would you rather have a brain injured child or a child with cancer?

Would you rather have a brain injured child or a child that was burned?

Would you rather have a brain injured child or a child with no arms?

Would you rather have a brain injured child or a child with no arms and legs?

Would you rather have a brain injured child or a child that had passed away?

Would you rather have a brain injured child or a child with progeria?

Dave appeased me for a little while, and then stopped me in my tracks with this....

I would rather have a perfectly healthy child, than a brain injured child.

I quickly started to keep this sick game to myself.

At first, I noticed I would rig the game in my own mind to always have the brain-injured child "win." I then realized that I would question every single scenario, and wonder what I would prefer. This kept me busy for quite sometime. Sadly, I began to recognize that Aviana, in my mind,  was losing in so many scenarios. I think this is why the game went on the decline.

I try not to play this game anymore, but it sure has a way of sneaking in and taking over sometimes.

I felt like a weird sicko, and so I did eventually bring it up to my counselor.

She said, "It's not sick, you are just trying to make some sort of sense out of this horrific, tragic event."

I suppose I will never be finished making sense of this, and I will just have to sort of go with the crazy, mixed up things my mind sometimes does.

The bottom line is, I too so desperately.....

Would rather have a perfectly healthy child, than a brain injured child.

What to Do?

Halloween is by far, my favorite holiday.  I love dressing Avi up, but am having the hardest time finding the perfect costume for her this year!

I went to all of the stores and looked around. I went to some online sites. I even started to look on Etsy. I am seriously stuck.

Here lies the problem, I wanted her to be a butterfly, but wings don't exactly work with a child that cannot stand. It seems everything I like, or want, has wings and things :o(

I found a few others, but the truth of the matter is, they won't look right because a child of her age is usually able to stand :o(

I want her to be something cute or spooky, but not something she has been before.

I could use any suggestions or help possible :o)

A trip down Halloween road...

She was a cute little ladybug.

Then, a scary witch. Actually, she didn't get the scary part down, she was just plain adorable.

You may remember last year, she was a cracked out, pimped out, kitty cat. I was in tears last Halloween. I thought she looked cute, but I couldn't stand her costume!  This year, I don't want to revisit the past, I desperately want her costume to be perfect!

Wednesday, September 15, 2010

How must she feel?

The girl who coined the term "Avi Do It," and lived it to the letter.

The girl who was fiercely independent and could do everything.

The girl who made it a point to take full care of herself.

The girl who could zip zippers,

and put on all clothes.

The girl who could put her own diaper on,

while in diapers.

The evolved girl, who could fully go to the bathroom herself,

including washing her hands.

The girl who would wrestle any pair of shoes into submission,

upon her tiny, little feet.

The girl who could button buttons,

like the best of them.

The girl who would sit and analyze,

every single obstacle, until she overcame it.

The girl who would grab her bib out of the drawer and put it on herself,

and then climb up into her tiny chair at the table.

The girl who wasn't afraid of anything,

and grabbed life by the horns.

How must this little girl feel?

The one who is completely dependent.

The one who cannot take care of herself.

The one who cannot zip zippers,

put on a diaper,

go to the bathroom,

wash her hands,

The one who has her clothes,

and shoes,

picked out,

and put on for her.

The one who cannot button buttons,

get ready to eat,

feed herself,

or eat much food by mouth for that matter.

How must she feel?

To go from complete independence,

to total dependence!

The thought is...



Sunday, September 12, 2010

It Takes Two

It takes two to keep this boat afloat.

It takes two to agree with the direction of Aviana's care.

It takes two to be completely on board with how to move forward.

It takes two to divide and conquer the brain injury beast.

It takes two, for when one is falling behind, and the other is running ahead.

It takes two brains to somewhat master this program.

It takes two to be equally in love with this little girl.

It takes two to sacrifice most of ourselves for her recovery.

It takes two, as there is always one to cheer the other on.

It takes two to keep her showered in love.

It takes two to fully trust in her ability.

It takes two to completely believe in her recovery.

I'm sure it could be done with one, but I thank God for two!

I love you baby! 

Saturday, September 11, 2010

Wednesday, September 8, 2010

Happy Birthday B

Today is Dave's birthday!

One year ago today, we brought Aviana home from the hospital. She was the most perfect birthday present ever. I can't believe it has been one year!

We are both so happy and grateful to have her here with us.

The three of us are going out to dinner tonight to celebrate.

It is a perfect day today, other than the obvious....it is windy, overcast, and just plain beautiful!

I love you honey. I can't imagine going through this life with anyone, but you. You make even the darkest of days bright!

Thank you for being the best husband and daddy!!  We are three of the luckiest girls in the world =)

Thursday, September 2, 2010

Speed Test

I do it all the time.

My mind grabs the wheel.

My heart wrestles for control.

Against my heart's will,

my mind prevails.

The car that hit Gary and Aviana was traveling at about 31 miles per hour.

As I drive,

I constantly look down at my speedometer.

I continually question myself.

Is this how fast the car was going when they were hit?

No, 4 miles faster.

Was the car traveling this fast when Gary flew over the hood?

No, 3 miles slower.

Could this possibly be the speed at which my baby slammed her head on the concrete?

No, 6 miles faster.

Wednesday, September 1, 2010

Here I am

I have always known this saying,

But have never fully embodied it,

Until now.

Wherever you go,

There you are.