Wednesday, June 30, 2010


We are playing hooky!  Today is our 9th anniversary and instead of the same old thing, we have decided to scoop our baby girl up and run away to San Francisco!

I am so tempted to bring the mask....

but I won't....

that would just creep innocent bystanders out :o)

This is the beginning stage of "Operation Sanity."

Thursday, June 24, 2010

Target Practice

I forgot to add one very important detail to my previous post....

My mom thought it a great idea for us to get new couches. While quite a nice suggestion, I honestly prefer to keep the ones covered in throw up, spit, formula, medication and now a constant and endless supply of green leafy puree.

If you could get your hands on one of those backlights they use on 20/20 and wave it over our family room, the sight would be horrifying.

Don't worry, if you come over and I catch you standing on the outskirts of the room all night, I will completely understand.  I too, feel like I need to be hosed down after sitting on these sofas!

From the looks of it, Aviana is tired of being the target of this reoccurring incident!

This is just more incentive to get rid of that damn button!

Tuesday, June 22, 2010

Brain Injury Rocks!

For the life of me, I can't seem to think of anything I would rather do with my life!

I love spending all day, every day, 7 days a week, 365 days a year doing therapy.

I love the feeling of Aviana crying her eyes out as we do the things we HAVE to do for her.

The thing I love most of all, is when she is screaming her head off and we must keep going.  Sure has a way of making you feel like the BEST parent in the world.

I love being able to thoroughly enjoy the summer. Avi and I being held hostage in our doesn't get any better than that.

To watch your family slowly fall to pieces or stumble their way through each day, I don't know about you, but I call that The American Dream!

I am looking so forward to fall, winter, the holidays, spring and summer again and again. It's nice to know exactly what you will be doing for what seems like eternity.

I bet all of you love to see your husband work his A*S off and then come home and continue to pretty much work until he goes to sleep.

Watching a 3 year old come off of hard-core narcotics is nothing short of exhilarating. Watching her become terrified and tense due to the smallest or biggest of sounds makes my heart sing! To be able to experience it about 10 times a day is epic!

Doctors' appointments, dealing with the pharmacy and trips to the shrink. Family outings, who could ask for anything more! Not me!

It's so liberating to not be able to go anywhere on the weekends.

It's awesome, if you even let the thought of going to someone else's house cross your mind, you get to shuffle through the endless catalog of items to bring with you. It's so worth the effort, because your not really exhausted enough, right?

I love having my house turned up-side-down and inside out. It has the most amazing calming affect. I never knew how good it could feel to live in disarray.

Have I told you lately how great it feels to not go to the movies, not go to the zoo, not go swimming, not plan a vacation, not run out for ice cream, and all of the various other things I sure don't miss.

Nothing puts a smile on your face like dragging your hurt child through the gauntlet of the day's activities.

There is nothing quite like not being able to go up and spend the day with my dad.

Balancing the truly fine line of having help and maintaining some normalcy in your home, it's got to be everyone's favorite thing to do!

Friends' falling by the wayside...yet another perk of this wonderful life we lead.

Did I mention, listening to your little girl scream bloody murder as she lays on her stomach, now that's my kind of day.

My favorite thing, one that I have always been great putting people out! Constantly having to ask for help, it is my specialty. Being a taker and rarely a giver, that is what my life has always been about!

I forgot to tell you guys, we are to cook everyday, yes you heard me, everyday. Our highly efficient Sunday cook off has sadly come to an end.  I can't explain how good it feels to tear up the kitchen just about EVERY night AND get to clean it all up!  Wish us luck on ever cooking for ourselves again. That takes supersonic amounts of energy. I rarely have it.

I even got to cut our nurse down to fewer days, not because I still don't love her, but because I needed more time with Aviana. You know what that means though....yeah, more therapy for me! More scheduling of the revolving door, once known as my front door! Oh, what the hell, doesn't everyone have one? Privacy Shmivacy!

I can't help but feel lucky to not be able to go to a party, sit and watch my kid in the pool and drink a shot of tequila.

Ohhhh, I sure can't wait to go on vacation again. I am thinking.... Cabo..... actually how about Philadelphia! That sounds awesome, and instead of sight seeing, I think I want to spend 10-12 hour days at The Institute....for a week!

I can't help but feel like a million bucks as my attention is always divided. There's a certain, I don't know what, to not being able to give your family and friends your time and undivided attention.

You know, I can't sleep at night.  I am just too amped on waking up and doing it all again!

Don't be jealous....I know what you're thinking....

I sure wish I were her, that girls got it made!

Monday, June 21, 2010

That's what husbands are for...

My lovely husband got such a kick out of the fact that I put the wrong age in my "Sweet Sixteen" post.

Can you blame me, I was in another world, magically teleported back to 1991.  I had a drink in my hand, toes in the sand.....remember = )

By the way, I was only off by less than 6 months.

I am 35, not 34...

Saturday, June 19, 2010

From the bottom of my heart

We have just crossed over from the very worst year of our lives. It feels so strange to say that, but it's true!  I can't imagine much else being more difficult than what we just experienced!

Everyday, I am reminded of how much love we are surrounded in. I want to thank each and every person who so graciously wrapped us up when we needed it most.

I honestly feel like the luckiest person in the world. I truly have the best family, the best friends, the best neighbors, the best blog readers, the best of everything.  I am a lucky girl!

Please know, that not a day passes by, that I don't stop and think of what you have done for us!

Thank you for caring for us. Thank you for supporting us. Thank you for pushing us forward.  Mostly, thank you for keeping Aviana in your constant thoughts and prayers.

She is the most amazing gift, and we feel blessed that she is here with us.

With Love,

Friday, June 18, 2010

Sweet Sixteen

I want to be 16 again.

Such a strange thing to say, being that I am 34.

You know the way it normally goes....

When you're little, you want to grow up.

When you're 15, you can't wait to be 16.

When you're 16, you've just got to be 18.


When you're 18, twenty~one can't get there fast enough.


That's it!

So why 16?

I want to go back to Tahoe and live with my dad.

I want to feel the absolute thrill of turning up the music and finally driving away.  By myself!

I want to have minimal responsibility.

I want this to be the beginning of the summer of my 16th year.

I want to feel the excitement of working, going to the beach, watching the local bands, and meeting all the wandering tourists.

I want to lie on a pier at night, with my eyes turned up to the sky. I want to stare at a million beautiful stars!

I want to be encircled in giant trees and mountains.

I want to be responsible for myself, and myself only.

I want things to feel fresh and new.

I want to drive away, and not know where I am going to go.

I want to float around on a raft.

I want to be that girl, the one with an endless amount of hopes and dreams.

I want to be her, the one who would never have believed for one second, something so horrific could happen.

I want to drink all night and sleep all day.

I want to hang out on the top deck, BBQ, and overlook the most beautiful lake.

I want to be carefree.

I want to be surrounded in the cool, crisp, perfect Tahoe air.

I want to go camping.

I want to sit around a bon fire, with dirt on my face,  and laugh.

I want to go wakeboarding.

Right at this moment, I feel like I want to be anywhere.

Anywhere, but here.....

Thursday, June 17, 2010

A Year Ago Today

Last year, the unimaginable happened.

Today at 12:17 pm, I can officially begin a new chapter of my life.

Thoughts of the previous year were glaringly obvious with every holiday and more. There was always a certain level of sadness in the weeks leading up to each event. As you may have noticed, the following is what the last year looked and felt like:

Last year, on 4th of July we really enjoyed the day together. Avi wore the cutest little red, white and blue outfit. We went kayaking in Lake Tahoe and then enjoyed a nice BBQ.

Last year, Aviana had the perfect 2nd birthday party. She was so unbelievably happy that day and enjoyed being surrounded in family, friends and of course, cake!

Last year, Aviana shocked me by being potty trained right after her 2nd birthday!

Last year, Aviana was the cutest little witch in town. She had mastered the art of trick or treating and couldn't get enough. She would say trick treat in the cutest voice imaginable!

Last year, we celebrated Thanksgiving surrounded in family. She wore one of my favorite dresses.

Last year, Christmas in Tahoe was heaven, as always.

Last year, we took Aviana to the zoo.

Last year, on Valentine's Day, Aviana and I made the cutest Valentine's for her preschool class.

Last year, Aviana and Kama were partners in crime, investigating the backyard every chance they got!

Last year, Aviana was such a little goofball on St. Patrick's Day.

Last year, she looked so adorable, as she sat and watched cartoons.

Last year, Aviana found every egg in the yard and decided to throw them into the fountain!

Last year, this is how Aviana would wait for her Nana and Papa.

Last year, we spent Memorial Day weekend in Tahoe. She had the best time with her cousin Gaby.

Last year, Aviana had a great day with her friends at the annual Guatemalan picnic.

Last year, before Maia's birthday party, we finally stopped and took pictures at Aviana's sign.

Last year, we went to Maia's birthday party and were splashing around the pool.

What a difference a day makes. I have anxiously been waiting for the one-year mark to be up and over. I find it amazingly refreshing to think of the upcoming year with more hope and optimism.

At this moment, this new year is already off to a great start. The fact is.....

Last year, at this time, we were all gathered in the Emergency Room waiting to hear what was to be with Gary and Aviana.

This is a small example of how last year at this time looked.

I am so thankful for the natural progression of life. I am grateful that my memory with Aviana, as she is now, will far outlast the one of yesteryear!

After coming off of the worst year of my life, am I being naive to think that it can only improve from here on out?

Saturday, June 12, 2010


How am I supposed to sustain patience?

How am I supposed to maintain a positive attitude?

Today, there are brightly colored lightbulbs glaring in my face.

I try to look away,

but there they are again,

and again,

and again.

I can usually out run them,

but today,

they are having their way with me.

Thursday, June 10, 2010

Cliff Notes Version

Today is the first day that I woke up, blinked a few times and thought, "Hmmm....I think my bearings are finally somewhat in place!"

Let's see, how do I condense a full weeks worth of information into a short, informative blog note?? Bullet Points? Short Paragraphs? Some of both...yes!

Flight~ because Aviana is no longer sick; we had a perfect flight there and back. This was a complete night and day experience from last time!

Pennsylvania~ again, hands down, one of the most beautiful places on earth. If it weren't for all of my family and friends in California, coupled with the humidity in PA, I'd be there!!

Day 1~ they reviewed our current program and re-evaluated Aviana. They found that in regard to diet and weight loss, she did amazingly well! They were really happy with how far she had come in such a short period of time. They also realized she had not made too much progress within the physical program. They are thinking now that her diet is in good order, her physical program will follow.

Shocker~ they asked what the most difficult part of our program was and I said the inclined floors. Our advocate said, "Then we will get her moving! If you were doing 20 floors before, we will do 60 now!"

I just about had a heart attack in my chair. I asked for clarification many times. The answer remained the same.....60 floors. I know the staff has to listen to us whine a lot, so I try not to, but in this situation I had to say my piece, "Leia, are you serious?? Do you want us to go to bed at 4am and get up at 6??!" She was serious as the heart attack I felt coming on.

This little bit of information cast a haze over my entire week. It loomed like a big, black cloud.

Day 2 & 3~ we were in lectures for both days. They have so many different programs to help our children. It actually makes your head spin, if you let it. We learned so much, and realized just how many aces they have up their sleeves!

Day 4 & 5~ we first took Avi to an eye appointment. They found that while her eyes are very healthy and move perfectly together, she is using her left eye majority of the time to see. He said she is 1000 in the left eye and 2000 in the right eye. We also met with every imaginable person at The Institute to go over the new program. Some things stayed the same, some things changed.

Shock Relief~ as we were learning the new program, the big, fat, black cloud above began to generate thunder and lightning. The storm activity was sending shock waves through my entire being. Internally, my attitude began to short circuit. All I could think was, all this, and 60 floors!!!

In the 11th hour, we met with our advocate again. She said she got a little excited on Monday and after reviewing everything on Aviana, with everyone....they decided to reduce the floors from 60 to 15. Less than what we were doing previously!!!

Haven't I learned anything from myself? I have become so much better about unnecessary worry. They got me...I worried all week and cursed everyone out in my head....all for nothing!

Things that are the same~



Reading Program

Things that are different~

Instead of 2 types of patterning, we are now doing 4 different types.

Instead of 24 minutes of deep tactile massage, we are now doing 40 minutes.

This massage is to the bone, and helps her hips.

We do not have to do anymore gnostic (sandpaper, brushes, etc) WoooooHoooo

Luckily, we also don't have to sound the airhorn throughout the day!

They added respiratory patterning also. 2 hours a day. Pictures will follow, this is too hard to explain. 

Medullary Reflex- think "log rolling" Avi down a 6 foot board! She really enjoys this one! Pictures of this one to follow too :o)

Feeding~ They want us to ramp up on her feedings by mouth. Their goal is to get her tube OUT!

I fed her about 75% of her food by mouth on Monday, she was way exhausted on Tuesday. I went a little overboard! She was really enjoying it I just went with it. It ended up being too much though, so I need to gradually ramp her up :o)

Overall, it was a great trip. We are once again armed and dangerous!

Wednesday, June 9, 2010

Range of Emotions

When your mind runs in circles through a broad spectrum of emotions, it makes for an exhausting week!! While on the inside, it feels as though there is a huge magnifying glass suspended over The Institute grounds.

 Every little tiny detail is carefully analyzed and amplified. We well know the reality of our situation, as we live it day in and day out. While inside the walls of this Pennsylvania wonderland, everything is examined, the good, bad and the ugly.

Just a few experienced, on the laundry list of emotions....

Thankfulness~ for being blessed enough to know of The Institutes.

Disgust~ by the steps we will have to take to *hopefully* get this little girl walking again. I feel sick that just under one year ago, she was way beyond her years.

Optimism~ in hopes that she will achieve above and beyond every single persons expectations.

Stress~ thinking of the unrelenting commitment we must make, and renew with every waking morning.

Anxiety~ trying to hang on every single important word The Institute Staff utters. Trying desperately to retain all important information in a brain that doesn't seem to have anymore vacant space.

Sadness~ for how hard we collectively have to work, for how much we all have to give up in order for any sort of recovery.

Happinesss~ that we have the opportunity to work this hard. I would prefer to have way too much, than not enough.

Admiration~ As I sit quietly and glance around the room, I am filled and almost overflowing with the most amazing feeling. I carefully scan each and every family. I am in awe of the sacrafices everyone makes for the love of their child. I am witness to some of the most beautiful, strong, children ever. They have not only survived, but have thrived. I am humbled by a sight, I never in my life thought I would have had the pleasure of experiencing.

This is just a small snapshot of the emotions that were flowing within, without me.

Needless to say, I feel emotionally spent, drained, exhausted, deflated, as though there is nothing left....

Tuesday, June 8, 2010

Mack Truck

I'm back and I find myself completely mystified as to why I feel like a Mack Truck has hit me. I feel the need to add, this massive truck not only hit me, but also rolled back and forth a number of times!

Upon my return, I experience nonsensical actions and thoughts. I make strange decisions. I do stupid things. I often think my head might spin 47 times and then pop off.

I haven't the brainpower to completely over analyze this phenomenon, but the following is the best I could come up with:

It must have to do with having to pack and travel. Being jet-lagged and dealing with a time change is no easy feat.

To that, I say who cares.

Oh I got it, it must have been the 1 hour and 20 minutes of sleep I got the night before the first day.

To that, I say pu-lease, I have pulled my fair share of all nighters prior to an assortment of things.

Oh I know, the days at The Institute are extraordinary long.

To that, I say so what.

Upon our return, I have never in my life felt this wiped out.

Not after many nights of partying.

Not after finals week.

Not after 1-3 weeks of training on a new job.

Not after planning a wedding.

Not after purchasing a house or car.

Not after the nightmare of infertility.

Not after all of the ups and downs of adoption.

Not after anything.

Every single event, in my entire life, pales greatly in comparison to helping Aviana recover! As far as I'm concerned, this is a life and death situation. We do everything in our power to give her life, or she may as well be...

To be continued....

Saturday, June 5, 2010


We just arrived home from our weeklong trip to Pennsylvania. We were visiting the wonderful people at the brain injury institute. I once again, think these people are angels disguised as staff members :o)

I feel almost the exact same way I felt upon our previous return. The only way I can somewhat describe it is this:

I left with a semi-full brain; all fresh, healthy and gooey. As the days of the week progressed, I felt as though my brain were being wrung out like a wet towel. Today, my thinking unit is dry as a bone and completely unable to function properly.

Once I recover from this insanely intense week....I will be back to put sentences together once again :o)