Monday, August 31, 2009

Honored

Aviana has received another medal. This medal was given to her by Sgt. Merenda. He tells of how he received this honor best...

“I used to be in a Airborne unit which meant we jumped out of airplanes to go where ever we went. In March 1997, I was making a jump into Camp Leguene, which was suppose to be a airfield seizure training exercise. That jump I was carrying way more equipment in my rucksack than usual, actually it took two other guys just to help me get up once I had to carry it. Our jump was at 2 am and when I came down my rucksack was so heavy it became a anchor and before I landed I somewhat landed sideways. In the process, my back hit a stump on the ground and I was hurt extremely bad. In the event you get hurt, you are suppose the use a red glow stick so the medics can find you. The injury to my back pinched and compressed my spine which paralyzed me from the neck down. I could not pop open a red glow stick for the medics to find so I laid there yelling and then eventually stopped. Jumping out of airplanes in the army can be very dangerous and especially jumping into darkness. I was found approximately 3 hours later by my own unit. I was medivac to the local hospital and after examination; I was told it would be a miracle if I was able to use my arms and legs again. I called my family and let them know of the accident. I didn’t want to be in that condition for the rest of my life so I would lay there and fight to get up. A week later, I began to get all the feeling back into my arms and legs and very shortly after, I was back and running like it never happened. That is the hope I have for Aviana, no matter what doctors say, sometimes it’s all about her fight.”

“Also, the item your mom has is a St Michaels medallion. It was given to me during my time when I needed help the most, and I felt it was time to let whatever good luck that it has help Aviana. It is actually pretty small but just something I thought would help. I am not catholic but it’s funny to watch people reactions, paratroopers are given the St. Michael to help protect them while jumping.” Thank you Sgt. Merenda, we love you!!!

Friday, August 28, 2009

Stupid Girl

This describes my actions of yesterday to a tee. There are certain things I am NOT strong enough to do. I know very well what they are and have avoided them like the plague. I talk to myself, I tell myself:

- do not go to the gym

- do not go to the scrapbook store

- do not watch any sort of video of Aviana

- do not look at her scrapbooks

- do not go to the accident scene

- do not read the police report

I broke my very own rule, I knew better!

It all started when I decided to video tape Aviana’s therapy the other day. I pushed play to make sure I was able to record on the current tape. There she was. In the flesh. The most beautiful little girl, so incredibly full of life... and love!

I broke down. I lost it. I quickly told myself....there is no crying in the physical therapy room, especially if Aviana is not crying :o)

The very next day, what did I do... I sat and watched, and cried, and watched, and cried, and watched some more. What was I trying to do to myself? I couldn't stop! I was out of control! She was perfect. A perfectly healthy brain. A perfectly healthy body. A perfect smile. A perfect little voice. Perfectly moving limbs. So smart, so cute, so sweet, so everything. Wonderful in every possible way.

I miss and love her so very much!

Thursday, August 27, 2009

New Normal

The first thought that entered my mind upon waking up this morning was Aviana. She was in her bed, sprawled out, blankets to her exact preference, bed head to high heaven, Lamby close by, you know, the norm. The morning haziness cleared and I quickly realized... that was life as it used to be! Now~ the bed is empty, she is in one position only to be moved by someone else, there is one blanket across her whether she likes it or not, slight bed head to her newly grown hair, Lamby hopefully close by, oh yes, that's right, the new normal. I must say, she is still a cute, sweetie pie wherever she may be!

Wednesday, August 26, 2009

Tolerant Girl

Aviana did really well with her bolus feeds yesterday!! I am hoping today follows in this same fashion.

Family Meeting

There is a family meeting today and while this is nothing like the one of the past, I can't help but every once in a while get a surge of panic which shoots through my veins!!

I think they should change the name. I don't like it! No, I'm just kidding, but for me it sure has a negative connotation.....even though our last one ended up being not even one iota as bad as we thought it would be :)

Tuesday, August 25, 2009

What's That You Say??

I forgot to include one of the most exciting things that happened last week. Aviana started making actual sounds within the past 5 days. These simple little noises are music to our ears!!

One Down

By the time Friday rolled around, I was shocked and couldn’t stop making the same exact comment all day long, many times, to the same person, over and over! “I can’t believe Aviana has been here for one week already.” Aviana has now successfully completed a full week of therapy and is into her second.

I must say, she has a very busy schedule. She has occupational, speech and physical therapy in the morning. She is then usually wiped out from all of her hard work and takes a little snooze. She then wakes up (or has to be woken up) and does it all again in the afternoon. At first, she was quite resistant, but adapted fairly quickly. With each passing day, she is getting better and more comfortable in her surroundings.

I have been learning a lot and feel I am just about ready to roll her all around the mat on my own. I guess I should go get a mat though, that would help! I am looking forward to being her therapist. I wish you could see what I call her F-U eyes. This look is priceless. When they are making her do stuff she really doesn’t want to do, she shoots them the most telling eyes I have ever seen. I am sure I will be the victim of those penetrating, dagger eyes many a time!

Very exciting news…. They are going to try to start bolus feeding today. Right now Aviana is on a continuous drip feeding. She eats from 4pm until 8am and then is able to be unhooked for the rest of the day. We have all noticed that Avi has gained quite a few pounds over the last week! Bolus feeds are basically an amount of food all at once....like how a normal person eats. This feeding will go directly into her stomach tube rather than her intestine tube.

I had asked Kaiser when we would first be able to challenge her with a bolus feed and they said in about a month. I was so bummed when I heard that, it just seemed too long to wait. UCD is more than willing to try today and I could not be more thrilled by this fact. Please cross your fingers and hope that Aviana does not throw up and can tolerate the feeding. Life would be SO much easier if she is able to tolerate this feeding. We would be able to feed her like 4 meals a day and eventually she would be able to get that big ass tube converted into a much more stream lined Mickey button. Isn’t that completely appropriately named for Aviana :o)

Please keep us in your thoughts today; this would be a wonderful day if she does well with this new, slightly modified (for the better) way of eating!!! Oh by the way, Aviana's new thing is to lift her shirt and go at her feeding tube...she once again wants that sucker out!!

Monday, August 24, 2009

Small Stuff

I have read the book and have longed to be "that" person, the one who doesn't sweat the small stuff. Up until the accident, I had by no means accomplished this goal. Over the course of the last few months, I have felt a shift; the tide has begun turning within me.

Today, I had the first true test of my newly discovered ability..... I was making my way to the hospital and a rock smacked against my windshield. The pebble put a good sized chip in my beautiful, cleaned (might I add) windshield. I didn't even flinch; my heart rate must have maintained the same beats per minute as just prior to this occurrence. To my surprise, there weren't even any profanities flying out of my mouth.

I calmly smiled and said to myself, (actually out loud) "Oh well," and carried on with my day. I just might be evolving into this "so called" Small Stuff Evader.

Who is this new girl?

I just might be able to get used to her ;)

Strong Enough

How do you do it? How do you stay so strong? If I were in your shoes, I would NEVER be able to handle what you are going through. I admire you! These are questions I have asked one friend in particular. She has always told me.....you just do, you have to.

I could not wrap my brain around this way of thinking and was convinced~ if I were ever in a terrible predicament; I would surely be splitting into pieces and falling all over the floor.

Well, yes I have found myself in such a predicament and I finally understand the conversations between my friend and me. I am now faced with all of the above questions and statements. While I fully understand these comments, I can't help but feel slightly uncomfortable. I now know that when faced with a terrible situation, you can dig down deep and find the strength which has always been there. I just had no idea it was dwelling in the depths of my being. It makes me think that we may not know what we are fully capable of.

I used to watch Oprah and see people sit on stage and explain various horrific stories. I would think to myself~ How are they still standing? How are they speaking? Functioning? I now get it, you just do. You have to. What is the alternative? There are hundreds, possibly thousands of things I did not think I was capable of handling.

I did not think I was strong enough~

to hear my mom’s voice letting me know what happened.

to drive myself to the hospital to see what happened.

to sit in a room with a doctor telling us there is not much hope.

to have Gary sitting in another room struggling with the affects of being hit by a car.

to sit and wait as my daughter had not one, but two surgeries, back to back.

to see her sweet face afterwards.

to think about her being air lifted to UCD (this one was very difficult.)

to having to call some family and friends and explain what had happened.

to see her hooked to every machine in what seemed like creation.

to see her puff up like a blow fish.

to feel her skin and not feel her at all.

to constantly talk to doctors and nurses who do not think she will ever walk, talk, eat, etc.

to look at CT scans of her severely damaged brain.

to have to endure yet another surgery.

to look at a multitude of medications which are pumping through her little body.

to watch her beautiful long lashes disappear due to swelling.

to come in to find her earrings removed also due to swelling.

to sit and watch her lie there and be able to do nothing.

to pick up the pieces of our broken family puzzle and put them back together.

to walk through a house of constant reminders of better times.

to see her smiling face in numerous pictures everywhere I look.

to having family dinners with one very important member missing.

to have to make life or death decisions.

to arrive at the hospital and go through a “family meeting.”

to talk about the whereabouts of my daughter’s bone flaps.

to bear another surgery to put her skull back together.

to see her beautiful head with what seemed like 500 embedded staples.

to talk to police investigators and lawyers about the accident.

to read newspaper articles and people's comments about “our” family.

to see my family members actual names in print in relation to a terrible accident.

to reminisce about Aviana and all of our wonderful memories of her.

to see her terrible transition to Kaiser, her body in complete distress.

to make it through my mom's birthday celebration without that special little someone.

to hear another doctor pull us over to a scan and express their opinion as to what a terrible outcome they think this will be.

to see her tolerate yet another surgery.

to suction her mouth as she threw up every time something hit her stomach.

to watch her be wheeled out as she needed to undergo another surgery.

to pack her prized possessions for another transfer.

to ride in an ambulance along with my baby.

to watch her struggle through some of the physical therapy.

to make it through Aviana's 3rd birthday party without crying.

I know that anyone who has been through something awful has their very own detailed list. While yes, I have cried enough tears to fill the Truckee River, what I am trying to say is.....I think we are all stronger than we give ourselves credit for!

My family has endured so much in the past 9 weeks, but we have all also had the privilege of witnessing the good which arises out of a situation like this.

I have felt blessed~

for all of our family who has come together in a way we have never seen.

for all of our family and friends who came from near and far to gather in a small room in support and then caravan down to pull together in an even smaller area at UCD.

to meet the heroic man who resuscitated our baby.

to know there was a Good Samaritan helping Gary, too.

for the doctors and nurses who work diligently to help our little angel.

to experience the outpouring of love and support through cards and comments.

by the beauty of watching Aviana wheeled back in the room after another successful surgery.

by the kindness and sensitivity my family has expressed with each other through the worst time of our lives.

by the amount of visitors who arrive to make sure we are all OK.

to watch Aviana’s fighting spirit.

by the look of concern on her little friends' faces.

by the delicious dinners provided by our friends and family.

by the perspective we have gained along the way.

by the fact that the trees look greener, the sky looks bluer, the clouds look puffier.

by the appreciation I now have for my very own girl.

by the patience we are in the process of developing.

to watch funny shows and be able to laugh out loud.

to see Aviana make even the slightest of improvements.

to see the police department care so deeply about our family.

to see Gary heal physically day by day.

by the true giving spirit of people.

for meeting and developing new friendships.

by meeting a new friend who also happens to be Aviana’s lawyer.

to watch Aviana transition back to herself.

by her entire medical team and all of their expertise.

to be able to put Aviana’s earrings back in.

to see the return of those beautiful long lashes.

to be able to dress her in her own clothes.

to see medical equipment get disconnected and disappear.

to be able to take Aviana outside.

by all of the people who celebrated Aviana’s 3rd birthday with us.

that Aviana is still with us and getting better with each passing day.

to have the most wonderful husband; to truly be a united front.

Wow, I had a lot to say!!

Sunday, August 23, 2009

Birthday Blessing

Aviana has always been the life of the party. Even though she has never talked much, her presence was always known. She arrived from Guatemala just one month prior to her first birthday.

At her party, I vividly remember her being passed around all day long. She has always felt more than comfortable in just about anyone’s arms.

This year, on her third birthday, the same rules applied. Aviana’s room was a revolving door of family and friends from morning until night. She was so calm throughout the entire day. She once again enjoyed being passed from lap to lap. She looked at ease, peaceful.

We all went outside and of course she was thrilled to be basking in the sunshine with the breeze blowing across her little body. We all had an amazing day with her and felt so blessed to be fortunate enough to spend her 3rd birthday with her.

We look forward to a lifetime of birthdays with this special little girl! Our friend Jillian also took many beautiful pictures during Aviana's birthday party. She e-mailed me the link to share with everyone :o)

http://www.flickr.com/photos/37213271@N04/sets/72157622058954684/

Please copy the above address as we are unable to create a link.

Saturday, August 22, 2009

Baby Snatcher

The most overwhelming urge to steal my very own baby washes over me with each passing day and every single time I have to leave her sweet face behind!

Thursday, August 20, 2009

Reoccurring Question

One single question continues to come up throughout our time in hospital land. Do you have a support system? This question is usually followed up with, who is within your support system? Are these people in town? Do these people help out with visits to the hospital? Is there anything else you may need or anyone else you may want to talk to?

The first time I answered these questions, my response was so mechanical, almost robotic in nature. Yes, I have many family and friends. Yes, most are in town. Yes, they all come to the hospital. No, I can’t think of anything or anyone else I need.

Over time, these simple questions would linger for long periods of time within me. I feel so incredibly grateful for every single one of my family members and friends. I am so grateful for my wonderful neighbors. I am so grateful for every person I have met along this journey. I am so grateful for every comment made in support and love through this blog. I am so grateful for all of the people who follow along silently in support.

I cannot imagine going through a tragedy of this magnitude, and then, having to answer no, I do not have anyone and yes, I need someone to talk to.

I thank each and every one of you who have rallied around our little family and taken care of us in every way possible. The outpouring of love and support from all of you is what life is all about!

Thank you!

Tuesday, August 18, 2009

Child Safety Locks

My friend Jen suggested the most perfect locks prior to Aviana’s arrival. It was a lock which was installed like any other, at cabinets, drawers, etc. The snazzy thing about this particular lock is you can simply swivel it to one side and waa laa, there is no more catching mechanism. No need to unscrew anything, it can be transformed in one second flat. She explained this is great for time in between children, once your kids grow up and do not require them, etc.

The child locks have always driven me crazy. I think it took me an abnormally long time to get somewhat used to them. Even 1 ½ years into having child locks, you could still hear a loud, “Ahhh, shit” echoing down any given hallway. Yes, we were still unfortunately swearing in front of the Little Miss, but trying hard not to.

I will never forget the day I first pulled on a cabinet and it simply opened. I looked inside like something had severely malfunctioned. I saw the post swiveled to the side and immediately asked Dave about it. He said he turned it, because Aviana would not be getting into the cabinets anytime soon.

This simple action tore my heart into pieces. I suggested we leave the locks in their normal position. Unlocked locks just felt strange. I never thought I would live for the day when I was requesting a child lock stay in place. I knew this was an unrealistic expectation and did not push the issue. I have never once unlocked one of these little contraptions myself.

I am noticing that slowly, but surely they are all magically becoming unlocked. With each pull of an unlocked cabinet, my heart breaks just a little bit more. I could never have fathomed in my wildest dreams that THIS would be the reason to disengage these little devices. I find it interesting how such a small piece of plastic can hold so much meaning!

Best Gift Ever

My cousin Erin put together a gift for Aviana and gave it to us on her birthday. I did not plan to watch it for a long time as I did not feel ready.

We ended up watching it and I cried like a baby. This video was not intended to have that affect, but let's not forget, I am a Highly Emotion Girl at times :o)

Thank you to Erin for all of your hard work and also to everyone who contributed to this beautiful video. I will cherish it until the end of time!! ">

A Day In The Life~Take 4

Take 4~ unbelievable! Early on, there had been so many times which led us to believe we would never have made it to this point. Well, we are here and we are so grateful for every hoop that Aviana has jumped through!

I was extremely nervous about Aviana's transition back to UCD. It took her approximately 2 1/2 days to calm down when moved to Kaiser. She was shaken up and it was one of the most difficult things to have to stand by and watch. Her heart rate would go so incredibly high and she would arch her back. Terrifying!

I had my very first trip in an ambulance, in the front seat of course, but I could still talk to her a little. I think she was also able to hear my voice as I talked to the ambulance driver. You know covering the basics like: How do you turn the lights on? Can we turn the lights on? Do you have an incredible appreciation for life based on all of the awful things you see on a daily basis? etc.

We arrived at UCD in the emergency department. Dave met us at the door. We walked through and I felt as though I were in a movie. One of the strangest experiences of my life. The gurneys were lined up all down and around the halls. It was such a sad sight. Aviana did extremely well. She cried a little on the ride.

We arrived at our room and I immediately sat in a chair and held her tightly. She was doing unbelievably well and was even about to fall asleep. She suddenly threw up all over both her and me. I felt badly. They had given her medications just before we left and I think the bumpy ride upset her stomach. Dave and I gave her a bath and got her all settled in. I could not believe how well she adjusted. Did she find Davis familiar in some way from her prior visit? Is she just able to adapt better to transition? I don’t know, but I was happy as a clam.

The only downfall, I was convinced Aviana’s room smelled like dirty socks. Up at the window...dirty socks. At the crib....dirty socks. At the sink...dirty socks. Everywhere I went....dirty socks. I did not understand, I did not smell this upon entering the room. We were walking down the hall and into the elevator...dirty socks. I couldn't help but wonder why UCD smelled of dirty socks???? I was mystified. This dilemma was unfortunately quite consuming. I think Dave was tired of me talking about it : ) Finally, we got into our car...dirty socks. I said, "OK, what the hell is going on!" Halfway home, I finally figured it out...it was ME the entire time. I smelled like dirty socks.

I had forgotten that Aviana threw up all down the left side of my tank top. I bet you all saw this coming didn't you?!? All the nurses had changed shift about a half hour after our arrival. The new nurses and doctors must have been holding their noses behind my back :o)

Anyway, Aviana has been very calm in her new digs and for that I am thanking my lucky stars. The new rule is plain and simple and will be in place for the rest of our lives. If she is happy, we are happy! OK, I already need to make a disclaimer to the new rule. She won’t be all that happy when all of us are working her.....if we are doing what is best for her at all times, then I am happy!

Monday, August 17, 2009

Dear Aviana

Every year since Aviana was born, I write her a letter. I have always planned to present her with these letters when she is older. I hadn’t picked an exact day, but when the time was right. This year was no different.

I had origionally decided to keep this letter private, but then realized, the main reason I keep this blog is so Aviana can one day go back and read through every single entry. I tried to stop myself from reading the prior two years of letters, but could not. I now post this note with a tear stained face!

Dear Aviana~

Your 3rd birthday is in a few days and while I normally write excessively about all of the wonderful things you have accomplished over the past year, this year will be a little different. I want you to know, I am so unbelievably proud of all you are, all you have learned over the past year and every single cute thing you have said and done. These wonderful things have previously been written about and are extremely important to us. We have loved witnessing these moments along the way, but this year, I choose to write about what has happened and your incredible spirit.

I will not write again of all of the cute things you have done, but I will write of who you are at your very core! Only you, truly know who you are, but I will venture to describe what I see.

I remember your Aunt Susan called while we were excitedly packing our bags to fly to Guatemala to pick you up. Her mother was visiting from Guatemala and the two of them wondered what exact part of the country you were from. I told them Guastatoya and they said they would call me back. Soon after, the phone rang and they said, “Now, we know this is a generalization, but the people from Guastatoya tend to be independent, extremely opinionated and very strong-willed." I thought “Wow, if this is the case, this little one is going to be a handful.” Little did I know at that time, how important this phone conversation would be!

We met you and over the months got to know you. We did find all that your aunt said to be true. We referred to our conversation often and laughed about it. You never talked much up until just prior to the accident, but always made your spirit known to all. You were a sweet little, fiercely independent, strong-willed, spitfire with incredible amounts of attitude at times.

Once able to speak, you let all of the things on your mind be known. We butt heads many times. I was always a strange combination of frustrated and proud at the same time. I was frustrated to your face, but once I was talking to Dave and able to reflect on your actions, I was so proud of who you were and who you would end up being. Once again, at that time I did not realize the magnitude of how important all of these interactions would be.

The morning of June 17th, Nana called and was overly anxious to get her hands on you. She asked if she could come pick you up for a few days. I had really been loving on you, so we compromised at one day. I packed your Tinkerbell overnight bag and you knew exactly what that meant. No rules and good times with your favorite people on earth!

Nana arrived and we sat and talked for a little while. Once it was time for you to go, I asked a routine question which always resulted in the same answer. Do you want to go with Nana, or do you want to stay with Mommy? While the answer was always, without a shadow of a doubt, go with Nana, this time was different, you plopped your little butt in my lap and said “Stay with Mommy.” I was shocked and may have remembered that single moment for the rest of my life already, but now this simple interaction has a whole new meaning. You changed your mind about 30 seconds later to “Go with Nana,” but I can’t help but wonder, in that single moment, did you know something we all didn’t???

About an hour to an hour and a half later, I was getting out of my car and going into a store. Nana had called to ask a question and then said, “Aviana wants to talk to you, do you want to talk to her?” I remember feeling a slight hesitation as I was in a hurry and just approaching the door of the store. I thought to myself, it is more important to talk to you and said yes. This was one of the best decisions of my life. I next heard your sweet little voice, “Hi, Mommy” I said “Hi, Baby are you having fun with Nana?" You said, "Yes, had yogurt peach." We talked a little more and then just prior to getting off the phone, I said, "I love you Honey." and you said, "I love you, Mommy!" I am more than thankful that I made the right decision in that moment, because within an hour and a half, our simple little lives were forever changed.

You were hurt really bad in an accident and were not expected to make it. I could not believe my ears as the doctor sat and explained this to us. He said they could try surgery, but would only do this due to your young age. He also advised us, this surgery was still a long shot. We have been told many things over the past two months that no ears should ever hear in a lifetime. We have weathered through all of these conversations, but most importantly, you have survived six surgeries to date and are doing well.

You are already exceeding what they had planned for you. You are a survivor in every sense of the word. You have endured so much in your short 3 years of life and are an inspiration to everyone around you. We see your firey spirit every second of everyday. We can actually hear your words, you are saying “Don’t you count me out, don’t you dare!” I have loved you in the past, but have never loved you like I do now. I admire you in every way possible and feel I am lucky to witness one of the most remarkable events of my lifetime...your recovery!

Thank you for letting me be a part of this journey. I love you and will be here for you every step, of everyday, for as long as we both shall live!!

With all my love,

Mommy

A Plan You Say…..

We have been so incredibly busy; I have not been able to write and am so behind on the blog. This may be a very long note. As usual; I have a lot to say!

Aviana ended up having so many feeding issues. For this reason, it took longer than expected for her to be transferred back to UCD for rehabilitation. As you know, Aviana had her G/J tube put in Wednesday. All went very well; thank you for keeping her in your thoughts!! From that day forward, she has done really well with her feeds. On Thursday morning, they said she would be moved to UCD on Friday or Monday. On Thursday night at 9pm, they were still unsure of when she would be moved.

Under normal circumstances, I would have been continuing my journey on Go with the Flow Ave. I have to admit, I was starting to get pretty anxious about the timeline. I was unsure if Aviana’s 3rd birthday party would be at UCD or Kaiser on August 16th.

I arrived at Kaiser Friday morning and discovered the answer to the long awaited question; Aviana WOULD be going to UCD on Monday and would have her birthday party at Kaiser on Sunday. I kicked it into high gear. I immediately called my mom and let her know. My friend Amy was on her way to visit, I called her with the news. I had previously sent out an E-vite, (yes, I have a business where I scrapbook and make cards and invitations for my customers, but have been reduced to sending out a last minute e-vite) which read Location: UCD or Kaiser. I was just about to change the location when the Child Life lady walked in to discuss Avi’s party. We went over all possible decorations and fire codes. Can’t use tape on the walls. Can’t hang anything from the ceiling. Can’t have any latex balloons. Can’t use any paper products which are not slick looking. Can use the playroom for 30 minutes. Can have mylar balloons, etc.

Child Life walked out. I opened my E-vite to make changes and the doctor walked in to talk to me. She started to discuss Aviana’s impending trip to UCD. I thought she was about to confirm that Avi would be going there on Monday. Had I lost my mind, had I really believed this was set in stone, had I not learned a thing through the process of brain injury and all it involves? What was I thinking?? The doctor went on to say, she thought Aviana would be transferred that day and she should know within a couple of hours. Party plans….dead in the water!

For some reason, I thought you could change yourself fairly easily and become a "go with the flow" type person. I had been doing fairly well, but at that moment, I realized you can’t just basically flip a switch. I relapsed to my old planning ways. Hours went by with no word. Finally, at 4:15 they told me the ambulance would be there at 5:45 to pick Aviana up.

As we packed Aviana’s room, that old familiar feeling washed over me. I got a little sad, because we had (once again) met some wonderful people. We had to say goodbye to everyone again and promise to come back and visit. I immediately had a talk with myself. This, once again, was Aviana's graduation day. She was embarking on the next step in her recovery!

Sunday, August 16, 2009

Happy Birthday

to our sweet little girl!

Friday, August 14, 2009

Good Day Sunshine

For the first time in 58 days, the sun was able to shine down and kiss Aviana’s sweet face.

For the first time in 58 days, the breeze danced all around and through her little body.

For the first time in 58 days, Avi was able to breathe in clean, fresh air.

For the first time in 58 days, she was able to feel the grass beneath her tiny little feet.

For the first time in 58 days, Aviana was allowed to relax under a beautiful maple tree.

For the first time in 58 days, she was able to feel an ant crawl on her skin.

For the first time in 58 days, Aviana was able to take a small nap in the outside world.

For the first time in 58 days, she was surrounded in the sound of nature.

For the first time in 58 days, we were able to experience the most beautiful sight, our girl in her favorite place....outside!

Wednesday, August 12, 2009

Two Peas In A Pod

Aviana's best friend in the whole wide world is a sweet little girl named Lily. Aviana and Lily have the most amazing connection. Last week, Lily came to visit her dear friend for the first time. Sarah held Lily next to Aviana's bedside. One of the cutest conversations I have ever witnessed transpired:

Dave: Lily, did you get a new haircut?

Lily: Looks at Dave and shakes her head no!

Sarah: Lily, you didn't get a new haircut?

Lily: Looks at Sarah, doesn't say anything.

Jen: Lily, would you like to get a haircut just like Aviana's? (Jen, thinking she will emphatically say....NO)

Lily: (Without one bit of hesitation, and in the sweetest little voice) says Yes!!!

She then proceeded to lovingly touch Aviana's hand. This was, hands down, one of the most touching moments I have ever encountered between two best friends!

A true, love without end!

Tuesday, August 11, 2009

Butterfly

Aviana changes on a daily basis. To me, her metamorphosis is reminiscent of that of a butterfly. The purpose of a cocoon is to protect an insect from a harsh or unfriendly environment. When this accident first occurred, it was obvious; the environment in Aviana’s brain was clearly both harsh and unfriendly. While in her coma, she was safe and sound in her little cocoon.

Did you know that often times the most beautiful butterflies have actually emerged from the ugliest cocoons? They say, for this reason, many people consider the process of the cocoon to be a miracle of nature itself. Aviana has definitely traveled from one of the ugliest and most horrific places. I can now say, with confidence, our sweet little butterfly is emerging.

I feel she will continue to mirror the transformation of the butterfly and be a miracle herself! Even just over one night, she changes in some way. This has been especially apparent over the past week. The improvements are subtle and may not be completely noticed by the doctors or other people who do not know Aviana personally. To us, the changes ARE there and continue to give us hope on a daily basis. I am so thankful for these changes.

With the exception of Dave and my parents, I have kept these thoughts to myself. I have been feeling slightly off this past week so I wanted to make sure what I was seeing was true. I will no longer be quiet because EVERYONE who comes to visit is noticing the same thing. The nursing staff, as well as some doctors are taking notice as well.

Aviana has a new favorite item. It is the mat in the playroom. My dear friend Amy came to visit on Friday morning. I have been dying to get Aviana on the mat. I had my hands full with Aviana, so Amy was juggling her own son Cooper, an exercise mat and a large bed sheet. She assembled the mat and we positioned Aviana on it. Aviana loved being on the mat and most of all loved being able to look around the playroom.

With Amy’s help, I turned Aviana onto her stomach. Amy and I watched in amazement as Avi pushed her cute little butt up in the air and moved her legs in a crawling motion!! Aviana’s arms were not moving and her head was straight down on the mat. We continued to do this for a little while. Not too long later, Avi let us know, enough was enough!!

Dave, Dinah (Dave’s sister) and I did this very same thing on Saturday night, with even better results. Aviana lifted her head, tried to move her arms AND was moving her legs. We were over the moon with excitement!

Like I said, this little butterfly is on her way!

Aviana will be having her tube put in tomorrow morning, please send all of your good thoughts her way :o)

Monday, August 10, 2009

Medals 4 Mettle

We recently met our new found friend Jacqui as she was working the garage sale with the rest of her wonderful family. She sent me a message a few weeks back and explained how she wanted to present Little Miss Aviana with a medal.

She challenged herself, trained hard and successfully completed a half marathon. She received a medal in the shape of a shamrock for all of her hard work! I admire her. I am someone who runs three miles total and feels as though I ran twenty!

Jacqui hand delivered the medal to Aviana last week. We were honored to see her again and accept the medal. Medals 4 Mettle is an amazing non-profit organization. I will post the link below. If you have a moment it is definitely worth checking out. It is very inspirational!!

Thank you again, Jacqui!

http://www.medals4mettle.org/

Saturday, August 8, 2009

Epiphany

Aviana has a bracelet which hugs her left ankle. This bracelet was put in place to protect her from being stolen from the hospital. If anyone tries to leave with her, an alarm will sound.

I just realized last night, this bracelet was designed for parents, too. I wanted so desperately to scoop her up and RUN!!

Friday, August 7, 2009

Realization

I feel my brain is at maximum capacity. That being said, sometimes I cannot see the most basic of ideas. Sometimes, I feel as though I am barely above water and at any moment I might be pulled under.

Aviana is thoroughly bored to bits with her room. Why couldn’t I see this? Like I previously said, I just realized this fact once we took her for her first ride in the wheel…wagon.

Prior to the accident, a normal part of my daily activity was to buy something for Aviana, not some big, huge, item every single day, but something nonetheless. I have been severely struggling as I shop in any sort of arena. I have to refrain from going by any sort of toddler department. If I pass by a store that reminds me of Aviana, I have to turn the other way and fill my head with meaningless crap just to get by. It takes everything in my being to not look. I have had to break a three year habit virtually overnight!

Needless to say, it has been very difficult, because even the simplest of items can send me reeling...case in point- the Mickey Mouse chicken nuggets harmlessly dwelling in the Costco cabinet next to all other adult processed chicken products. What I am trying to say is, she surrounds me, wrapped up in everything I do and everywhere I go!

Anyway, I am so good at going crazy on the background story. My point is Aviana’s room is SO BORING, we HAD to go shopping for items to spruce it up. I felt like a kid in a candy store. My eyes were wide with excitement and I was beyond thrilled at the challenge of purchasing items for this particular stage in Aviana’s life. Let’s just say we went slightly crazy, not completely, but slightly. I had not shopped for my baby girl in 6.75 weeks!! She has thoroughly enjoyed all of the toys and books we purchased.

She has made great advances in her progress. I feel she is suddenly doing so well, because of her recent ability to tolerate her feeds and of course, because of the newly purchased items. One small advancement on Aviana's part, quickly catapults me into a stronger, happier person who feels together we can conquer the world! I know that sounds extreme, but it is the absolute truth. This little 32 pound girl has the most amazing will to fight. I admire her in EVERY way possible.

While at UCD they said a great sign in a child when recovering is they will pull at their tubes. They said this action is completely purposeful and what they love to see. We always felt Aviana would be the type to rip at them. Now that she is finally feeling better, this was one of the first things she did. We are so proud of her with every sock covered swipe of that tube. There is a lot to be proud of, because I could not begin to count how many times she repeated this action yesterday.

Another realization: Aviana is bored with all items in her crib too, yes, even her beloved Lamby. I never thought I could say that. She proved me wrong. About two weeks prior to the accident we had new counter tops installed. The wonderful people who installed them came to the hospital last night to visit Aviana. They brought a big basket with books galore and a medium sized Minnie Mouse. I had previously received some Mickey and Minnie Mouse stuffed animals, but like I said failed to understand how much she needed them in her crib at that moment!

With my new found knowledge of her current situation, I carefully tore (who are we kidding, I ripped) the tags off and placed Minnie up next to her face. She was crying, because she was not able to grab Minnie with her left arm as she was laying on it. I assisted her and she honestly put a death grip on Minnie’s back. She then wrapped her right socked arm around the other side of Minnie and pulled her in so close that her cute little lips were touching Minnie’s face. She pet Minnie with her socked hand until she fell asleep. We all stood and watched in amazement with smiles plastered on our faces.

Mommy will be clueless no more. I had saved some party items to decorate her room on her birthday and have them ready to go for today. I never knew I was such a long winded person. I bet you may prefer when I blog from my phone. I have very little patience with that and end up writing two sentences :o)

Thursday, August 6, 2009

Get This Tube Out Of My Nose....NOW!!!!

We are at the hospital right now and Aviana is trying with all her might to pull her feeding tube out of her nose. She has been so successful that the nurses had to tape a sock on her hand! She is relentless and even with the sock, she won't give up. We are thrilled to pieces as we sit here and watch her frustration....doesn't that sound awful? No, it sounds wonderfully promising!!

Tuesday, August 4, 2009

A Short Story For You

A highly emotional girl wakes up and shortly after speaks to her father, Highly Emotional Girl loses it and cries her eyes out at the thought of her daughter's impending 3rd birthday and reflects on the day her and her sweet husband had to return all Mickey Mouse decorations.

Highly Emotional Girl carries on with her day and on the way to the hospital, calls to wish her sister-in-law a happy birthday. Highly Emotional Girl cries her eyes out again in the hospital parking lot and proceeds to drip tears all the way to the door. Highly Emotion Girl has been highly emotional for 2-3 consecutive days, very unusual for this girl. She pulls herself together, fixes her face and goes in to see the most Beautiful Girl ever created. Beautiful Girl is very calm, calmer than any of the past few days.

Funny Friend Joe comes to visit Beautiful Girl. Highly Emotional Girl is on the verge of tears again, why, she is unsure, but she manages to keep it together. Nice Nurse comes in and suggests we put Beautiful Girl in a wheel barrel and pull her up and down the hall. Highly Emotional Girl thinks it is a wonderful idea and starts to get giddy at the anticipation of taking Beautiful Girl out of the confines of her now boring room.

All of us pull Beautiful Girl down the hall and into the playroom. The nurses leave us and Funny Friend Joe puts a ball on Beautiful Girl’s chest and tells her to “grab the ball, get it.” Beautiful Girl works and works and tries her best to GET THAT BALL. She finally kind of gets it and then it falls and she immediately starts crying. Simultaneously, Big Brother walks into playroom. Concerned Father had called Big Brother and he came down immediately. Highly Emotional Girl bursts into tears….AGAIN!! Thank God for waterproof mascara.

Highly Emotional Girl scoops Beautiful Girl up into her arms and holds her to look out the window. Beautiful Girl loves every moment, her eyes darting all over, just taking in the outside world. Beautiful Girl LOVED the wheel barrel so much. Beautiful Girl had some tests done yesterday. Beautiful Girl does not have digestive problems. Beautiful Girl’s shunt is NOT malfunctioning. Beautiful Girl seems to throw up for neurological reasons. Beautiful Girl will have a NEW tube put in through her nose to her Jejunum (past stomach and Duodenum) tonight. Beautiful Girl will finally get to eat again. Beautiful Girl will be evaluated for a few days to make sure she is tolerating feeds. Beautiful Girl will then have G/J tube put in. Beautiful Girl will then be evaluated for a few more days to make sure it is OK. Beautiful Girl may then be transferred to UCD.

Highly Emotional Girl will take Beautiful Girl out of her room as much as possible. Highly Emotional Girl will continue to press Kaiser to “PLEASE JUST LET ME TAKE HER OUTSIDE!!!!!!” Highly Emotional Girl realized just how boring Beautiful Girl’s room is and will go on shopping spree. Highly Emotional Girl will try to not be so highly emotional and return to normal state of 2-3 days prior. Highly Emotional Girl hates being highly emotional as she scares the hell out of everyone around her.

Highly Emotional Girl is doing much better and is going back to the hospital now as Beautiful Girl may have woken from her slumber.

*** A wagon NOT a wheel barrel (for some reason I keep calling it the wrong name)***

Monday, August 3, 2009

Carwash

I have always found the carwash to be a complete source of comfort and tranquility. I turn the music up extremely loud and thoroughly enjoy the next 4 minutes and 22 seconds.

When Aviana first arrived, she was terrified of the carwash. She would cry and I would tell her, “Honey, it’s not scary, look at all of the pretty colors, look at the beautiful flying water.”

After about two months she loved it. Before she could talk a smile would wash over her face and I would watch as her body would relax as we went through. Once able to talk, we would leave the gym and she would excitedly scream out “Mommy, go carwash.” She yelled this just about every day. I was so happy that she enjoyed this activity as much as I did.

The second the water would start to drip on the car, she would say, with a huge grin on her face, “Mommy, r-a-i-n-i-n-g!”

I finally ventured out to the carwash two days ago, I turned the music up, but this time was different. My face was as wet with tears as the windshield was with soapy water. My head was also spinning and swirling just like the brushes which clean the car exterior. No longer was the carwash a source of peace and serenity, but now was cause for sadness and solitude.

Sunday, August 2, 2009

Somewhat Inconsolable

Aviana has had a rough past couple of days. She is once again not tolerating her feeds or medication very well. They have started and stopped the feeds quite a few times lately. She is so very sad at times. She cries on and off much more and just seems uncomfortable. It breaks my heart to see her like this.

I have always heard new moms talk about their infants and how at times they do not know what is wrong. They talk of how all they could do was make sure they were changed, fed, didn't have a temperature and comfortable, then beyond that there was nothing much more they could do. They would feel awful as their babies cried. I have never had an infant or experienced anything of the sort. I was able to simply kiss anything which may have hurt and then all was good on the home front again. Shall we say spoiled?? Yes, that I was.

I am now getting my fair share of these feelings and can relate 110%. I feel helpless, like my hands are tied and there is nothing I can do to soothe her or take away the pain. These feelings are some of the worst I have ever felt in my life! We will continue to do all we can and hope these feeding problems are worked out soon. I am sure we have a long road ahead of not being able to easily comfort her. This is just one more adjustment we will get used to and with time, will be better.

Saturday, August 1, 2009

Our First Sight

These pictures are some of our absolute favorites. The agency showed them to us and asked, "Do you want to accept her?" Ummmm......YEAH!!

Work, Work, Work

Aviana has been tolerating her feeds really well, but the medication is still making her sick from time to time. She spit up her medications a few times yesterday. They had to re-administer them. They spaced them out throughout the day in order to avoid sickness.

Aviana has always loved to be held by anyone and everyone. Yesterday my mom held her for about an hour and Dave held her for close to two hours. All three of them loved every moment of this. A week ago, she would resist a little until we got comfortable. Now, the transition from her bed to our arms is much smoother.

After watching her yesterday, we realized she desperately needs to be held and we have not been doing it enough. Her entire body relaxed in both of their arms. If she started to cry, Dave would grab her up tight and close to his body and she would stop. Our new goal is to hold her much more. She will then be very relaxed and we will have a much better success rate at asking her to respond to commands. After all, she was in my lap when she responded to me asking her to lift her leg. We realized last night that we have been a little too easy on Aviana lately. We have felt like maybe we should not make her work so hard because of all of the "spitting up" issues. We feel we need to start working her harder now. She is getting too accustomed to lying there.

She is not going to like us at first, but that is fine with us as it is for her own good :o) We are no strangers to her not liking us at first for many things: sleep training, doing away with her bottle, potty training, brushing her teeth, talking, etc. If we hadn’t pushed and persisted in all of these areas, she would have not made any progress.

Starting today, we hope to be able to report more in the area of her following our commands. I even woke up this morning from a dream about her. She was on our bed and moving her legs. Her eyebrows would go into a V, because we were pushing her so hard and she in turn was trying so desperately!!! Guess what, in my dreams she was lifting her legs EVERY time I asked.....she can do this in real life, too. I have every confidence in the world!!