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)

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/

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!!

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)

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!!

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)***

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.

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.

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!!