Friday, July 31, 2009

Beautiful

When you adopt from Guatemala, you belong to an entire community of people who have also adopted. This community is amazing and comes together for various reasons. My dear friends Sarah & Peter came to visit Aviana the other night. They brought the most beautiful scrapbook as a gift.

Sarah invited many people to make one scrapbook page and send it to her. She then assembled the book and gave it to us. It was the most perfect gift and I will cherish it until the end of time. I cannot wait for the day when I can share this keepsake with Aviana!

Thank you to everyone who helped create this wonderful book!!http://lilyanasmom.blogspot.com/2009/07/aviana_29.html

Thursday, July 30, 2009

Missing My Girl....

M~I~C~K~E~Y M~O~U~S~E

I was finally able to meet Sgt. Merenda's mom, Deborah. We had a really great visit and got to know each other very well. My mom and her also got along amazingly well. Towards the end of the visit, she had told me her father, Sgt. Merenda's grandfather, was a HUGE fan of Mickey Mouse. She said he would frequently go to Disneyland and even Disney World. In fact, he had just been there a few months prior to his untimely passing.

The thought of this 6'6", ex-military man and Mickey Mouse brought a smile to me face! When she told me of his love for Mickey Mouse, I got goose bumps. Is it just simply a coincidence?? No, I don't think so. I don't believe there are any coincidences in life!

Tuesday, July 28, 2009

Clarification & Update

Clarification ~ After receiving a few e-mails and phone calls, I felt the need to go back and read what I wrote the other day. Oh my gosh, I was clear as mud!!

I wrote the following: "We are so excited to have Aviana home with us. While overall, all of the hospital staff has taken good care of her... we know we will take the best care of her. I am looking so forward to taking her outside into the sunshine. She loves being outside and I KNOW she will make improvements from simply having the sun on her face. I am so very excited to have her home in all of her familiar sights and smells, in her very own room and on her very own schedule that she knew and loved.

I cannot wait for the moment she is reunited with her partner in crime, Kama. Kama has been waiting an awfully long time to give her a good lick. I know our cat Zoe has missed her too, although she will never admit it!! I am most excited to just have her here with us again."

I did not mean she is home now; they were initially thinking she would maybe come home sometime this week. I am so sorry for the confusion; after I re-read my post....I could not believe I typed it in that manner. Can you believe I even proof read it a few times :o)

Update ~ Aviana's current feeding tube is called an NG tube and used to go down her throat and into her intestine. The reason the tube initially bypassed the stomach was because while in critical condition, they did not want her to throw up, this would cause the pressure in her head to increase. When she arrived at Kaiser, they wanted to take the tube out and put one of their own in. I let them know that it took a number of days to get the tube in the right spot at UCD. They then decided to just leave it be.

Once the ventilator came out, they pulled the feeding tube right along with it. They put a new one in which went through her nose and into her stomach. Once they started the feeds again she did alright. They then took her off of the main pain medication and started to give her drugs to prevent withdrawal. She then started to spit up her feeds and other medications. This has been a problem since Saturday. They thought they were going to be able to pull the NG tube and put in a G-tube, this tube looks like a button and will go on her stomach. All feeds and medications will go through this tube and will hopefully eliminate the problems she is currently having. They thought this tube would go in on Monday or Tuesday, they would train us on all of the equipment and then she would be home after that.

The GI department was so incredibly busy yesterday, they were not even able to come by and talk to us. I talked to them this morning and they want to run more tests on Aviana and start some new medications. She said the drugs which prevent withdrawal can slow down the digestive tract and so she needs to administer another drug to speed it up! She will be watching her over the next week and then on Tuesday of next week, they will put the G-tube in.

I was out getting a pillow case and the nurse who ordered all of our equipment said, "So, I guess you know they decided to send Aviana straight from here to UCD for a brief stay in rehab." I said no, I had not heard anything about that. Apparently, they have decided she would benefit from a brief two week stay. They will work on range of motion and also train me on all of the equipment. She will then come home. So at this point, we are currently looking at another 3 weeks!

As we know, they change things ALL OF THE TIME and Little Mrs. (reformed) Doesn't Like To Go With The Flow is getting better and better at it every day. I expect nothing and then am pleasantly surprised by all of the decisions which flow whichever way the wind blows! I always wanted to be more like this, but know it never would have happened naturally. I had to be forced into this way of thinking. Strangely, it has become the norm for me over the past 3 1/2 weeks. The reason I write 3 1/2 is because prior to that I was NOT ok with it and constantly fighting against it. Not any more :o) You can now call me Little Mrs. Go With The Flow!

Are you guys dizzy from the rollercoaster??

Me too!

Happy Birthday Mom!!

Today is my mom's birthday and while she has repeatedly said, "There's no reason to celebrate." and "It's just another day," I cannot and will not accept this!" I will celebrate my mom's birthday all day long as today is her day.

When I think of my mom so many wonderful things come to mind. I have always said....I had the best childhood ever. I am not sure there are too many people who can say this with such conviction. My mom is the most loving, caring, sweet mom a girl could have. I hold so many amazing memories to reflect back upon.

For years we have been as close as close can be. I look up to my mom in so many ways. I admire the person she is and most of all; I admire her as a parent. I feel she possesses all of the characteristics of the “perfect mom.” I feel blessed beyond belief to have been so lucky to have her. To me, she is warm, loving, considerate, compassionate and so much more. She is the kind who if I say, "I like your necklace," she will take it off immediately and give it to me!

Once Aviana came along, I had a whole new appreciation for the parent she is. She is the definition of the most “perfect grandparent” as well. She loves Aviana to the ends of the earth. I love watching them together. They are two peas in a pod. They have the same personality, same interests and share a bond like no other. What is funny is they are the spitting image of each other, too!

Mom, we all love you so very much and I want nothing more than for you to know how deeply you are loved. I know the circumstances are not ideal, but please enjoy your birthday as you deserve every bit of a wonderful day today!!

Sorry to make you cry mom, but these pictures are just too precious! The last picture is of Aviana waiting for her Nana & Papa! She loved being with them more than anything in the world!

Monday, July 27, 2009

A Day In The Life ~ Take 3

We have been busy beyond belief. I have not had time to write lately. Many things have changed since Aviana arrived in the Pediatrics Department. While in the PICU, Aviana had one nurse who was with her at all times. We always felt very comfortable with that set up.

When moved to the other department, things changed. One nurse watches over three children. Aviana is also completely off of all pain medications and is battling withdrawal symptoms with the help of some other drugs. She is much more alert and aware now and we cannot stand to think of her with her eyes opened and no one in the room. We have been spreading all visitors out to the best of our ability. This action is in an effort to have her surrounded by family and friends at all waking moments.

We have been at the hospital so much that all else is falling by the wayside. To be by her side is absolutely worth it though. Aviana has her eyes opened for much of the day and looks all over the place. Most waking moments, she is taking everything in. She yawns, stretches her limbs out and moves around in order to get herself comfortable. When one of her nurses from the PICU came to visit her last night, she was sleeping and had pulled her little legs up and had them crossed. Dave and I are NOT the type to be wishful thinkers. We take every move and carefully analyze whether it was coincidence or what we think is an actual movement or response.

The following are all movements which we believe to be actual and true:

We hold Aviana’s leg straight out and ask her to bend it. She responds accordingly most of the time.

I was holding Aviana and her legs were bent over the edge of the chair at the knees. I said “Come on Baby, lift your leg, lift your leg up honey!” She slowly and painstakingly lifted her leg ALL the way up and then lifted her other leg to meet it. It was, hands down, one of the most beautiful things I have ever seen.

As I said, she looks around all over the place and sometimes when we ask her to look at one or the other of us, she does.

Did you know Aviana was in speech therapy from December 2008 to June 15, 2009? She was completely caught up and finished with her program. Her therapist was a wonderful person named Kathy. She had explained the four different kinds of personality traits of children and pegged Aviana as “Own Agenda.” That stuck and the family would constantly and affectionately call her “Own Agenda Girl.” This trait is alive and well within her. Aviana does everything in her own time. I can’t tell you how many times she would learn to do some of the cutest things ever and if I tried to get her to show anyone.... she wouldn't. Then out of nowhere, in her time, she would decide to do whatever it may be.

In an effort to get her to do what was asked, we would constantly say “Oh Avi, you don’t know how to do it or I bet she doesn’t know how.” That approach NEVER worked once with her. She would never give in. As we sit and look at her.... we think she has the exact same attitude. We feel when the doctors come in and ask her to do things, she may not want to and doesn't for that matter.

We are happy with what she has done for us thus far! We are so excited to have Aviana soon coming home. While overall, all of the hospital staff has taken good care of her... we know we will take the best care of her. I am looking so forward to taking her outside into the sunshine. She loves being outside and I KNOW she will make improvements from simply having the sun on her face. I am so very excited we will have her home in all of her familiar sights and smells, in her very own room and on her very own schedule that she knew and loved.

I cannot wait for the moment she is reunited with her partner in crime, Kama. Kama has been waiting an awfully long time to give her a good lick. I know our cat Zoe has missed her too, although she would never admit it!! I am most excited to just have her here with us soon.

As many of you know, I have never in my life taken care of an infant. Aviana will be like having an infant. Her neck muscles are very weak. I will also be administering her feedings and medications through a tube in her stomach. I would have thought this would have scared the hell out of Dave and me. The fact is, we are not scared or worried, we are so happy to have the opportunity to take care of our little baby. We have been to hell and back through this experience and know we will be able to handle this just fine. How things have changed.

The first week this happened, we questioned and actually answered that we were NOT the type to have or care for a special needs child. Throughout life I have always found that I do NOT know myself like I think I do. This past realization is invigorating to me. Once again, I proved myself wrong. While we are aware of the fact that we are about to embark on the biggest challenge of our lifetime, we look deep into Aviana's eyes and can't help but think ~ Maybe we are BEST at caring for a child with severe special needs, maybe this is what we were MEANT to do, maybe we were CHOSEN for this mission!

I believe ALL of the above are true!

Sunday, July 26, 2009

You Amaze Us!

Please bear with me as I am typing this note from my phone! While my intention was only to show the shear magnitude of bills accumulated in one single day, we are shocked and amazed at the outpouring of love and support from many!

There are so many unknowns at this point and time. We are being forced to just simply go with the flow and hope all turns out OK financially, but most importantly with Aviana. As you well know by now, I am not great at "going with the flow," but am getting better with each passing minute. At this point and time, we are unsure what will happen with the driver's insurance. We do however have medical insurance which is taking care of most of this.

I have not had one free moment to tell all of you, we are excited to let you know, Aviana should be coming home this week. She is not yet at the point where she would benefit from rehab, but soon will be stable enough to be released from the hospital. That being said, we are finding there are a number of needed home medical devices which are NOT covered by insurance. We will be purchasing all of these devices this coming week.

A few weeks ago my aunt had received inquiries about an account. At that time my dad set one up. For all who may be interested, the account is at Wells Fargo Bank and is called "Aviana Hodder Special Fund" They said anyone can go into any of their banks and refer exactly to that account in order to make a donation. You can also refer to the account number:

7503830262.

We have felt a little uneasy about providing the account information due to all of the unknowns. This is the main reason why we have not given this information on the blog as of yet.

Please know how much we appreciate all of you! We are amazed on a daily basis by all of your support.

Friday, July 24, 2009

No Matter How You Slice It....

29 medical bills in ONE day is NOT a good thing!!!!

One Out of A Million

This is the exact scene Dave and I think about while talking to the doctors :o) Thank you to my cousin Erin for forwarding the link!

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Rock A Baby

Aviana always loved when I would hold her like a baby and sing... "Rock a Bye Baby." She would often run up to me and say, "Mommy, rock a baby." I could not resist and would rock her.

Once her ventilator was removed, they said I could hold her. I felt a wave of panic shoot through my body. In one split second a million thoughts came to mind... she just had such a huge morning of change, would she be really agitated? Will I affect the shunt placement? Will I smash her head in some way? Will I trip over wires (I am extremely clumsy) and drop her? Will I accidentally push on her staples? Will she like it? Will I be strong enough so she would feel comfortable and secure in my arms? I declined that day as I felt she should have time to adjust to all that had happened to her that morning.

I ended up having very strange dreams that night about the impending cuddle session. We were at home and she was just as she always was, but with wires all over her. I asked if she wanted me to pick her up and she said, "Yes." I carefully gathered her up and the wires started popping off. I was desperately trying to put them back on and still maintain a safe hold on her. I could not reach the wires or even begin to know where they went. No one was there and I felt freaked beyond belief. How's that for a dream?

I talked to my counselor about it and she said to proceed when I felt comfortable. Later at the hospital, I asked Dave if he wanted to hold her. The look of discomfort shot across his face. We had a good laugh with our friend Christie, Avi's beloved Kafi, (Kathy, her wonderful speech therapist) and our favorite new nurse Lisa. Lisa dug through some notes and determined the doctor had requested bed rest for Aviana.

We went to dinner and were planning on going home, when Dave had an overwhelming urge to go back to the hospital. When we arrived, our little baby was crying. We calmed her down and just loved on her. Lisa said the doctor had changed the order and we were now able to hold her. I decided it felt right in every way. Lisa gently set Aviana on my lap. This was one of the happiest moments of my entire life. She cried a little and Dave immediately started reading to her. She would stop crying every time he was reading and start when he would stop. He continued to read. For those that don't know Aviana~ books are her life!! Aviana did amazingly well and finally we put her back in the crib. Lisa gave Aviana a bath and then we tucked her in. She fell into a deep sleep almost immediately. Yesterday was by far the best day we have had with Aviana.

She is getting better with each passing day!

Soap In Hand

I went to my counseling appointment yesterday and explained in great detail the problem I am experiencing with going to places where Aviana was held in high regard, like a celebrity if you will! I told her I knew it was not good, I just need to go, I am in desperate need of a Costco fix, etc. I also explained how I used to go to the gym all the time!! While I never liked the entire process of going, I LOVED how I felt when I left and for that reason and many more I really need to get my butt back in there.

I asked, do I need to go full speed ahead and just do it??!! She said no, there are many different levels of success. She said I could pull into the parking lot, see how I feel, stay or leave based on those feelings at that moment. She advised I break it down into steps and leave at any given time. My biggest problem is talking to people about what happened and seeing the pure shock stretch across their faces. This expression is sure to send me into a downward spiral.

I should maybe just make some business cards with the blog address and just simply pass them out to whomever asks and carry on with my day :o) As I left the counseling appointment, I felt an enormous amount of strength....

Strong Jen: You can do it! Go to Costco. Costco has always been therapeutic for you. I will steer the car in that direction.

Weak Jen: Turn the car around. You don't need to do this now. You are not ready! Don't fool yourself! (I turned the car around and started toward...I don't know where)

Strong Jen: Get your ass back on track and go to Costco. (I turned again, drove back to Costco more determined than ever)

Weak Jen: I was talking to Dave on the phone, excited to be in the parking lot. He then says, "What are you going to do if you see Maria?" Maria is Aviana's favorite Snapple (sample) lady. Maria is in LOVE with Avi and will come from near and far with sample in hand when she spots her. What I am trying to say is Maria will personally hand deliver Avi samples...cart side service. Have you ever heard of such a thing? I sure hadn't. I immediately said "I'm out of here. I can't take that." I drove off, to where...I don't know. I drove about 2 miles and then my strong side took over again.

Strong Jen: I drove back, hopped out of the car, grabbed cart with authority, started to go in, chickened out as I approached the door, walked away, got back in the game, went and grabbed cart again, barreled through door at lightening speeds as I flashed the magic card. I was in, it was as great as it had always been, my eyes darting around in excitement. (you know, like Aviana's earlier that day) I was breezing through the aisles, putting items in the cart left and right, after all, who knew when I would ever be back again, right?!? I was passing sample people without even a glance. Dave called to see how I was doing...at that moment I saw Mickey Mouse chicken nuggets...sooo sad! I told Dave, "Maria is not here!!"

I carried on through, I was on the home stretch. I saw Maria out of the corner of my eye. I pushed my cart faster as I blew on past her. I got about 20 feet ahead and I had to turn around as I knew she had seen me. I went back and almost immediately, she had tears in her eyes (my mom had already let her know what happened) I started crying.... Maria and I just kept hugging!
I had a good cry and said goodbye.

I proceeded through with puffy, red eyes. I felt sad. I felt very lonely. I chose a line where the checker did not know Aviana (one of the longer lines in the entire place) I kept my head down, did not make any eye contact. I got out without further incident. Who would have ever known getting a bar of soap (or 20) could be so difficult!!

Thursday, July 23, 2009

Take My Breath Away

I thought Aviana looked beautiful yesterday. Today she took my breath away! She was so peaceful. She looked like a little flower. She was very sleepy, but when awake she would open her eyes really big at times. It was so nice to see my sweet little brown eyed girl.

I talked to her so much today, I must have told her at least one hundred times how much I love her and how proud of her I am. She must be very special because I gave her a really long foot massage. Normally, I don’t like getting or giving massages :o) She loved it! She would look at me, then her eyes would dart around in excitement and then they would once again return to me!

They will be moving her out of the PICU and into the regular Pediatrics Department tonight or tomorrow.

This girl is movin’ on up!!

Wednesday, July 22, 2009

Hurdler

Aviana has jumped over SO many hurdles in the past 36 days. We have seen her overcome more obstacles in the past 5 weeks than we have in our entire lives. She hops over them like a pro.

Wikipedia states,” There is a technique that is desirable to accomplish smooth hurdling action during a race. Many runners rely mainly on raw speed, but proper technique and well-planned steps leading up to and between each hurdle can allow an efficient hurdler to outrun faster opponents.” I truly believe that deep down, Aviana is a well trained hurdler.

She has maintained steady progress throughout this entire process. She carefully plans her next step. She knows she needs to heal in order to accomplish her next goal. If she just raced right through, she would be in danger of some huge setbacks.

Today was a wonderful day! This morning, Marc came in and removed the ventilator and bite block! Right off the bat, she did amazingly well. They did provide her with a cool mist mask. Within hours the doctor came back in and requested the mask be taken off so he could observe how she would react. He watched for about 3 minutes and then said she was good to go and no longer needed it. We could not believe it; our beautiful baby girl’s face was free of all tubes and tape. It brought happy tears to my eyes!!

Aviana was, of course, agitated by the new change, but I kept whispering to her, “This is all for the best baby.” She could now actually make some noise. She put out a hoarse little cry. I cannot begin to imagine how sore of a throat she must have. Poor little one. This type of thing is so much easier to take when you know you are moving in the right direction. Aviana has also had a temperature for a number of days and today it disappeared.

Every bit of today was a blessing. Her little body has come so far in such a short period of time. She has shown everyone how much of a fighter she is and will continue to be. She is an inspiration in every sense of the word. She is carefully leaping over new hurdles daily.

As I stand cheering from the sidelines, I think to myself, “I could not be any more proud of her!”

It's the Little Things....

that bring me to my knees. I started to type about our day today and quickly realized I was freezing cold. I usually solve this dilemma with a hot shower. I suspended my note and was about to get in the shower when I realized "Oh...no soap, that's strange Dave always refills it, he must have been in too much of a hurry." I went into the bathroom drawer and to my surprise there was none there either. I then proceeded down the hall and into the laundry room.

I knew there would be box upon box of soap there. If you know me, you are aware of the fact that I am addicted to Costco in every way, shape and form. If you open any given cabinet in my house, you will feel as though you are strolling down the aisles of that infamous warehouse.

It is not my fault, it has been genetically passed down from my parents. Costco is as ingrained in me as the color of my eyes. Same goes for EVERY member of my immediate and extended family. What I am trying to say is... Costco runs deep! I'm sorry, I got WAY off track, what I was trying to explain is, I opened the cabinet and instead of hundreds of boxes of soap, there was none, NOT ONE!! I plowed through the cabinet in disbelief. How could it be? I didn't understand! Long pause.... yes, I completely understood, actually it made perfect sense. I thought, "Just connect the dots Jen!" I was at Costco the day of Aviana's accident and have not been to my beloved palace since.

Certainly, not because I don't want to. Definitely, not because I don't need anything. The simple truth is I CANNOT bring myself to go. EVERYONE knows Aviana there. The person who greets you at the door, the sample (or as Aviana says "Snapple") people, the checkers and even the person who inspects your receipt upon leaving, they all know and LOVE Aviana. After we would check out, Aviana would say "Mommy, ceipt please!" This meant she wanted the receipt so she could hand it to the person at the door, they in turn, would draw her a cute little smiley face.

Anytime I was there without her, they would inquire about her. Case in point: the day of her accident, they were asking where she was! I have not felt the urge to cry at EVERY single stop through Costco just yet. I made the mistake of going to Blockbuster the other night and that alone cemented my decision to stay far from Costco.

Back to the soap.... I looked high and low for anything that would pass as soap, (didn't think of shampoo, that would have saved me some heartache) couldn't find anything so I thought for a moment, I could....

a) go back to the store which I just came from

b) be dirty until I go to the store again (convince Dave to do the same)

c) go to a neighbor and borrow some soap

d) grin and bear it and use Aviana's Johnson and Johnson Body Wash.

I chose (d) and I can safely say, that was the wrong choice. Tears were streaming down my face as I smelled my little girl. I couldn't stop. My mind wandered to all of the good times we would have in the shower. I would hold her to rinse her hair, she would fill her mouth with water and spit it all over me. She would giggle hysterically! I would do the same back to her, this would go on for quite some time. We would draw all kinds of things on the shower doors.

Tears are falling on my keyboard now as I type these words. Can't see... sorry I have to go for now.

Tuesday, July 21, 2009

Thank You!

A long time ago, I picked up a card which read, "It's the friends we meet along life's path...... who help us appreciate the journey!" I couldn't have said it any better.

We want to thank each and every person who takes the time to read this blog. Thank you so much for caring about our family. Above all, thank you for your continued love and support of Aviana.

We also wanted to thank you for all of your kind, comforting words and prayers. We feel truly blessed to know there are so many wonderful people along this difficult path!

Monday, July 20, 2009

Fifth Surgery....Done!

Today was Aviana's fifth and hopefully her final surgery. They determined she needed to have a VP shunt installed. This is a tube which runs internally from her ventricle in her brain down to her stomach. This tube will drain all of the fluid away from her head.

The surgery went perfectly and she was recently brought back to her room. We are now waiting for the anesthesia to wear off. We have another step in this crazy process under our belts. Another step in the right direction. Yeah :o)

Better Than Ever

A 24 hour transformation, night and day, happened overnight...all of the following statements apply to the way in which Aviana looked yesterday in comparison to Saturday night. It was an amazing transformation if I do say so myself. We were shocked when we walked through the door. She looked "like her" for the first time.

All of the fluid appeared as though it was drained from her head. We talked to another doctor extensively. He was a very, very nice doctor with incredible bedside manner. He chose his words very carefully. He did not make any promises while at the same time did not dash all hope. He is the type of doctor we gravitate toward. He began talking statistics and this is where I tend to kind of tune out because Aviana is Aviana and no one knows her like we do. She will show us what she can do, so I don't care about any stinkin' statistic.

So now, when we go over the numbers portion of every discussion, my mind is still on the conversation, but wanders a little. I have to keep it under control though because I am THAT person who thinks of funny things in inappropriate places (school, wedding, church, discussing ones brain injured child) and cannot stop myself from laughing.

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As he and Dave were running through the numbers this exact scene from Dumb and Dumber played in my head:

Lloyd: What do you think the chances are of a guy like you and a girl like me... ending up together?

Mary: Well, Lloyd, that's difficult to say. I mean, we don't really...

Lloyd: Hit me with it! Just give it to me straight! I came a long way just to see you, Mary. The least you can do is level with me. What are my chances?

Mary: Not good.

Lloyd: You mean, not good like one out of a hundred?

Mary: I'd say more like one out of a million.

[pause]

Lloyd: So you're telling me there's a chance... *YEAH!*

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On the way home, Dave and I were laughing out loud as we kept repeating in different ways something like "OK, Doc....so you're telling me she's got a chance.... *YEAH!!*" As my friend Jen always says, "laugh or you'll cry." I now live my life according to this phrase. I find it extremely useful! :o)

Anyway, the neurologist came by to see Aviana, (another of our favorite doctors- see we are navigating through and finding some very special people) he was also surprised by the look of her head. He was pushing on her scalp and was pleased with what he was feeling. Aviana was also moving around more. This was so nice to see. At UCD they were just giving her Tylenol around the clock and heavier pain medications as needed. Once she was transferred to Kaiser, she was given Tylenol and heavier pain medications around the clock due to her rough transition. I asked the doctor if we could back off on these since she is much calmer and more relaxed. He agreed and put the order in.

Hopefully now we will be able to start seeing what she can really do. We had my Mom, Gary, Jeff and Buffi over for dinner last night. It was the first time we had all gotten together for dinner since before the accident. This dinner was the perfect end to the perfect day. We all had a great time and realized just how much we needed some family interaction and good food!

Saturday, July 18, 2009

Lately

Aviana was quite shaken up by the transition from Davis to Kaiser. Rightfully so. She would get so angry when they would change her diaper or suction her mouth so I knew the transfer was going to be difficult for her. It brought me to tears thinking of all of the movement from one hospital to the next.

Sure enough, for the first two days she was miserable. She was so uncomfortable and it was written, more like sky written, all over her little face. It broke my heart to see her like that, but in the back of my mind I knew it was a good thing. It was great she was transferred from urgent care. It was great she was showing such strong emotions. It was just so very hard to watch her heart rate sky rocket. It seemed every time she would calm down, they would have to do something else for her care, which would raise it back up. Broke my heart. If she could talk, she would have been screaming "Please stop touching me!!"

The doctors at Kaiser (thus far) have been less than optimistic about Aviana's prognosis. They do not like what they are seeing on the scans and have made their voices known. One, in particular, sucker punched my parents while I was not there. He said Aviana had about a 1% chance of recovery. It would take an absolute miracle.

Thankfully, my aunt and cousin had showed up at the perfect time. They called me and I immediately left for the hospital. I joined them in the putting out fires department! I was suddenly catapulted back in time. To the time prior to the MRI results. This time was different though, this time I was armed with knowledge and experience.

It was apparent to all, they had not seen the MRI Davis had completed and reviewed extensively. Long story short, words were exchanged between that particular doctor and I. The next day the same thing happened with another doctor. I asked if he had reviewed the MRI, and that I thought it should have arrived by now. He pulled it up and surprise, surprise....he did not agree with the UCD doctors assessment of the scan. I say whatever with a capital W.

Amazing, two hospitals, SAME MRI, different opinions. In reality, it shouldn't be so shocking. I have said in the past, I carry my dear, new found friend Trina in my back pocket with me at all times. I flashed back to her written words and repeated them in my head.

So....once you see the MRI don't freak out. I know I did when we saw Audriana's. There was literally nothing left on her left hemisphere. Just vacant space where brain tissue had been surgically removed, and then dead tissue elsewhere. I was devastated when I saw that. But knowing what I know now, that wouldn't bug me so much anymore to see that. And I'll tell you why. The child's brain is amazing! Lost functions that were in the damaged areas can be taken on by other non-damaged areas. This is what happened to Audriana. It can happen for Avi, too. The doctor's do not want to give you false hope. They aren't there for that. They are there to tell you the facts as they know them. And with brain injuries, they are never the same. So I know it's hard, but please don't let them dash your hopes. We were told Audriana would never talk again. And that is her BEST recovery! So they didn't know. They didn't know! .... let's just see the MRI....and even then, remember what I told you, it will show structure but not function. Function can come later as the brain makes new connections. DO NOT FREAK OUT if the MRI looks awful. It's going to be hard not to, if you see a lot of damage. But when you start to, just remember my words about structure and function, okay? I remember Audriana's CT scan. Oh, it was awful. So much damage on that left hemisphere. And she had an MRI just 4 months ago, and it looked pretty bad as well. If she weren't standing there right in front of me, the doctor had said while viewing this MRI, I would think this brain belonged to someone in a vegetative state. She's amazing. Because just looking at all the damage you would never know that the other unhurt part of ther brain has taken on some of the functions. This is the difference between structure and function. This can happen for Aviana, too.

People throughout the course of time have been written off in so many ways. Terrible prognosis, not going to make it, not going to walk, not going to talk, the whole 9 yards. How many times throughout your own life have you been told, "You can't do it?" For me personally, those types of statements have always fueled the fire even more. Here we are again and I am not going to let anyone tell me no! Aviana is the EXACT same in spirit, but much more than myself. She has the most amazing will I have ever encountered.

Without words, I can hear her loud and clear..... "AVI DO IT!!" She is a survivor by nature, her entire being has always shown me she can conquer anything with flying colors. The force is STRONG with this one!! Oh my gosh, did I just reference Star Wars, the movies I have never really seen and continue to get made fun of for not knowing about! Well anyway, all I have to say is, "May the force be with you little one."

Friday, July 17, 2009

Reflection

Guatemala, two years ago today, we met our long awaited baby girl for the first time. She was 11 months old when her foster mother lovingly, happily and sadly handed her to us.

We had received pictures and updates for the prior 11 months leading up to this day. A mommy is all I ever wanted to be. I thought adoption and motherhood fit me like a glove. The day unfolded differently than I ever could have imagined! I thought I would grab her, eat her up and would not be able to get enough of her! Not so...I was a little scared to hold her at first. I did not want to scare the poor little one. The first time I held her was when the foster family left (in tears.)

I realized at that exact moment that I did not know this little girl at all. It kind of scared me. I knew her pictures, I knew of all of her updates, I knew who I thought she was, but the fact was clear...I did not know this little beauty.

We had a good few days in Guatemala. She was fine as long as we were not in the hotel room, the second we walked through the door she was in absolute tears. So, we took her everywhere we could think of, Antigua, the mall, restaurants, even the downstairs bar at one point. All three of us found solace within the walls of the bar!

We walked the hotel grounds like crazy. We knew every single nook and cranny (wow, I have never typed that word in my life) of our hotel. We knew every crack in the sidewalk, every different kind of Guatemala dwelling bird, every ...you catch my drift, right?

She became attached to us very quickly. By the time we were leaving Guatemala, she treated us as though we were her new family. She was laughing, smiling, giggling and doing everything in the cutest way I had ever seen. We arrived home and almost immediately it was apparent that I was not attached to her and this continued to be a looming problem.

I wondered on a daily basis what the hell was wrong with me. How can everyone else love her to pieces? How can she be so incredibly precious and I can't connect? Hadn't I had been waiting my entire life for this? What to do....well as I had been told, "Fake it, til you make it." I tried, I tried HARD to do this. I had always wanted to stay home with my little one and fortunately was able to.

So many times, I felt like it was agony being home. I have that personality type though to conquer whatever I set my mind to. If conquering is not possible, I definitely will go down kicking, screaming and clawing. I woke every morning and took care of Aviana until the time Dave got home from work. We would keep busy...going to the gym, running errands, we would come home and go over all of her books and toys, etc. I tried insanely hard to connect, to feel the bond I always envisioned.

I decided to continue researching this phenomenon. Researching, researching, researching is all I did. I joined a Post Adoption Depression group. I quickly realized that was not the place for me. I did not feel anywhere near the extreme feelings people on the list were feeling. In a short time of being a member, I realized this group was doing more harm than good, so I removed myself and pushed on.

I also reached out to many close friends and family, I called my adoption agency back, I even sought out counseling. The counselor told me, "I was being to hard on myself, lower my expectations and PUT THE BAT DOWN (she said I was beating myself up badly.)" I understood what she was saying, but never went back for another appointment. I knew deep down in my heart of hearts something was missing. I began to realize I was trying WAY too hard. I think for a long time I was, well I won't be able to say it as eloquently as Van Halen (Hagar-BIG difference) so here you have it, "We can push with all our might, but nothin's gonna come." These words repeated over and over in my head!

I kind of just loosened my grip of the entire situation and changes started occurring. Ever so slightly at first and then faster and faster. Yes, I had my set backs at times, but overall everything was improving at a more rapid rate. Minutes became days, days became weeks and weeks became months. I was so incredibly proud of how far I had come. I think I have mentioned in the past, we had hit our stride in the past months, things were looking bright.

Then the knife fell. My first natural thought was "Oh my gosh, why now, why when Aviana and I were doing so incredibly well?" My second, and almost immediate thought was how thankful and blessed I feel to have had the past months. If this happened last year, I wouldn't have had all of these wonderful moments under my belt. I wouldn't have been able to look back with total happiness.

I believe once again, everything happens for a reason! When I began to think of taking care of a special needs child, I questioned whether I had enough of a foundation with Aviana to get through. I thought, a house without a foundation has, but no other choice than to crumble. I have now realized that THIS is the foundation I have been so desperately searching for.

I could not begin to understand how much I loved this little munchkin all along. I had no concept of the depth of our connection. From the moment she woke up, our daily routines were completely intertwined. All the way until her little head rested comfortably on her pillow at night. She was just as much part of my everyday existence as I was of hers. She was taking care of me, just as much as I was taking care of her. I didn't realize this until I woke up without her.

I have been rocked to my core and all of the true, honest feelings are flowing out daily. I love this pint size cutie with all of my heart and will continue to follow her lead. She will let me know what is good for her in the beginning stages of her recovery and I will be right there for her. I often think, maybe we would NEVER have gotten to where we are now without this accident.

Everything happens for a reason, I will say it again. No matter what happens, I will find the good in this!! Trust me, I am usually not this optimistic of a person, the pessimism usually arises out of the little meaningless stuff. When faced with the big issues though, something else takes over.

Our two year anniversary with Aviana was to be completely different....or was it :-) When I talk to Aviana, well I say all kinds of things, but what I say every single time is, "Aviana please come back to me, things are going to be different around here, please, just give me the opportunity to show you!!"

Doesn't she look like she loves her new family??!! This was her WONDERFUL foster family. Hard to miss the two giants on the side :o) Poor little baby, this is what she looked like the entire time in the hotel room. I happen to think she is so cute when she cries though....is that sick?!!