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

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!

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!

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!

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.

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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