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!

11 comments:

  1. That is exciting and I am so happy to know that Aviana is doing great. What a relief I feel to hear this wonderful news and ever since my daughter saw her on Friday, she has told me that she is going to help her learn to play again. It was really funny to hear her say that. Keep up the good work and you will find that one day this all will only be a conversation in the past and will make your family grow stronger. I am happy for you and Dave.

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  2. I am so happy for all of you that Avi is going home! I'm sure that your family being together again will prove to be the best medicine.

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  3. Your strength, command and intricate knowledge of your daughter, her spirit, her personality, her ways, makes me smile big, wide and inside.

    praying :)

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  4. Jen-
    I'm a reporter at the Roseville Press Tribune. I wrote the story about your daughters accident last month and have been following your blog from day 1.
    Aviana has been in my thoughts non-stop since that day and I know that many of our readers would be interested in an update as to how the baby is doing.
    Would you be willing to do a follow up story about Aviana, her progress, coming home, medical bills and the special fund at wells fargo?
    Please contact me at meganw@goldcountrymedia.com if this is something you would be willing to do.

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  5. I'd love to help if you need it, even if it is just to sit by Avi's bed while you run errands or take a shower. Like Sgt. Merenda's daughter, Emma tells me that she wants to help Avi play again. She likes to tell random people about her friend, Aviana.

    I know that no parents would want it to happen this way, but this might give you the chance to bond with her in a way that you hadn't before. To hold her in your arms, feed her, to get lost in her eyes.

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  6. I am so glad that you are all going to be at home together, I can't imagine anything helping her be herself then getting to be at home with her parent's, pets, and get to go outside. hOw awesome that she seems to be responding to you and can follow commands (if she wants to). Take care and thanks for all the updates.
    Just curious how the accident happend as far as did the other driver just not see your parents, I can't imagine beign the person how hit another person and a child.

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  7. Jen and dave I have started and stopped my comment like three times today my words haven't seemed quite right to convey how happy I am that avi is coming home. I don't know you both incredibly well but I do know you are perfect for this!! Avi will thrive at home. Peter and i both cried while reading this post. You have been through so much we are here for you for whatever you need. Can not wait to stare into those beautiful brown eyes. See you soon. Sarah

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  8. Jen and Dave, First of all, I just really wanted you to know that I haven't been able to get my mind off of our visit, well, with you Jen. And to see Aviana, gives me more hope and an even closer bond for all of you. I cannot tell you how much, from my heart, that I know all of our family, first starting from Richard, our son, entering into this picture by doing all he could that horrible day to save little Aviana's life, to now, all of our family hoping and praying with all of our hearts for the best to come of this. Non of us giving up hope in a good outcome. But more so now, I am really seeing that as horrible as this has been for you, this experience has made you stronger people, not where some just fall apart and give up, allowing it to tear the family apart, it is bringing you closer, as in our family, all of our hard times has only brought us that much closer. That is worth everything.

    I read what Megan wrote, above, from the Press Tribune, and you really should do that, let your story go out more for more help. This is going to be a long road, and no one could handle it alone. Don't feel ashamed to ask for help. I know we sure wish we could do it all for you, but we can't but little bits here and there from us, then from someone else, and you add a lot of people and then you can manage.
    Stay strong, and give your mom a big hug for me too, tell her I sure have been thinking about her too..
    Bless your hearts and God bless you all ((Gentle hugs)) Deborah

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  9. Dear Aviana, Dave, Jen, Brenda and Gary,

    Thanks for the site address. Though I've been keeping in touch with Gary regarding Aviana, the blog helps all of us to keep up day by day.

    Avi's progress is amazing. Bless her little heart. Your family unity is wonderful to see and itis so important for Aviana. I'm so glad she's nestled into a nest where love surrounds her.

    Beth,me and our friends are praying for her and you are always on our minds. Little Aviana's angels are also busy. Matthew 10:18

    Give a little smuch from all of us in the Fresno area who love her.
    Craig

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  10. Dave and Jenn,

    We are so happy to hear that Aviana will be coming home. We have come to believe that God gives you what you can handle, I know whole heartly that you will be able to do whatever Aviana will need you to do. If Tom and I can step up when we were blessed with Layne, I know you and Dave can do this. If you need any help with anything Tom and I both know the in's and out's of the special needs community. It will be a challenge and stressful, but I know you both can handle this challenge. Please call if you need any help, we know the fight it can be to get services and places that need to be called, etc.

    When you are doubting yourselves, if your doing your best for your child, know that you are not alone. WE ALL DOUBT OURSELVES. Just keep in mind you know Aviana better than any professional that you will come into contact with now and in the future :o) We have many professionals over the years try to tell us what was best for Layne knowing it was not what we thought Layne needed. Stay strong and a team on the journey that is ahead of your family.

    You all are in our thoughts and prayers daily.

    The Redeagle's

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  11. Jenn & Dave,

    I was totally amazed tonight as I caught up on the blog since the 23rd... WOW! Amazing! Your little hurdler is quite the fighter!

    God does amazing things! The Lord surrounds us with His love and comfort. May He continue to bring you all peace as Aviana moves home and continues to face her medical challenges with a firey determination.

    "And the people said, 'Amen!'"

    Tina B.

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