Monday, June 29, 2009

There Are Ups & There Are Downs

So, today didn't go as well as yesterday. When I arrived, the nurse (who worked with us all day yesterday) had just finished suctioning out her mouth. Aviana looked very still and was not responding to my touch. I asked if she has been moving and she said she had, when she was administering various treatments. I asked what kind of movements- good or bad, she showed a posturing demonstration. Posturing is NOT a good sign and is when Aviana turns her hands and wrists inward. I said OK so she is showing "bad movements" and she agreed.

I began to recap what the neurosurgeon had said about her purposeful movements and she had a look of disbelief on her face. She said every movement she has seen out of Aviana has been "NOT purposeful" and she had no idea why he would say such a thing. I gave her an example of one we were seeing yesterday and she confirmed that that one was purposeful. I definitely wanted to speak with neurosurgery again.

There is so much to this incident and I don't want to go into all the details, but the end result is water under the bridge. It does not change the outcome of what will happen with Aviana as that, I believe, is already written in the stars.

I spent the entire day with her trying to get her to move to no avail. At 1pm they reduced her sedation by 25% which I was hoping would increase her movements, but it has not. We just called Davis and Faith said she has not seen her move much at all and confirmed what the daytime nurse said, she too has not seen one purposeful movement. By Friday she will be off all sedation.

Since she has been maintaining her ICP's for so long, they are thinking of taking it out tomorrow and doing the MRI. By Friday, we will have a much clearer picture of what is going on.

We had been warned about the ups and downs. We have decided whether the news is good or bad we will now keep ourselves at an even keel. It does us no good to hang on their every word (good or bad), analyze, read into what is being said, etc. Whatever the outcome will be....will be.

I have to say, we are continuously SHOCKED by the outpouring of love and support from all of you. You are a beautiful constant while we are going through something unbelievably unstable. You are ALWAYS a bright spot in our day!! Again, we thank you so very much!

26 comments:

  1. Continued prayers and positive thoughts. Hugs to you all.

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  2. Oh Jen I am so sorry. I truly believe that there is hope for Aviana - a LOT of hope. She's in there fighting. My family would like to help in whatever way possible. Little Aviana has touched our hearts and we would like to help your family through the good days and the bad.

    P.S. - My daughter (Avi's preschool friend) sends a hug and a kiss. She said God is Avi's doctor and he is there in the hospital to make her better.

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  3. Please know we are sending many prayers every day and night for Aviana.
    Blessings, Rhonda

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  4. Continuing to hold you all close to my heart!!!!I am praying for all of you!!!!

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  5. I am so sorry, what a horrible accident. I hope the person that hit them accepts responsibilty.
    I belive in miracles, I have been given several including being cancer free for the last 7 years. I know in my heart that your daughter will come through this. Many hugs and prayers are coming your way.

    Heather Akers

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  6. I just want to say that it doesn't matter what this or that nurse says she believe Aviana is doing or not doing, it doesn't change the fact that she just is a fighter and no one can stop her, and you can't stop having hope. Keep the Faith for her, little ones are always known to just bounce back..little miracles they are. I have heard of so many cases of them in the worse case just bounce back. And I do believe so much of it comes from the Faith from the family, showing her you believe, and giving her strength to keep fighting out of this. I also believe in miracles, and I also think so far she has shown she is a miracle, so don't give up! Listen to what your heart tells you, not what the nurses say..give her a hug and tell her you love her, she will hear you.
    Bless you, stay strong!!(((Gentle Hugs)))

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  7. Jenn:
    I spoke to my mom today, it was probably one of the hardest things I have done in a while. She was very sad, but also she assured me that her prayers and thoughts will be with Aviana.
    I find myself privilegde for being part of Aviana's world, she has touched my heart in many ways and still continues to do so.
    Love always
    Susan

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  8. We are still praying for Aviana!

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  9. I'm still praying for Aviana. Have faith in the work the Lord is doing in your life. His plan will prevail in spite of what the nurses tell you! Have faith because your little one is a fighter and I'm [raying for her to have a complete healing!

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  10. I'm praying for your little girl. I do believe everything you said is right, not to hang on to every word the dr's say because anything IS possible for Aviana. Keep positive, talk to her all the time you are there, play music to her .. anything you can to let her know you are there ..
    I've know quite a few people who are have been in medically and non-med coma's and it takes tiem .. a lot of time and patience for them to get out of it and to even remotely do anything you would call purposefull. My friends daughter fell while riding her horse in competition .. she was in a coma for about 1 month .. then 1 month later home and walking but still re-learning talking etc .. it takes time. hang in there, be strong for your little girl and know that everthing good is possible for her!

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  11. just remain positive and keep up the faith, all will turn out well
    rob

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  12. I wanted to let you know we are also all thinking of you and your family. I canot imagine what you are going thru.
    Maybe Avian is just having a resting day after all she did yesterday, her brain is trying to heal itself. I hope she starts improving soon.

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  13. Oh Jen, I don't know what to say. Just please know that we are all praying. Praying for peace and comfort for you and your family. And strength.

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  14. Hi Jen, I can't imagine your turmoil right now so I am praying that God brings you peace and heals Miss Aviana as only He can! Please know you have many people praying for you and your family!

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  15. keep faith jen and dave. my mother was in a coma before she passed away 5 years ago. she also did alot of movement and the doctors would tell me they were not purposeful...but i knew they were. i could tell the difference. and a couple days later my mother woke up from her coma, and even the doctors were suprised. but i wasn't. i knew she was gonna wake up. i could tell. like you said before "science only goes so far". nobody knows aviana like the two of you, so always keep believeing in her. god only gives a person what they can handle, and he knows how truely strong aviana is. i believe aviana will pull through this. it's just gonna take some time. be patient and always keep faith. im always praying for you guys.

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  16. One step forward, two steps back...we continue to pray and keep hope strong. Please take care of yourselfs. God bless!!

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  17. Oh Gosh..You all just keep talking to her and letting her know you are there...She knows her mommy and daddy...Keep the faith...We will not give up on this little girl...She is a fighter...I can just feel it!! She will come through this!

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  18. Still here, still praying! You are so strong and I'm sure this is the hardest thing you have ever had to endure! She sounds like such a fighter and we are praying for her to keep up her strength and keep fighting. Praying for you and your hubby too.
    Hugs,

    Diana

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  19. Jen
    I have faith in God that Aviana will get better. I continue to pray for her as is my family who want to help in anyway we can. I have a picture of Avi on my screen saver from preschool of her smiling. This reminds me of my faith and that all things are possible through Christ who strength us. We just have to believe. Aviana and your family are in my prayers several times a day.

    Debby

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  20. Jen, You and Dave are not alone, your surrounded by friends and family that love and support you and your little angel. Just know that you are loved and in everyones prayers. Aviana is in good hands and no matter what, she feels you both by her side as she fights! We love you guys~

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  21. Dave & Jen,
    I am sorry to hear this but just keep the faith and know no matter what she is in GODS arms. He is holding her and loving her as well as we are. She is in my thoughts daily every minute and I'm raying for her constantly. Hang in there baby Avi we all love you. We've only met her twice I think but she touched my heart each time.
    Becci & Angela

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  22. I'm glad to hear that you are not hanging on every word. That's the right attitude. You've got to keep things in perspective. If there's a few things I've learned from my transplant friend's experience with the hospitals over the last year, it's the following:

    - much of medicine is educated guessing
    - the doctors disagree as much as they agree
    - there will always be good days and bad days...sometimes they are just that and they don't mean anything
    - you will be frustrated much of the time
    - you will wait and wait and wait and wait (and wait) for everything

    Take some time for yourself and time to let it all out. Then dust yourself off, wipe those tears and pull yourself back together. Stay strong and try not to let the bad days beat you down.

    Know that more people than you know are reading this blog and praying for your sweet pea!

    Love you guys!

    Janet (& Jeff)

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  23. I just found your blog from a Guatemalan Adoption Forum and I am heartbroken, to say the least. I am so sorry for what you and your sweet girl are going through. I will be praying for you!!!

    I also wanted to let you know that my second daughter from Guatemala has brain damage that was caused by epilepsy (something we didn't even know she had when she first came home). Her Pet Scan showed that 2/3 of her brain was damaged. The neurologist was less than hopeful and said that she might never walk or talk. (Almost one year ago) Our Tessie Bug is now 26 months old and can take a few steps on her own, says a few words and can sign more and all done. Those might not sound like an average 2 year old, but to us they are miracles!!!

    I will continue to pray for a miracle!

    Amy in MI

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  24. hang in there...you are being held up by all the love, as is dearest aviana.

    can you do something for yourself today?

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  25. "I will tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible to you."
    -Matthew 17:20

    I hope that today is looking up. I have a picture from preschool on my desktop to remind me to pray for your family through out the day. I'm not sure if you got my pictures at the end of class. I'd be glad to email them if you would like. My email is classicsredone@gmail.com.

    -Jillian

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  26. I think your approach is very wise, it is probably not easy to maintain, but yes, the outcome will be and is in God's hands. We are continuing to pray, you and your family are in our thoughts throughout the days and throughout the nites.

    warmth and support, jana

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