Wednesday, April 20, 2011

A Days Work

This one's for you Lisapooh ;o) I am sorry this has taken so long. I was trying to gather more video, new pictures, and more detailed information.

So here it is, this is what one day of Aviana's therapy looks like.....





We mask her from the second she wakes, until she goes to bed. It is every 4 minutes throughout the entire day. Yes, it is complete insanity ;o)




We complete an extensive reading program with her. We have 5 sets rotating daily, with one new set introduced each day, and one set taken away.




Sentences are 2 sets of 6 daily.




These are Aviana's books. We are to introduce one new just about every single day. This is a bad example of a book, they are usually much more educational than this :o)




See what I mean?? The next page says how stunning I think Aviana would look in one.




Every book has at least 2 pictures in them. These are extremely time consuming. My brother recently started helping me with these, and I appreciate it so much! Thank you Jimmy ;o)




These are called Bits of Intelligence, and each set has 10 cards within. We rotate 5 sets through, each 3 times daily. We take out one old set, and put in one new set each day. Once we ran out of the ones we could buy, we had to make them ourselves ;o( Thank you to my Aunt Rella and Uncle Roger for helping us to make these!!




This is Aviana's math program. She learns the quantities of the numeral symbol in dots. She is soon to be learning addition, subtraction, multiplication, division, and equations. I know it all sounds crazy, but I wouldn't waste my time if I didn't have some sort of proof she was learning. 

Dave thought these cards looked oddly familiar when we were learning this program. It turns out his mom used this exact program with him when he was a kid.  It's no wonder why he rocks in the math department!! Me...not so much...I never was fortunate enough to have dot cards ;o( Just kidding, even with the dot cards, I would have been hopeless!!  

Talk about a full circle moment!




We ask Aviana multiple questions a day. We hold her wrist over the board, and she guides the answer for us. If she is having trouble with patterning, etc. we will ask her questions on this board. It is nice to have her input, and really helps her if she is having a rough time.

She was doing unbelievably well with the board, but in the last month, she hasn't wanted to talk to us much.

It reminds me of a kinder version of a Ouija Board. "Do you want a cookie? Is Rainey irritating you today? Do you want us to read you a book? Do you want to go on a walk today? Are you mad at me? Do you despise therapy today? Do you know how much it is helping you?"

It is always shocking to get an unexpected answer. You think you know what she is thinking, and she is always there to let you know that you don't know everything :o)




As you have seen, Aviana spends a decent amount of time on the floor. This enables her to move freely, and practice crawling.




Today I made this video for Dave.  I made it because Rainey was looking for Aviana. She looked like she was saying, "I know I left her here, but where did she go?" I was about to send it to him at work, and I realized I should put it on here. Sorry about my lame voice again, I don't normally talk like that. I sound like I speak in "kiddie voice" all the time!




We complete a series that we refer to as patterning. We do 4 different things within each session.



I'm sorry I sound like such a dumb*** on this video :o)




I don't think I will ever get used to my voice on video!!!


Unlock ~ We don't have a video...sorry!






These videos sound so instructional because they were for a friend ;o)

Thank you Sue for helping with her head in these :o)




This was a video we made for a friend. We have converted our 3rd garage into a therapy room. This is where we house her gigantic inclined floor. She has not been doing this lately because her liver number has been high, and we are in the process of trying to figure out why.  This is part of her physical program, and when the liver is high, the physical must be lessened. Usually she works her way down this. The floor is 13 feet long, and she usually averages coming down in about one minute. 





There are actually many more positions that we do, but these give you a good idea.




This is our newest program. I don't know, call me weird, but it really hit home how crazy this program is when we moved a giant tank into our therapy room!!  This program provides a mixture of 80/20 carbon dioxide/oxygen through a mask to Aviana. It will help with her respiration. 

This tank came from L.A. and there is a whole back story that I am going to write about in a series I have graciously been asked to write for called Kindness Counts.

Because Aviana is immobile, we also have to complete six different kinds of massage. We rotate three different ones a day, and do them each five times. Most are in support of her hips. When a person is immobile, their hips unfortunately move in, and out of socket :o( The daily massages are....

Trapezium

Spinal

Medius Frog

Gluteus Medius

Gluteus Maximus

Shin



Here is an example of one of the massages. Please excuse the crying. Our poor, sweet girl doesn't really like this one:o(


This is a video of my mom feeding Aviana a cookie. I wanted to take the video to show you how she chews, but she was minding her manners for you. She's knows the filth we have shown in the past, and she wants you to know she's not really like that. You know, an underage driving, beer drinking, bird flipping girl.

Holy h*ll, maybe I do talk like that??!!! I'll work on it...how annoying. I have a theory though, I think it stems from always having one sided conversations. No one is speaking back to me. Only me, talking all.day.long, with no one talking back?? Maybe?




And then, there is always all of the cooking in our *down time*




Just when you think therapy is over, there it is again, in the form of overnight respiratory patterning. So, if my calculations are correct, her therapy lasts 24 hours a day

Lucky her. 

Lucky us.

Doesn't this all sound appealing?? I bet you wish you had a brain injured child that required 24 hours of therapy ;o)))))))

She's worth every minute though ;o)

As you can plainly see ~ it takes more than a village to run this program. We truly appreciate every single person that has ever helped us along this journey. I have a really difficult time asking for help, and have had to step way outside of my comfort zone. Thank you to everyone. I am in awe of your constant generosity, and help!!!


Roll the Credits, Please

*******

Outrageously Awesome Nurse for all around care, and compassion ~ Lesya

Monday Patterner ~ Summer

Tuesday Patterners ~ Mom & Gary

Wednesday Patterner ~ Jenny From the Block

Thursday Patterner ~ Roger & Rella

Friday Patterner ~ Michelle, and other fill in patterners

Saturday Patterner ~ Used to be Janet, or Jeff before we cancelled Saturdays :o)

Sunday Patterner ~ Cousin Sue

Fill In Patterners ~ 

All neighbors

Allison

Allison's friend ~ Pixie Jen

Joe

My Daddy

Anyone walking down the street, that includes the UPS person ;o)

Books ~ Jimmy

Builder of the giant Inclined Floor ~ Gary

Tank ~ The Russo's and Mike Toledo

Medullary Board, Third Garage Conversion ~ Joe

Person to help me stay sane (think shrink) ~ Maggy

Best Blog Supporters Ever ~ You

The Best Program Ever ~ The Institutes

Aviana's Specialty Doctors ~ The doctors

Bowen Therapy ~ Mr. Bowen Man

Praying People ~ People praying

Cry Dryers ~ Dave, Mom, Dad, Lesya, Maggy, Roger, Jen, Summer, Amy, Jeff, Kama, Rainey

Researcher ~ Uncle Roger

Comic Relief ~ Jen, Ellen, Jenny from the Block, Sophie & Cameo

The Best ~ supportive family and friends

Meticulous Excel Spreadsheet Maker ~ Dave

Guy Carrying a Box ~ The delivery person for all of her supplies

Soul Soothers ~ Oprah, Gary Allan, Butch Walker 

Inspiration ~ All who have walked before, beside, or after ;o)

PA or BUST ~ Roger, Rella, Mom, Gary, Ellen, and Dave Kennedy  

Endless Meal Maker ~ My Mom

Avi Watcher ~ My Mom, Gary, Roger, Rella, Jeri, and Jeff

Doggie Daycare ~ Jeff & Summer

Lifesaver ~ Sgt. Merenda

The Trooper ~ Aviana

Sunshine ~ Our Rainey Day

Best Partner in Crime Ever ~ Dave

Granter of My Most Important Prayer ~ God


23 comments:

  1. WOW! YOU are asesome! I so wish you lived close to me! I think you could teach me SOOOOO much! I feel like the worse mother on the planet and can't seem to figure out how to do anything right when it comes to Jeremiah. :( Did you make the therapy table? HOW did you make it?? I so want one for Jeremiah! Any advise you have to offer would be so welcome. He has severe brain injury, severe hypertonia(VERY HIGH TONE), severe spastic quad cp with severe brain loss. They use the SEVERE word alot. I could go on but you get the idea. I Love that little frogie boy soo much and feel like I am letting him down so much :(

    blessings,
    Tami
    PRAYING 4 A MIRACLE 4 JEREMIAH
    www.tillGodbringsthemhome.blogspot.com

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  2. Once again I'm speechless. I cannot imagine. Jen, you are amazing, unbelievable, wonder woman, super woman, warrior mom and every other superlative. Seeing it on paper is one thing, WATCHING it is something completely different. I'm so glad you posted the videos because it really shows the work and relentless LOVE you put in to your family.

    And I wish I could provide you with a fraction of comic relief as you give me!

    Love you Jen.

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  3. oh, and it's a proven fact that how we hear our voices on video is different than how other people hear them. Your voice isn't annoying, btw :) Woohoo!!! Now your life is perfect since you know your voice isn't what YOU hear, lol.

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  4. Holy Heck Batman....I don't even know where to begin!

    My heart leaped but then plunged when I heard Avianna crying! That's the first I've ever heard her sweet voice....but then...it was a cry.

    I immediately thought, "That's all Jen and Dave ever here right now is her cry."

    Your ability to care for her with such excellence speaks to the awe-inspiring depths of a parent's soul.

    You both take my breath away ... You are, as I sometimes say, "Jesus with Skin On" to your daughter right now! Just what He would be doing (everything) for her .... You are doing.

    What sacrificial love .... yet you would say, "It's worth it. No questions asked."

    Amazing. Amazing. Amazing.

    I think being parents brings the "AWE" of a person out ... it cannot also bring the "YUK" out too ... (ask me how I know..sigh.)...but once it is out...the "yuk" can be dealt with.

    Whereas "AWE" seems continuous to me.....

    And you all...continue to awe us all.

    Fight the Good Fight Jen ... You have it in you...

    Andrea

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  5. PS. I DESPISE the sound of my recorded voice. I swear it sounds like I am a 12 yr old talking to my first crush ..... I feel that pain sista :)

    (but you did sound stupid..silly..you sounded like a lovin' Mama...)

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  6. um. yeah. EDIT that last comment!

    You Did NOT sound stupid. (whoops!)

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  7. Fantastic post, Jen. I don't know how you manage to keep up with the daily grind without going nuts. You are amazing!

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  8. Wow that was intense.... I never would have imagined the depth of this each day. What a sweet girl, my heart breaks that she isn't out playing on her bike. You are both truly amazing, your dedication is second to none. I wish every day that this pays off. I have read about the institute after hearing about it through your blog, and I believe it will. Do you notice a lot of improvement in her physical movement already? She is clearly a very intelligent little girl.

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  9. Jen - you forgot to add Best Mommy Ever and Wonder Women at the end and that's YOU! You all amaze me and Avi - you are such a trooper!!

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  10. That was absolutely amazing just to see a tiny bit of your day and to see what some of the therapy is. Maya came into watch the video, she keeps saying she wishes she was like me and she could run and play. When you had the video of her eating she said "WOW!" did you see how she could open her mouth"

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  11. I can't imagine, Jen. That is a crazy amount of work. When you step back, though, it seems so worth it. Look at all that she has achieved. She has come so far compared to what the doctors said initially. She's chewing, she's wiggling her way around on the floor, she's getting a spoon in her mouth! If I can do anything, you know I'm here for you. Books, word cards, dog sitting, researching, anything. We (my family and I) love you guys so much.

    PS - You don't sound stupid. You sound like any mom does talking to their little girl. :) If you ever think you do, YouTube has an editing ability that will replace the sound with a song that you choose.

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  12. Thank you so much! I spent many, many Saturdays patterning when I was younger. I saw many tears shed on the incline plane too. It amazes me the things the Institutes have come up with. The gravity-free device...crazy! The family I used to work with had this huge see-saw thing that the little boy would go rolling down and then we'd flip it back and he'd go rolling back. The things parents would do to help heal their babies. I wish I lived closer. I'd love to be a patterner too!

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  13. All of these people responding to you have said everything in one way or another, so I shall leave you with one word:

    Incredible.

    You. Dave. Avi. Your friends and family. The therapy. These videos and pictures. All of it - incredible.

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  14. Whoa...what a post!!

    Back when we did these therapies on Audriana, I didn't have a computer and blogging wasn't even a word yet (1997)

    I love that you can share what you are doing on a daily basis through your blog! You have done a great job with this post, documenting everything you do with Avi in a day - it's all so familiar to me! Looking at Avi's masking photo, I had a flashback of the mini wash clothes that I always kept stuffed in Audriana's mask when she wasn't using it (you know during those sweet 4 minutes!) because I would need to wipe the mask out after each use, it would get wet inside from her breathing. You have much better pictures of the program than I have of our years doing ours.

    After seeing this post, not only am I amazed at all you do, but I'm amazed that I did all that, too. That might sound funny...but now, years later, I just can't believe we lived that life. It's all behind us now, but yet seeing this post brings it right back as if it were yesterday. I'm going to have Audriana look at this post. I know it will be very interesting to you and will bring back lots of memories.

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  15. Jen,
    Truly inspiring...amazing...remarkable...
    There are no words to express your day. Just looking in for a moment is so intense and unbelievable. I feel so deeply for you guys and Avi. It is so great to see what you all go through on a daily basis. It makes it more real. I am so glad that you do have a team that can help. That program is seriously sooo much, all encompassing, craziness. I really wonder how the creators of this program believe that parents can actually do this daily. It is just CRAZY! But you are doing it and doing it with grace and patience. Blows me away. HUGS to you.

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  16. Wow!
    and... you're credits are awesome!! It is amazing how poetic posts can be and I have to say, you're credits are beautiful.
    I am inspired...

    Hugs to you all :)

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  17. All I can say is WOW! Thank you, Thank you, Thank you, for sharing that post with all of us! I know that took some time and from the looks of it, you guys don't have much of that!! It was totally amazing to see those videos! You and Dave are such inspirational people..I mean really.....and Miss Avi...well, there are not words for what a trooper she really is...Ya'll keep going...The results will come...They already are! Hugs!!!!

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  18. You are seriously the most KICK ASS mama I have ever met or had the pleasure of knowing...you are a ROCK star!

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  19. WOW! Even though I am all too familiar with a lot of your program it is no less stunning and amazing. While watching and reading I was blown away by the amount of time and effort put in... all with such obvious care and love. You guys ALL rock and Avi is the living proof. She really is changing and all for the better. Love you guys. Keep it up!
    xo
    Fi's mama
    p.s. shhh... we don't pattern on Tues nights anymore!! :D "Family Night"

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  20. THANK YOU! I have often wondered just exactly what each day entailed.

    TEAM AVI is truly AMAZING

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