Sunday, December 20, 2009

Aviana's Daily Program

Jen asked me to put together a post of what exactly we are doing with Aviana for the Institutes program because some people were curious of the details.

As Jen explained in some previous posts, the focus of the Institutes is sensory stimulation as a way to send information to the brain through the sensory pathways. As the brain is stimulated through use it will begin to grow new pathways.

For auditory stimulation we went out to Party City and bought a bunch of noise makers; whistles, bells, horns, clappers, etc. We do 1 minute of these meaningful sounds 15 times a day. Whenever Aviana hears a loud abrupt sound, she goes into this massive shock and takes about 30 seconds to come out of it. This is an exaggerated startle reflex. Because Aviana has an exaggerated startle reflex, we have to do vital auditory stimulation as well. 5 times a day we have to set off a air horn or slam two pans together to trigger this startle reflex which will then get better over time.

For tactile stimulation we are to rub her skin with contrasting materials such as a soft brush then a hard brush, sand paper then velvet. We do this also for 1 minute, 15 times a day. We also have to do vital tactile stimulation 10 times a day. This is done by putting ice on her skin or poking her skin with a toothpick (this one is the most difficult for us to do, but we just keep in mind that we are only making her better) for 1 minute per session. Luckily Aviana reacted perfectly at her evaluation to hot sensations so we do not need to do that as part of her program.

When they tested her light reflex she had a delayed pupil contraction to light. They have us stimulate her pupils with a flashlight for 1 minute 10 times a day. We are already seeing an improvement in her pupil reflex. They did say that the delayed reaction could be a result of the drugs she is on.

The other program we have is the physical program. Obviously one of the main goals of the Institutes is to get her walking again. Their philosophy is that there is a natural progression to walking. If you look at a baby as they develop they go through this progression. They begin with crawling on their belly, then they progress to creeping on all fours. Then they are able to stand, and then they are able to walk. You cannot just teach someone to walk when they can't even crawl. So we need to start by teaching her to crawl. They have us pattern her every day. We start with 30 seconds 2 times a day and will work up to 3 minutes 8 times a day. Patterning is when we put her face down on a padded table and with three people, one works the head, and one stands on each side of her working her arms and legs. You move her body in the pattern of crawling, moving her arms and legs back and forth and her head turning side to side. This patterns into her brain what it feels like to crawl. They compared this to when someone is in a coma and need a breathing machine to breath. If they are on the breathing machine for an extended amount of time and they remove the breathing machine, the person will breath on their own because you have patterned into their brain what it feels like to breath.

The second part of the physical part of the program is the inclined floor. This is basically a ramp with a Masonite platform which is very slick. The inclined floor has the ability to vary the angle of the floor. We set the angle of the inclined floor to where when we put her on it, friction is barely holding onto her. We put her on it face down, head first and when she just kicks one leg or moves one arm, she slides down the floor a little bit. She then kicks her other leg and she slides a little bit more. This programs into her brain that if she moves her arms and legs, she is able to propel herself across the floor.  We just need to get the natural progression to walking started. I want to thank Hector and Jennifer for donating their inclined floor to us. This saved me some time in the garage having to build our own. We are to put her on the inclined floor for 2 minutes 10 times a day.

Part of the physiology program is to get her off of the formula that she is on and to get her onto whole foods. We were both elated about this and couldn't get started fast enough. The formula she is on right now constantly makes her sick and she throw up. I'm too, sick of the smell of that formula both before it goes in and when it comes out. We are slowly introducing her to whole foods, one type at a time. We blend them up with a Vita-mix and feed her through her tube. She really liked the apples. We give her a little taste in her mouth as we are feeding her. They are big on giving her everything organic so she doesn't ingest any preservatives, pesticides or toxins. This is going to increase our grocery bill but I am sure it will be worth every penny. Since we are buying organic for Aviana we will probably just buy organic for us as well which is probably better for us anyways.

There is much more to this program and as you can tell from the length of this post the program is pretty involved and time consuming. They start you off very slow and month by month increase what we are to do with her. We did not feel it was enough upon returning home, so we are already into what we are supposed to be doing in the third month. We are currently only doing about half of the total program and it takes us about 4-5 hours. We are expecting it to take us about 8-10 hours a day once we are doing everything. It doesn't seem like a lot because each thing takes 1 minute to complete but there is such a large quantity of things to do it takes so long to get them all done. This definitely isn't an easy fix for her.

The Institutes is pretty adamant about doing the program 7 days a week 365 days a year. The key is duration, intensity, and frequency. The more we put into this, the more we will get out. We want to see progress soon which will motivate us to work hard at this. Seeing progress from Aviana will further motivate us to continue day in and day out. All the hard work will be worth it in the end.


  1. Thank you so much for this post! You are such incredible parents!!! We continue to pray about taking our daughter to the Institute...we just aren't sure how it would all work and how we would pay for it. I can't wait to see the progress Aviana makes. The three of you make an amazing team!!!

  2. Oh Jen. Again, I'm amazed at everything you do for your precious baby girl. I can imagine how exhausting it is. In a way, it's kind of like chemo. Trina was taking her chemo twice a day but the effects last 24 hours a day. It's never ending but the outcome is well worth it. I commend you on your dedication and doing whatever you can for you child. That's why Trina is doing what she does too. Everything we do is for our kids. I love you and in case I don't talk to you before, MERRY CHRISTMAS!!!!!

  3. WOW! Well its been a while since I posted anything but I can reassure you that Aviana is on my mind alot. From what this routine sounds like is what we would do in order to get terrorist to crack and spill the, all you need to do now is waterboard her and you guys will be official interrogators. Just trying to make light of a hard situation. You guys have been amazingly strong, if no one has told you lately its alot to ask of two people to perform these duties each day. Well give everyone a bog hello from me and I wish you guys a very Merry Christmas.

  4. Thanks for posting. What an intense but wonderful therapy. I can't wait to read about the improvements she will be making.

    Have a blessed Christmas!

  5. i rarely post as well but think about you and aviana every day. if the power of thought and prayer works, aviana is going to soar in her recovery with all of us out here cheering you guys on. i wish there was more i could do for you all...

    with love,
    samantha (another guate

  6. Sgt. Merenda is right. Wow. Best of luck with all of that. In the past, I have noticed signs around town for families asking for volunteers to assist with once weekly shifts for two hours or so with similar types of therapies for children with autism, and when I was growing up my mother assisted, as a volunteer, in some type of regular therapy for a child. I suspect that people responding to these requests might be retirees, or students, or simply people who want to help. Although I'd imagine there is a strong desire to want to do all of this on your own, and there is family to help too, I'd offer the completely unsolicited advice that after you have the routine down, you might want to seek some type of regular rotating assistance with this, just to keep your own minds at their best and not wearied by the repetition-----or if nothing else simply so you can get other things done for yourselves and Aviana without having to burn the candles at both end. As everyone has pointed out already, you dedication and strength is noteworthy, and clearly will be the source, along with her own determination, for Aviana's success with this.
    Sincerely, Ellen

  7. Dave & Jen,
    I have been following your blog for quite a while and have finally decided to comment. I think you are the most amazing parents! I am in awe of your stregnth and dedication! I just know that you will see a huge improvement in your beautiful daughter under this program, and can't wait to see a post about her "thank you" smile! Wishing you a wonderful Christmas season and a sparkling New Year!
    Lisa :)

  8. Hello!

    I have posted several times here and have followed your difficult journey.

    We, too, have a special needs child. He is cleft-affected but, now, seems to be the least of his issues.

    He is 7 now (adopted from China at age 2). He has, apparently, received some trauma to the brain at some point whether during birth or after.

    Some of tried to label his with "apraxia" or "autism". He is neither.

    Though he presents himself similar to these labels.

    The ONLY thing that has helped Tye heal is NEUROFEEDBACK therapy.

    When I first looked into it I thought "no way! it's a snake oil gimic" but we were so desperate to help him progress we gave it a shot.

    UNBELIEVABLE increases in verbalization, sensory resolutions, and enhanced emotional stability.

    Our provider is but maybe there is a provider close to you?

    The therapy REMAPS the brain versus medication that just provides a band-aid.

    The therapy seems similar to your program but it is more concise, and you can test now and then to demonstrate progress.

    All the best always...


  9. One more thought!

    Surely Aviana is dealing with Post Traumatic Stress symptoms.

    Could you inquire as to a medication that will mask these symptoms enabling her brain therapy to be more effective?

    Tye has Post Traumtic Stress symptoms which, in a child, presents itself in exaggerated startle reflexes, fear over "nothing", talking less than before, ineffective sleep, and severe anxiety when things around him change...

    Just another thought...


  10. Hi Jen and Dave-
    Just wanted to let you know how inspiring your blog is. I am feeling a little overwhelmed by the whole program and feel empowered reading your words, knowing how incredibly challenging the program is and seeing you two going for it like rock stars. Please keep in touch. Big squeeze from us to Aviana.
    Sophie (Fiona's mama)

  11. Wow!
    What an absolutely intense program!
    Kudos to you two for taking this on and going for it! Sounds like you have a lot of support behind you and it's great that Aviana has you guys in her corner!
    Hope all of you have a very Merry Christmas!

  12. That is a lot! Look into We get a box delivered every week with fresh produce. I've priced it out at the store, and we end up getting a better deal and fresher produce with the deliveries. You can pick and choose what you like and don't like and there's no contract like a normal CSA.

  13. Haven't checked into your site since Thanksgiving and WOW you all have been busy. My heart warms when I read your posts. God Bless you all! Love to you little Avi :)

  14. Thank you for sharing the details with us. I am amazed at how much we take for granted on how our brain and body operates. I'm so thankful you have been given the tools to help Aviana and her brain to restimulate. It seems so logical when you lay it out there for us. So much time and dedication it will take but I know the progress will make you excited to keep on going. Just hearing how she loved the taste of apples made me cry happy tears. I guess she needs motivation, too and the sweet tastes and feels of things are a good way to start. Much love and encouragement coming your way.

    Dave and Jen and Aviana - you are amazing people!

  15. Jen this post just brings me back....
    Have you started masking yet? I remember having to mask Audriana every 5 minutes of the day as part of her program.
    Every. Five. Minutes. Wow.
    To think back to it, I really can't believe we did the Institutes program for 3 years. It's definitely the hardest thing we have ever done.
    But to look at her today, I am so very grateful that we stuck it out.
    Talk about intense and exhausting. But it feels so, so good, doesn't it? Knowing that not one minute of the day is being wasted, that every minute of the day you are helping to heal her brain. It's just so overwhelming but yet so empowering. (and I say every minute of the day, because eventually that is what it will be. Once you are into a full masking program and she's sleeping with the respiratory machine then it will literally be every minute of the day!) Aviana is very lucky to have parents like you who will actually take this route in therapy. It's definitely the hardest therapy to do, as it demands all of your time everyday. I wish we lived closer to you -- I would be a patterner volunteer!

  16. Love your recent posts and updates. Yes, it is intense but all so worth it. I too was MOST excited about changing our diets and our new Vita that thing! So happy to hear the ramp is working out for you while you build your new monster ramp :)!! All our best to you both!