Sunday, December 27, 2009

A Day in The Life~ Take 6

Aviana's current program takes just about every waking moment of her day. We still have approximately 3-4 other items to add in the upcoming months. Let me do the math, if the program is already taking just about every waking moment, this means we will need more waking moments in future months!

Aviana has always and continues to hold the title of "The Best Sleeper in Town." I suppose this means she will not get to sleep in to her hearts content :o(

This is a snapshot of what her program looks like as of today. I am so happy that one of us is an Excel Whiz. Thanks to Dave, we have a spreadsheet for everything!

We shine a flashlight in her eyes numerous times a day. This helps to strengthen her light reflex. We do 1 minute sessions of gnostic sensation 15 times daily. We take opposing items and alternate rubbing them on her skin. We do 1 minute sessions of vital sensation 10 times daily. We use toothpicks or ice all over her skin. Our goal is to awaken her senses. We do 3-5 second sessions of vital response 5 times daily. Yes, that is an air horn! We do 1 minute sessions of meaningful sounds (bells, whistles, etc) 15 times daily. Did you know you can teach your baby to read? I had no idea! We teach Aviana to read on a daily basis. We complete 5 categories of 10 words. We go through the entire set 2 times daily. The brain must have a continuous and adequate supply of oxygen to function properly and to repair itself. To accomplish this goal, we are masking Aviana. Through a "masking" session, Aviana is able to re-breath her own exhaled air which is high in carbon dioxide. The increased amounts of carbon dioxide in the blood causes blood vessels in the brain to dilate. This increases blood flow and oxygen delivery to the brain. We do 45 of these daily, on December 30th we will reach our goal of 55 a day. We send her down the inclined floor 10 times daily. She is on the floor for 2 minutes each session. This teaches her brain that if she moves her arms and legs, she will propel herself. This will build her motivation to move. We were fortunate enough to have someone loan us their floor to use while Gary is building Aviana's. Doesn't this floor look MONSTROUS?? Well, guess what...Aviana's will be 5 feet longer and 4 inches wider!!

If you know me, you know that I cannot stand having things out and around. I like everything to be just so and exactly in a perfect place. This floor is testing every single fiber of my being!!

I am actually morphing into a different person with each passing day. So this floor is only bothering me a little bit....OK maybe slightly more than a little bit, but that's all :o)

Saving the best for last.... As many of you know, Aviana's 24/7 diet of Nutren Junior has caused her many, many problems. We are in the process of transitioning her to REAL food! I could not be happier about this. We are slowly introducing real food back into her diet.

Due to Aviana's history of throwing up, they eliminated all "reflux' foods right off the bat. We started with vegetables, then fruits, proteins, fats and grains. Each day we blend up a small amount of one item and feed it to her through the tube. We make sure she is OK with that particular item and then put it on our list as a tolerable food. We give her four of each category. As of today, we are on the first day of grains. Luckily, she has been fine with every single food we have given her!

I can't even put into words how exciting it is to make food for her again. It is such a great feeling....even if it is fed through the tube! Once we are finished, we are going to call the Institute and they will let us know how to proceed. We will slowly be backing one meal of Nutren Jr. out and adding one full meal of whole food. We are going to continue in that fashion until she is fully transitioned to real, whole food again!! Woooooo Hoooooo!!!

To all of our wonderful family and friends: If it appears as though we have dropped off the face of the earth....above is the reason why :o) Just remember we love you all and are thinking of you, but are kind of tied to our home and most importantly to Aviana :o)


  1. Greetings again from Philadelphia, or "Fluffya" if you say it with a Philly accent. (I don't have one of those, since I grew up outside of Boston.) I was not sure whether to post here or on your slightly older "Philadelphia" post. It is a pretty city - glad to hear you appreciated it. Often, it has a bad wrap that it does not deserve. On the cheesesteak front, while admittedly I am not a meat eater, my husband, who was reading over my shoulder, said that should you and Dave ever be back, you should try "Pat's" - although he too said that all of them are a bit overrated. There is a lot more interesting food out here.
    As I wrote in the post where Dave described the program, "Wow" - and of course, good luck with that. It is an impressive routine. From this side of the US, wishing you and your family a 2010 filled with lots of progress and happiness.
    Continuing to root for the three of you,
    p.s. I can't stand anything out of place either. (And when I was faced with a big life event - cancer in my case, almost five years ago, knock on wood - I told myself that never again would I allow myself to be upset by the little things in life - like things out of place in the house, socks on the floor, newpapers in a mound vs a neat pile, etc. I must confess.... that lasted about three months. Clearly, I am not as good a person as I wish I were! )

  2. wow! you are sure busy! Cant believe you can keep all that stuff straight on a daily basis!
    Keep up the good work!

  3. Well, I will not be complaining of how busy I am, that's for sure! It does look like a ton of work, but I also can understand the reason for each task. I think the program should provide interns to come home with you and administer all that! If you want, my kids can come and take care of the loud noise part...they are really good at that!

  4. Jen, yet again you prove why you are so amazing and are the perfect mom to Aviana. That ramp would bug the hell out of me, LOL. I know how happy you are about having her have her food back! Yay! Your commitment to your precious girl is, well, it's like a mother bear protecting and taking care of her cub only times 100000. I love you and don't forget to TAKE SOME TIME FOR YOU!!!!! I would also hope that you and Dave have some alone time too.

  5. Hi, Im new to your blogs, and happened to come across it while on a friends facebook, I have sat here for hours and read from the newest all the way back to the beginning, laughing and crying along the way. What an inspiration you & your family are!!! I myself am the mother of 5 children and remember when my now 2 yr old,had heart surgery at 7 months old. I was beside myself for 14 days, never leaving the childrens PICU unless it was shift change.. Your daughter is such a fighter and you are as well! I will be keeping up with these blogs and will be praying for your dear sweet daughter and your family as well will be asking in the church this Sunday for all their prayers as well <3

  6. If you get really OCD and want to statistically analyze those sessions, I'm your girl. (Former reporting analyst married to a reporting analyst.) ;)

  7. Wow...Jen...I don't know how you keep it all straight!!! Even the thought of it all overwhelms me!!! We are continuing to pray about going there ourselves. I am hoping it all works out and we are able to go.

    Keep up your amazing work with that sweet girl and the results will be a huge payoff. Give her a kiss from us here in MI. Love on that girl...but remember to love on yourself, too!!!

    I cracked up at your Excel spreadsheets. My husband, too, is a wizard at Excel...I'm sure our counter will look like that someday!! As for things out of place...I used to care, but with 3 crazy kids and a not so neat hubby...I've just about given up!!!

    I will continue to pray for all of you and for the strength and endurance you need to get through each day!!!!

  8. Jen,
    You and your hubby are so strong! You amaze me with your wisdom and devotion. She is a blessed little girl to have you as her parents. You can have peace in knowing you are doing absolutely everything you can to get her on track. It is amazing to read your posts and wonder how it must feel to be you and if I would be as great as you are. Keep doing what you are doing, everyday, all day and know that we have your back and that we (family, friends, & we that only know you through your posts) will push you forward when times are hard. You are doing such an amazing job!

  9. Jen,
    Praise God for the love, support and dedication you give your beautiful daughter. You are one amazing Mommy! My prayers are with you and your family.

  10. Jen....I am soooooo excited for you guys! In starting this program you have taken the BEST step in getting your little girl better. My advice? Take lots of video. Because you know something... you'll be doing the same things over and over and over so many times and you'll wonder if it's "working" and you'll feel like giving up. But don't stop. Keep doing it. Keep going. Keep taking video of Aviana every other week or so. Then months from now, when you are feeling like you want to quit the program (and believe me, you will feel that way from time to time, it's normal) then look back at a video that is about two or three months back. It will inspire you to keep going when you see the improvements she has made.