Tuesday, August 25, 2009

One Down

By the time Friday rolled around, I was shocked and couldn’t stop making the same exact comment all day long, many times, to the same person, over and over! “I can’t believe Aviana has been here for one week already.” Aviana has now successfully completed a full week of therapy and is into her second.

I must say, she has a very busy schedule. She has occupational, speech and physical therapy in the morning. She is then usually wiped out from all of her hard work and takes a little snooze. She then wakes up (or has to be woken up) and does it all again in the afternoon. At first, she was quite resistant, but adapted fairly quickly. With each passing day, she is getting better and more comfortable in her surroundings.

I have been learning a lot and feel I am just about ready to roll her all around the mat on my own. I guess I should go get a mat though, that would help! I am looking forward to being her therapist. I wish you could see what I call her F-U eyes. This look is priceless. When they are making her do stuff she really doesn’t want to do, she shoots them the most telling eyes I have ever seen. I am sure I will be the victim of those penetrating, dagger eyes many a time!

Very exciting news…. They are going to try to start bolus feeding today. Right now Aviana is on a continuous drip feeding. She eats from 4pm until 8am and then is able to be unhooked for the rest of the day. We have all noticed that Avi has gained quite a few pounds over the last week! Bolus feeds are basically an amount of food all at once....like how a normal person eats. This feeding will go directly into her stomach tube rather than her intestine tube.

I had asked Kaiser when we would first be able to challenge her with a bolus feed and they said in about a month. I was so bummed when I heard that, it just seemed too long to wait. UCD is more than willing to try today and I could not be more thrilled by this fact. Please cross your fingers and hope that Aviana does not throw up and can tolerate the feeding. Life would be SO much easier if she is able to tolerate this feeding. We would be able to feed her like 4 meals a day and eventually she would be able to get that big ass tube converted into a much more stream lined Mickey button. Isn’t that completely appropriately named for Aviana :o)

Please keep us in your thoughts today; this would be a wonderful day if she does well with this new, slightly modified (for the better) way of eating!!! Oh by the way, Aviana's new thing is to lift her shirt and go at her feeding tube...she once again wants that sucker out!!


  1. LOVE to hear that she is ready for the feeding tube to come out.. Hopefully she handles the new feeding ok and get it out of there...

    Looking forward to hearing more of her 'eye' talk and how the thearpy is going...

  2. Jen,
    You guys are in my prayers today. That would be so great for the new feeding to work. I love how she speaks through her eyes. So smart and precious! That really does say alot, she is coming along step by step. Good luck!

  3. "F-U eyes"... That's the fighting spirit you have described from the beginning.

    May you continued to be surrounded with the love of the Lord, family, and friends.