Thursday, June 10, 2010

Cliff Notes Version

Today is the first day that I woke up, blinked a few times and thought, "Hmmm....I think my bearings are finally somewhat in place!"

Let's see, how do I condense a full weeks worth of information into a short, informative blog note?? Bullet Points? Short Paragraphs? Some of both...yes!

Flight~ because Aviana is no longer sick; we had a perfect flight there and back. This was a complete night and day experience from last time!

Pennsylvania~ again, hands down, one of the most beautiful places on earth. If it weren't for all of my family and friends in California, coupled with the humidity in PA, I'd be there!!

Day 1~ they reviewed our current program and re-evaluated Aviana. They found that in regard to diet and weight loss, she did amazingly well! They were really happy with how far she had come in such a short period of time. They also realized she had not made too much progress within the physical program. They are thinking now that her diet is in good order, her physical program will follow.

Shocker~ they asked what the most difficult part of our program was and I said the inclined floors. Our advocate said, "Then we will get her moving! If you were doing 20 floors before, we will do 60 now!"

I just about had a heart attack in my chair. I asked for clarification many times. The answer remained the same.....60 floors. I know the staff has to listen to us whine a lot, so I try not to, but in this situation I had to say my piece, "Leia, are you serious?? Do you want us to go to bed at 4am and get up at 6??!" She was serious as the heart attack I felt coming on.

This little bit of information cast a haze over my entire week. It loomed like a big, black cloud.

Day 2 & 3~ we were in lectures for both days. They have so many different programs to help our children. It actually makes your head spin, if you let it. We learned so much, and realized just how many aces they have up their sleeves!

Day 4 & 5~ we first took Avi to an eye appointment. They found that while her eyes are very healthy and move perfectly together, she is using her left eye majority of the time to see. He said she is 1000 in the left eye and 2000 in the right eye. We also met with every imaginable person at The Institute to go over the new program. Some things stayed the same, some things changed.

Shock Relief~ as we were learning the new program, the big, fat, black cloud above began to generate thunder and lightning. The storm activity was sending shock waves through my entire being. Internally, my attitude began to short circuit. All I could think was, all this, and 60 floors!!!

In the 11th hour, we met with our advocate again. She said she got a little excited on Monday and after reviewing everything on Aviana, with everyone....they decided to reduce the floors from 60 to 15. Less than what we were doing previously!!!

Haven't I learned anything from myself? I have become so much better about unnecessary worry. They got me...I worried all week and cursed everyone out in my head....all for nothing!

Things that are the same~



Reading Program

Things that are different~

Instead of 2 types of patterning, we are now doing 4 different types.

Instead of 24 minutes of deep tactile massage, we are now doing 40 minutes.

This massage is to the bone, and helps her hips.

We do not have to do anymore gnostic (sandpaper, brushes, etc) WoooooHoooo

Luckily, we also don't have to sound the airhorn throughout the day!

They added respiratory patterning also. 2 hours a day. Pictures will follow, this is too hard to explain. 

Medullary Reflex- think "log rolling" Avi down a 6 foot board! She really enjoys this one! Pictures of this one to follow too :o)

Feeding~ They want us to ramp up on her feedings by mouth. Their goal is to get her tube OUT!

I fed her about 75% of her food by mouth on Monday, she was way exhausted on Tuesday. I went a little overboard! She was really enjoying it I just went with it. It ended up being too much though, so I need to gradually ramp her up :o)

Overall, it was a great trip. We are once again armed and dangerous!


  1. WOW! My head is hurting just thinking of everything you learned over the week. You are an amazing mama! Avi is so lucky to have you!

  2. No feeding tube no feeding tube no feeding tube is what I read!!!!! Lily still remembers she was promised ice cream when Avi is better. I am hoping homemade organic frozen treat can be on the menu soon. Lily had a dream the other day. She wasn't real clear about the happenings in her dream but the gist of it was her and Avi were running from something and it was fun. It made me smile I hope it makes you smile too.

  3. Yay Avi! I'm glad that they enjoyed seeing that the glow in her face is back. She really does look so much more healthy. Looks like she's feeling better, too.

    I know it is tough. Incredibly tough. You know what though? You are both awesome parents, and you've got an awesome family around you. Avi couldn't have found a better family to love her. My heart swells with happiness (and my eyes with tears) every time I read that she's making progress.

  4. You, Dave and Avi are awesome with tremendous fighting spirits!