Saturday, February 28, 2009

"Lots of Progress!"

Hey All! Ava has been doing so good on adjusting to tube feeds. I am just surprised at how fast this is taking off. The goal was to get up to 550ml's peer 24 hours. Ava is up to 449ml's in a 24 hour period, give or take. I just got done figuring her numbers for the last 2 days. I'm very shocked. She has so much energy. So we have been doing 30-34 ml's during the day (with about 4 hours totally off everything) and we are up to 17 ml's at night. She can't tolerate a high setting at night.

So I'm thinking it won't be too long before we can get rid of the central line. We are on 12 hours of TPN. So yes she is getting plenty of calories. We have an appointment with the Dr. Shilyansky on Tuesday, but I think if she is doing well I will call and cancel. The only thing they will want to do is talk about her feeds and change her TPN hours. I am very cautious to when we remove the line because I want her tummy to be doing all the work. So to me to even keep the line for a week an only flush it and give her line Heperin would be a good way to go just to "be sure" we all good. I have a feeling she is going to do just fine.

We never had a problem with her getting into things when she wan't feeling good. Now she is all over the place and getting into trouble. The other day she got into my Curio cabinet. (It has a big glass window.) I told her she couldn't get into it and she looked me in the eyes and opened it as wide as she could. I slapped her hand but not that hard just to get her attention. Her eyes whelled up with tears. She looked at me like< "Mom you hurt me." I never had trouble disiplining the other two....her it is different. She's been through so much hurt in her little life's harder for me to be mean to her and "lay down the law."

She seems to feel sick in the morning at at night. This morning she threw up two times. The total volume was a little over an ounce both combined. We are pretty lucky.

Oh, oh, oh....yesterday she had a "formed" stool. I was so happy. Okay you all you might think I'm a bit looney but really this is the first normal stool I've seen out of her in about 5 months. So I was very thrilled. You should have seen THAT happy poop dance! (No I didn't take a picture of it for you. Surprised?)

I want to thank Nicole of Burlington for Ava's Valentine day gifts. You are so thoughtful. Also to the ladies at Harmony Bible church for the beautiful get well card. That was so nice of you to think of her. And I want to thank my friend Fer for editing Ava's "Sunshine" picture I took of her last week. I love the black and white edition. So precious! You can see them to the right of the screen.

As always here is a few pictures.

"Is Po sick, Ava?"

This is how Ava feel asleep a few nights ago. She was watching BArney and all of a sudden....out like a light!

"Mommy I'm THIS big!"

My silly girl.

Naptime today. "Ava how did you get this way?"

I loved this smile. I took this at about 8pm tonight.

In this picture you can see the bruise on her cheek where she feel playing with Emeline in the play room. She cried and cried. Oh and she has finally learned how to run. The bad news is she is falling a lot. Poor girl. She lands on her face most of the time. I guess it was something we all had to learn.

Thanks for stopping by and checking in on Ava. She is doing far better than I could have ever expected. Pray that she will continue to get better and better. Also that the throwing up will stop. I seem to think it is habit that when something doesn't feel right it must come back up. She has a really good gag refux which isn't helping our situtation now. God bless you all!



Liz and Shane said...

Ava you look adorable as usual. I am so happy you had a poop. Keep the poop coming. I hope you stop throwing up soon. Thanks for the update.

Lacey said...

She looks fantastic. I wouldn't pull the line either until your totally sure. It would be dumb to have to put another one in. Is she good with leaving her g-tube alone. I'm so paranoid Jax is going to pull his out that I have it all taped up.

Sky + Carla said...

So nice to see that Ava is doing better. I love all the pics!

~ Carla

blairspage said...

WOW... she looks SO MUCH happier!!! I'm so proud of her awesome progress! Does she still eat normal foods along with her tube feeds?

Praise the LORD!

Hugs - Tiff