Friday, April 17, 2009

Ava’s Song!

Please stop by Songs of Love. It is an awesome organization.  Ava’s song was written, produced and sung by Thomas Jones. He did a super job of capturing Ava’s spirit. We are more than thrilled at how it turned out.

Ava got her ears checked here at home by one of the local school centers on Thursday. She passed both very quickly. That is probably the fifth hearing test she has had since birth. All her complications puts her at a great risk for hearing problems. So far so good. I’m worried about her eyes. She sits really close to the TV. This was a tall tail sign with Lexis that she needed glasses. We are hoping Ava just has to get it all in!

Last night and today Ava has been struggling at g-tube feeds. Her tummy ached all night and most of the day. I was barely about to get 400 ml’s in all night and half the day. She pulls at her tube wanting it off NOW. Her tummy growls really, really loud. I’m not sure what that means? So we are praying that tomorrow is better.  I called her dietician today and she encouraged me. Jean if you are reading, “Thank you for being so genuine. I really appreciate all you do for Ava. “ Perhaps this is Ava’s way of letting us all know that she is still in charge. It worries me…..this was the reason I was so hesitant of removing the line. I’m sure she will pick it up.

For those of you that can’t view the video here is a few new pictures from yesterday and today.



I didn’t notice until I viewed the pictures on my laptop that her shirt says, “Dreams Come True!” How true is that?



Thanks for stopping by! I hope you enjoyed the video. We feel pretty blessed to have three beautiful daughters.

~Terri and Brian

1 comment:

Bryan said...

What a beautiful video and song! As for her feeds etc. It sounds a lot like things we have gone through with Ally. Lately Ally has had really loud tummy rumblings and gassy poops. I think it's bacterial overgrowth. We go back on flagyl Sunday so I'm waiting to see if anything changes when we go back on tomorrow. And the tummy pain...she gets that also with BO and her tummy gets distended.

We also went through a time of pain that she felt like was from her GT and another wonderful mom from the tpn group helped me with that one. It was from too much acid in her tummy. We had to put her back on zantac and since have had to play around with different anacids and different frequencies to get it right. But the GT pain stopped immediately with the antacid. May be she is already on one but I thought I'd share my experiences.

Hope she gets relief soon,
Pam Winter