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Ava holding her own.

Posted Oct 04 2009 11:12pm

If I could describe Ava in a few words I would use these…….warrior…..fighter……fire-cracker. But the one she is the most is enduring! She tries hard not to let her health stand in the way of her life. A prime example of this is after her nap this afternoon she came downstairs looking for me. I was in the basement, as soon as I opened the back door her eyes lit up like flashlights. There was a gorgeous Ava smile shining right at me. She ran to me with her arms open wide. (I tear up just remembering.)

To catch you up I will go back to Sunday afternoon. I talked to Iowa City and the intern told me that they did not want to give her any more antibiotics, as they didn’t think they were helping. I sat there shocked. I told her this was “unexceptable”. Of course they were helping her we just needed to switch them up. So I asked her to have Ava’s surgeon call me as I needed to speak to him. (Talk logic and reasoning into him was what I had to do.) So that afternoon he called. He told me that Ava’s episodes were becoming too close together and she was not getting better with antibiotics. I told him I wanted to give antibiotics a little more time. He did call her in another antibiotic for her. It is Neomycin. So we are doing that and Flagyl. So far her body is tolerating it well. She threw up a total of three times on Sunday, all projectile vomiting and very much stool. I only let her drink and we avoided food even though she was hungry I knew better.

So she did extremely well overnight. She slept the whole night through. I set her g tube to drain most of the night, except clamping it for the hour and a half for her antibiotics.  This morning she woke up happy and feeling much better. We took it easy and by 10 am she ate her first piece of toast. She did fine. Then it was nap time. She slept a good 3 hours. Then she ate 2 whole fried eggs. She is just still nauseous at times, placing her hand on her tummy and looking down at the ground with a deep concentration on her forehead.

She ate another egg for supper. She drinks fabulous so no worries about dehydration for Ava yet. Tonight she insinuated on taking the dog for a walk. (Remember the dog is blind and deaf. We stopped taking her on walks several years.) So Ava and I and Belle went around the block. Belle didn’t know what to think she just kept sniffing everything!

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As you can see her stomach is big but staying about the same. Tonight it is measuring 55 cm’s at the biggest part.

I have to send a “thank you” shout out to Nichole Rayburn. She sent a gift bag over for the girls. Ava LOVES the bubbles. You should have seen her eyes light up. AND she loved the wind-up butter fly bugs. It was so nice of you. Lex and Em got jump ropes and puzzles. They were pretty excited!

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And the pretty bracelets!

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So we are facing the fact that Ava is going to have to have surgery. Her body is not opening up enough and we can’t let her be in pain. As long as the antibiotics work we can buy a little time. We will do a swallow study test in a week or so to find the location of the obstruction. Then we will probably set up a time for the surgery. We know that it is important to have Ava well when going into surgery. I feel like this decision is out of my hands. We just can’t go on like this. I was hoping that God would heal her without another surgery unfortunately it is not turning out so easy. We know there is a huge risk for more scar adhesions but we must try.

Thanks for the prayers. I feel better today about the whole situation. I know that she is in God’s hands……she always has been.

I got this statue last spring, before Ava’s reherniation . It is one of my favorite things. I saw it and had to have it. It reminds me of God’s hands around Ava…………..always protecting her, even today!  It sits on our fireplace mantel and every time I see it I ask God to hold her closer than ever before!

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~Terri

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