Thursday, June 21, 2007

Could I ask for more?

Claira is doing beautifully! She's gaining weight ... quite a bit I might add. Her thighs are so chunky! I laugh when people comment on how little she is ... I have to think to myself "If only you saw her before." We've moved on to table foods. She truly doesn't like the consistency of baby foods. She loves the Gerber "Cheetos". They melt in her mouth and she begs for more! Her speech therapist comforted me today by telling me that I have to remove all normal thinking for now and remember that we're focusing on getting her to eat. The good nutrition habits will have to come later.
She drank from a cup for the first time today ... granted it was white grape juice with quite a bit of cereal added ... but nonetheless it was a cup. And she loved it! She looks great and acts like she feels great. We've had more problems with granulation tissue around her button and the surgeon recently said that some kids just are prone to it. She's had her third dose of silver nitrate. Hopefully this will get rid of it. If this doesn't work, they may have to remove the button and put the gastric tube back in for a time so that it can get more air. That is soooo not fun ... but who are we to complain at this point?!?

Sunday, June 3, 2007

Can I kiss her now?

That's what my nephew Dylan asked the other day when he saw Claira for the first time since her surgery. The last time he was around her was right after her first trip to the hospital. He had leaned into her car seat to kiss her and I ... well ... I sort of freaked. I was so obsessed with keeping her away from other people, especially children. Obviously he remembered that and very sweetly asked for permission before he got close. Gladly I was able to say "Yes ... you can kiss her now".
Friday she had another echo-cardiogram at Dr. Kimberling's office. The scar tissue on her aorta is looking better and is no longer a concern. We no longer have to give her Digoxin and Lasix (heart medications). He said that in 5 to 10 years from now we may have to fix her aorta, but until then she's doing great! What a relief!
She weighed 14 lbs and 5 ozs. She's gained so much weight that Tom and I feel she looks like a different baby. What an amazing year 2007 has been for us.
From here we will continue to work with speech therapy as we try to get her to eat. She is still taking baby food but very minimally ... maybe a tablespoon at a time. I've gone from buying stage 1 baby food and adding lots of cereal to thicken to trying stage 3 baby foods that have more flavor and variety. Maybe that will make a difference. We have a long while before we're able to think about removing the button. Oh well, one thing we've learned is that this girl can accomplish anything!

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Thank you David and Gina Brim for helping to express our gratitude for an amazing show of compassion and generosity.