January 28, 2011

We saw Evie’s ENT last week to check on her ears and they are finally looking clear! We’re hoping this set of tubes last longer than the first set, but we fully expect to do the procedure at least once more this year because of Evie’s rapid scar tissue growth.

Because the fluid was finally out of her ears, we tried another hearing test. Unfortunately, the standard hearing test requires more quiet than Evie’s loud breathing could give us, so we’ll need to do a different type of test called a BAER or ABR test. We are still trying to get that scheduled, but there is really no rush. We know from observation that she can hear, it’s just a matter of how much.

Because of the scarring in her trachea, the ENT doesn’t feel comfortable trying out a speaking valve until she’s at least a year old. The speaking valve would allow Evie to breathe in through the trach, but then force her to breathe out through her mouth, allowing the air to pass by the vocal chords. He wants to give her the chance to grow more so she can hopefully get air around the scarring. We will hopefully be starting sign language with her soon so that she can communicate with us. We did sign language with our first daughter and she loved it! I’m looking forward to doing it again.

I have had some people ask me how eating is going for Evie and the the truth is, I haven’t updated on here because there really is nothing to update. She is still very uninterested in food and when she does actually get some food in her mouth, she doesn’t swallow it. Our first wasn’t very interested in solids until over a year, so we don’t feel rushed to push eating with Evie. Better to go slowly at her own pace, than to push too hard and worsen her oral aversions. We plan on keeping the gtube until after the majority of her surgeries are dome, so of she doesn’t eat until she’s 2 or 3, it’s perfectly fine.

Evie is on the brink of crawling! It could be any day now or it could be weeks from now. She scoots and rolls to get to things she wants and loves to be in the middle of things, especially the middle of things Big Sister is playing with! She likes to climb under and over things as best she can and enjoys walking while we hold onto her.

On Monday we will be seeing another cardiologist to get a second opinion on Evie’s heart. Please pray that if everything really is fine, that we will be able to accept his opinion, and finally relax and move on, but if there are problems, that 1) we will find them quickly, 2) they will not be serious, and 3) they will be correctable.

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One thought on “January 28, 2011

  1. Your posts are so well-written; I am always impressed – you really have a gift!

    Evie is such a beautiful little girl. I love reading your updates. Your journey has been encouraging and challenging to me in so many ways. I will be keeping you all in my prayers! 🙂

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