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Sunday, September 30, 2007


(Here's Caroline in her Sunday dress playing with her toys.)



(Here's Caroline - now sick of her Sunday dress!)


Caroline has had a few interesting appointments lately. We met again with the cranial surgeon about the surgery for her fused sutures (ridge in her forehead). He told us that, while he would like to perform the surgery soon, he has decided to postpone the surgery for a few more months after speaking with a pediatric anesthesiologist. The peds anest. said that her ASD (hole in heart) should really be corrected before her head surgery takes place; that specialist thinks that the surgery will be too much for her heart in its current condition. The cranial surgeon still wants to speak with Caro's cardiologist and a peds anesthesiologist who specializes in cardiology to confirm this opinion.

This update is good and bad news - we like to hear that the surgeon is willing to postpone the surgery to allow Caro to get stronger, but, to repair her heart, the cardiologist has told us that he will need to perform open-heart surgery, also very risky. I guess it will still be a few more weeks before we've made a decision on the surgery.

The surgeon did say that he thinks Caroline looks stronger than she did at her last appointment - he was very impressed with her improvement. I don't know if I've posted about her jaw before, but there was some discussion between the docs about operating on her jaw to bring it forward thus allowing her tongue to fall lower in her mouth and stopping it from blocking the airway. However, the surgeon thinks her jaw has now lowered and her tongue is coming forward enough to make that surgery unnecessary - good news!

We also met with Caroline's geneticist for the second time since she was born. Many of you know that the geneticist gave us very scary news at our first meeting with her; she told us that Caroline has a high risk of passing away within the first year of life because of how her translocation formed, mainly due to the increased risk of apnea, aspiration, or seizures. She did say that, if Caro makes it to her first bday, that will be a very good indicator of a longer life span.

So, with that background, we went into this appointment with trepidation but did receive good news. The geneticist said the risk is still there because she hasn't turned 1 yet, but the fact that she hasn't had any apnea episodes, aspiration, or seizure is a very positive sign. She thought Caroline looked better and stronger than at the last appt. and said B and I must be working a lot with her for her to have made that much progress. I know it's because all three of us have been blessed with resiliency, patience, hope, and faith.

4 comments:

  1. You and Bryce are exceptional parents and your dedication really shows in Caroline's progress. All three of you keep up the good work!

    (Love the picture of Caro tired of her dress :-)

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  2. That is all such great news! It's obvious reading this blog just how much the three of you work together to help Caroline progress so well and enjoy doing it at the same time!

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  3. I just love all the pic's. I find myself checking every day for new pics. It makes my day! Love you guys!

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  4. I couldn't agree more with all of these comments. Lots of prayers are ascending to heaven for your little family. All your (B, E, & C)hard work, faith and dedication (etc), family love and support and Heavenly help--it's inspiring and brings a smile to my heart! Lots of love coming your way from Olympia,WA!

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