In Las Vegas

We are now in Las Vegas at the 1st North American Craniofacial Families Conference (a funny name when you think about it). We are having a great time and have learned a few things. Ella’s cranio-facial condition seems mild when compared to some of the other ones here however, she is one of the younger participants and has only had a “chance” to have 3 plastic surgeries. Some of these people have lost count how many surgeries they’ve had. We also learned, what we have come to realize over time, that usually these problems are never ultimately “fixed” only improved. Right off, we saw on one of the vendor tables a picture of a baby that looked like Ella did when she was born. This is a girl named Amber who is now 25. She has what Ella has (called by her “hemi hypertrophy gigantism”) and Dr. Bauer has been her doctor over the years. She’s not at the coference but people know her and she wrote an essay about herself in one of the newsletters. The big difference is that she has no neurological involvement. She’s in college and has been very successful in life. Good to know, but obviously Ella is faced with significant other challenges. In some ways, that makes dealing with the cranio-facial stuff easier b/c we are so focused on Ella’s development. Those people that only have cleft lip to deal with for example, can talk to you for hours about that. Ella’s craniofacial stuff at times seems like a minor side issue. This is not a large conference which makes it easy to get to know everyone. The sessions have been very good and we are looking forward to more today. We also had a great time at the dinner party last night. Ella and Netta rocked the night away!

This entry was posted on Tuesday, July 19th, 2005 at 5:37 pm and is filed under Ella's Log. You can follow any responses to this entry through the RSS 2.0 feed. Responses are currently closed, but you can trackback from your own site.

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