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Monday, October 24, 2011

A Voice From the Past

Hello fellow bloggers. It has been quite awhile since our last posting. Our apologies.

First and foremost, thank you for keeping us in your thoughts. I did not realize how much I missed you all. Life kept happening and quickly and hasn't given me a chance to come up for air.

Ciaran is doing well, for the most part. She is having surgery #10 on Wednesday. This will be her 5th detethering.

Ciaran is in her 3rd year of preschool and will be 5 in January.

I promise to get caught up with each of you in the near future. Please keep us in your prayers this week....

4 comments:

Jessica said...

I'm sorry to hear that Ciaran is having another surgery! I will keep her in my prayers this week. I can't believe these kids are growing up so fast! It's good to hear from you!

Courtney Beyer said...

Hi Wendy,

I stumbled upon your blog, and reading few of the entries has given me a very meaningful inside perspective about having a child affected by spina bifida. I am inspired by your courage and touched by the pictures of your family that I had to reach out. My name is Courtney Beyer, and I am the new Study Coordinator at VitaPath Genetics. Earlier this year, we successfully completed the first phase of our landmark study looking at the genetic factors contributing to spina bifida. In conjunction with our academic collaborators at Children’s Hospital Oakland Research Institute (CHORI), Stanford, UC Berkeley and UCSF, we recruited over 1,000 women and their child affected by spina bifida to participate.

Our first phase produced promising results but, we believe that it is appropriate for us to replicate this study in a second, independent group of mothers. We are beginning our second study in early January and are reaching out to more mothers to participate. In order to reach as many women as possible, I would very much appreciate if you could include news about the study in your blog. I also have banners and buttons if you would like to post something on your site. In addition it would be great to connect with you via facebook (search SB Genetics) and twitter @sbgenetics.

I would like to get in contact with you to share more information and answer any questions that you may have. Please email me at CBeyer@vpgenetics.com and visit www.sbgenetics.org. This website gives an in depth explanation of the study as well as a link if you are interested in enrolling. Thank you for taking the time to read my note and I am greatly looking forward to being in contact.

Warmest regards and happy holidays,

Courtney

John said...

Hey! We’re putting on an online live Q&A with Dr. Levitt from Cincinnati Children’s Hospital about fecal incontinence related to spina bifida, on February 22nd, 2012 at 7:00pm ET. If you’d like to participate in the event, you can RSVP here: http://www.eventbrite.com/event/2912706985. If you’re interested in hosting the event on your site or blog and would like some more info, please contact me, John Martin at john (at) partnershub.com. Thanks!

Jessica said...

I've missed you!
I thought I'd post here instead of on my blog to make sure you saw it. You asked if I regretted Gage's decompression. I can't say I really regret it, but I do question whether it was necessary. Gage was having a loss of function, and was regressing with his walking. When they did the MRI, they found that there wasn't any fluid movement through his foramen magnum, and they also found that cluster of cysts. They decompressed the chiari and the cysts in the same surgery. Well, the cysts came back, causing the same symptoms, and were probably the culprit all along. I wish now that we had gone to this other neuro in Memphis much earlier. He questioned what made them do the Chiari decompression, and when he did surgery on the returned cysts, he got it all and they didn't come back (at least we're pretty sure they didn't- it's been over a year with no new symptoms). So, I bet if he had done the surgery to begin with, he would have gotten all the cysts the 1st time, and left the Chiari alone. Of course, that's all speculation now. It may be that we would have gotten the cysts and he would have had another surgery to decompress anyway.