It has been a long haul for the StJean family. Born August 28th, 2007, a month premature, Sienna spent 2.5 weeks in the NICU. In the following weeks, she passed the newborn hearing sreening test. Up until 6 months old, we had no concerns. Then we noticed weak muscle tone and she fell off her growing chart, born in the 10-25 percentile she descended into below the 3rd percentile. We soon began seeing an early childhood interventionist.
From June 2008 until December 2008, Sienna was under investigation, why are these things happening to our little girl? In the summer of 2008, we started noticing her hearing loss. The first wakeup moment was when I returned from grocery shopping, I called her name and she did not respond. She is a mommy's girl, I knew if she had heard my voice, she would have turned without hesitation. By the time we were referred to an audiologist, an ENT, a test was done, an ABR was done... we finally were told on December 19th, 2008, the life-altering news, our little girl is deaf in both ears. Thankfully, impressions were taken on that following Monday. She was fitted with pink hearing aids on January 14th, 2009 when she began to hear.
The Glenrose Rehabilitation Hospital in Edmonton Alberta has played an instrumental part in taking care of our family. We began our visits in December 2008, over the Christmas holidays, someone from the hospital called us everyday, to see how we were doing. After extensive report analyzing, our Pediatrician at the Glenrose suspected Congenital Cytomegalovirus as the culprit for Sienna's health concerns. Just last week I received a call, they did a never before done, high-tech procedure, they checked her newborn blood spot for CMV. It came back positive. It's a relief to know that we finally have found the reason however CMV is a very complicated virus. If you would like more information about the virus, please click on the link to the Centre for Disease Control and Prevention.
Our journey has just begun. At 19 months, we know why, now we need to focus on having our little girl walk and of course having her hear with her two little ears she was born with.
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As I read this little story about Sienna, I couldn't help but tear up...I remember when she was about 6 months old and we were sitting in your Mom's livingroom. I can still picture you looking down at her with "Mommy Eyes" smiling at her. You had so many questions back then, but your love for her, tenacity for answers and eager spirit to learn will help Sienna go far. You, Kevin and Rylie have been given such a special gift...Sunshine Sienna
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Shelley
Our thoughts and prayers are with all of you. She is lucky to have both of you as parents.
ReplyDeletexox Christine
Our mutual friend Luc told my about Sienna's journey. My little Allison has also started her hearing journey. She was diagnosed with severe to profound loss in both ears in April 2008 and after hearing aids and numerous meetings with the Glenrose staff she was implanted January 12, 2009 and activated February 12, 2009.
ReplyDeletedarylrobins@hotmail.com