Friday, September 27, 2013

All Star - Estie

 Having children is a commitment to care for them as they grow into independence. We don't know what the future holds for any of our children, whether they are biological or adopted, diagnosed with special needs or not. Lori shared  how Estie defied the doctors who gave a grim outlook on her life, to become an All Star and an inspiration. Read their story below:

"We adopted Estie with a unknown diagnosis. When she was 7 months old, her lungs collapsed. We were told by the doctors that she might have Spinal Muscular Atrophy (SMA), and that we should think of taking her off the ventilator at some point. We were told that she might live until she was 2, but with a ventilator she could possibly live until a teenager, however, what kind of quality of life would that be?

I quickly did my research on SMA and found there are 3 choices:
1) do nothing and let nature take its course
2) non-invasive ventilation (a mask instead of tracheostomy and very intensive therapy
3) tracheostomy with ventilation

Estie (middle) with sisters Sadie and Grace
I continued to read that this is the family's choice, because they are the ones who have to live with it. We had to face a team of doctors and tell them our decision, even though we were being opposed. If we had been a young family at that time, we most likely would have listened to the doctors and Estie would not be with us today. We stood our ground; we wanted her to have a tracheostomy. After a week a new doctor came on shift who agreed with us, and Estie received her tracheostomy. It was one of the hardest things for us to do, but yet one of the best, for it meant life.

She came home after 4 months in the hospital and has only had a few hospital stays since. After the initial poor prognosis, she proved the doctors wrong and performed in a dance recital at the age of 10 years. She is now 11 years old, attends school, plays tee-ball & basketball, does dance and loves to enter pageants. Oh yes she still does not have a diagnosis, but they have kind of figured by now it is not SMA.


Lori, I diagnose your daughter with All Starism. Thanks for sharing! ~ Cas

P.S. We'd love to hear other All Star stories. Please submit your story HERE. Thanks!

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