“It is a rare special bond when you find people who love your child as much as you do…”
Renee Seaver, Partial Trisomy 18/8p-, 2/25/2009, Medway, MA
Our daughter Renee was born at 36 weeks on 02/25/2009 by unscheduled C section due to uterine growth restriction and shortly after her birth she was found to have EA/TEF requiring surgery at 12 hours old to correct the connection between her stomach and esophagus. She was also found to have two VSD’s, one ASD and one PDA which required surgical repair at 5 weeks old. She had her Mickey button placed at 7 months old, prior to that she had been fed by NG tube, and she has been primarily G tube fed since then but she is able to take pureed food by mouth as long as it is thick enough. Renee was followed by EI in our home until she turned three then the respite center that she had been attending once a week for daycare offered to create a preschool program for her and she has been attending that program ever since and that is where she receives her OT/PT/ST/TVI services and just recently thanks to their hard work she started to crawl!
It has been one heck of a journey so far to get to where we are and despite the many trips to and extended stays at Children’s Hospital in Boston our girl finally seems to be thriving. We have met some wonderful medical professionals along the way and I am eternally grateful to the amazing surgeons who saved her life. Were it not for the dedication of Dr.’s Jennings and Bacha we would not have our girl with us and we never take that for granted.
We are also extremely blessed to have the opportunity for Renee to attend the Michael Carter Lisnow Respite center in Hopkington, MA. The staff there have quickly become part of our family and they care for our precious girl as if she were their own. I remember telling them after Renee had been attending the daycare program for a few months that I “finally felt like a real mom” to which I received some quizical looks. I explained that our home was now filled with little art projects just like the home of any “typical” two year old would be and that I have never thought I would have that experience but I did now thanks to them. It is a rare special bond when you find people who love your child as much as you do and I am overwhelmed with gratitude for them and the work they do.
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