by guest blogger, Linda Traute, parent of Madison Traute-Santos
One afternoon in Sept. of 2003 while walking to my office at Children’s Specialized Hospital, I came in contact with a medically fragile baby girl as she was receiving therapy. Madison weighed 1lb 2oz at birth. She had been admitted to Children’s to receive continued treatment and therapy for multiple medical issues and developmental delays due to her premature status. I learned that Madison was in need of a foster home that would be attentive to her medical needs.
During the months that followed my partner, Teresa, and I became actively involved in her care and well being. Getting Madison discharged from the hospital became our top priority. She was placed in our home on Dec. 19, 2003 after spending the first 11 months of her life hospitalized. At that time, Madison was still dependent on a gastronomy tube for her sole nourishment. She was unable to roll over, sit without assistance or bear weight on her arms or legs. Madison continued to receive therapies to assist in her development as well as receive regular pediatrician and specialists visits to maintain good health.
While Madison’s future medical prognosis is good, she still receives speech and occupational therapy and is under the care of a neurodevelopmental pediatrician for continued developmental delays and learning disabilities. If it weren’t for the medical care afforded to Madison this once medically-fragile baby girl would not have been able to grow and develop into a well adjusted healthy 7-year-old.
Recently, Teresa and I sat down with Madison the other evening to tell her that we will be taking a trip to Washington, D.C. to participate in the 2010 N.A.C.H. Family Advocacy Day and share her medical story. In true Madison fashion, she was ecstatic, clapping her hands and jumping around at the prospect of going to Barack Obama's house for a visit. We explained that while we would not be visiting with the President we would be meeting with some of his "friends". Apparently, we have a lot more explaining to do as I received an e-mail from Madison's teacher saying that Madison made an announcement in class about her upcoming trip to Washington, D.C. to see Barack Obama, who she loves, and be on the radio. We have our work cut out for us . . .
We're really looking forward to meeting you in a few weeks. Thanks for sharing Madison and your story with us.
Sharon (N.A.C.H. staff)
Posted by: Sharon Ladin | 05/13/2010 at 07:26 PM
Linda, Madison looks wonderful. What a great job u guys have done with her. Sharon Aiello LPN CSH
Posted by: sharon aiello | 05/13/2010 at 07:10 PM