One of the first challenges came from an routine scoliosis series test that the Physiatrist ordered to check the curvation in Jordan's back and to rule out scoliosis. The last test we had was done almost two years ago and it was time for a recheck. Low and behold the results came back that not only was there evidence of scoliosis, but that the results were at near 0 degrees and had jumped to a 27 degree curvation! I could have fell out! We scheduled Jordan for a series of test to rule how severe the scoliosis was.
Thanks be to God, the same day we went to Dr. Robert Cristafaro who had performed bilateral-lengthening of the tendons in 2001 which is a procedure that bilaterally cuts across the tendons to loosen tight muscles in persons with cerebral palsy. Incisions are made across the hips, knees/back of knee and ankles. Depending on the severity of the spasticity, the areas of incisions could be in only one spot. Fortunately, Jordan did not need to wear a scoli-jacket or any other equipment because the test were inconclusive and Dr. Cristafaro ruled her okay. For now....
I make sure Jordan does not sit in "W" stance and that she holds her head up, and sits upright to her best ability. This helps not only with her posture, but with uncontrolled drooling and speech. If your child has a development that can be corrected or maintained, don't be afraid of the possibilities of surge because cerebral palsy can not be fixed but only maintained. Stay in communication with your child's Physiatrist, occupational and physical therapist so he or she can offer the best solution to help your child live their best lives.
If you are in the greater New York area, The John A. Coleman School is a great place to start once your child enters the early intervention program. There they offer a state approved program that offers excellent educational opportunities for children with special needs including physical, occupational, and speech therapy. Located in Manhattan and White Plains New York, John A. Coleman school provides social work, therapy, and educational services. Their web address is: http://www.setonpediatric.org Jordan was a student in their early intervention program when they were called St. Agnes Children's Rehabilitation which they still are, but have expanded into the John A. Coleman School.
Contact your cities local department of education, social security, or local social services office who will be able to guide you to the appropriate professionals. Here are some helpful web sites to assist:
1. United States Department of Social Security http://www.ssa.gov
2. United States Department of Health http://www/hhs.gov
3. United States Department of Education http://www.ed.gov
Good luck!
