Monday, February 25, 2008
Neurology Clinc Results
Cara had her evaluation with the Neurology Clinic at Children's Hospital this morning.
We were referred by her physical therapist who was concerned that Cara was showing signs of both hemiplegia and hypotonic cerebral palsy.
After meeting with Mary Anne (one of the nurses) and then Dr. Reilly, a firm diagnosis was given to us. She does indeed have hypontic cerebral palsy coupled with developmental and intellectual delays.
While none of this came as a great shock to us, it was still a blow to realize that our hope for Cara to catch up and be a "normal" child were just not going to happen. Dr. Reilly explained that he thought that Cara would always be a bit slow, especially intellectually, for the rest of her life. Bottom line, we oficialy have a child with special needs. She will, most likely, always needs assistive services throughout her life and especially when she is of school age. There was talk of a IEP or Individualized Education Plan to ensure that Cara gets the help that she needs. School is still, at minimum, a year away yet, and a lot can happen in that time. We will just have to wait and see how well she does over the next year and go from there. Cara will, most likely, be a candidate for HeadStart when she's three which is wonderful as I know she will benefit from the social as well as educational aspects of the program.
Dr. Reilly also made us aware of a program through the Colorado Department of Education called PEP (Parents Encouraging Parents). It is a support program for parents of children with disabilities. Apparently, they have conferences every few months around the state to share resources, new information and allow parents to meet and talk with others like them and with professionals. Unfortunately, we cannot attend the next conference, but they seem to have them often, so hopefully, we will be able to go in the next few months. I would love to network with more parents who have children with cerebral palsy and hydrocephalus!
I am to go and speak with the financial counselors with the hospital next week to start the application process for getting Cara onto SSI Medicaid to help with her on-going medical expenses. We have to fill out a lengthly application and then also go through an interview with the Social Security office to determine our eligibility. We are keeping our fingers and toes crossed as this would be a blessing for Cara. She would be able to get the best care and whatever kind of services she needs without there being any financial constraints or concerns. If she were to get SSI, we would probably do all of her therapy through Children's Hospital as we believe the clinical setting has proved to be more beneficial for Cara over the in-home setting. The girl is just too comfortable in her own living room and doesn't want to buckle down and work like she does when she goes to the clinic!
Ben & I have taken the news in stride. We were hoping that with hard work and therapy, that Cara would catch up and be a normal child on the developmental and cognitive fronts. Of course, Cara could still amaze us and overcome her challenges but we feel that we have to accept her for who she is and who she will become. We still except great things from our little girl and know that she will be the best Cara that she can be. She has a great network of loving and caring people to make sure that she reaches her every potential and for that, we are SO grateful! We thank you all for sharing in Cara's journey so far--offering prayers, support, a shoulder to cry on, etc. We can't imagine going through this alone!