Well, Oncology will be very happy. I have rescheduled Haven's visit to KKI.
Our Mission: We at the Kennedy Krieger Institute dedicate ourselves to helping children and adolescents with disorders of the brain, spinal cord and musculoskeletal system achieve their potential and participate as fully as possible in family, school and community life.
KKI is recognized for its range of services in areas including autism, cerebral palsy, spina bifida, neurorehabilitation and feeding disorders.
We went in 2008 at the request of Oncology to get an overall evaluation of Haven developmentally and to check her motor skills. One of our concerns with Haven initially was the possibility of Opsoclonus/Myoclonus. This was dismissed after all our testing and observations of Haven.
This time at the request of Oncology we will be getting Haven signed up with a Behavioral Therapist. 99% of Haven's disease is brain related and they will be able to start an initial marker on Haven which through appointments will let us know if there is any regression - which sometimes happens to ROHHAD children.
Another reason we are going is because Haven only knows hospitals and doctors. All of her memories are being in a hospital hooked up to chemo, prepping for surgeries, or long meeting with doctors that use big words. She has never had a childhood like a normal child. She doesn't even know how to play. She doesn't understand other kids. She doesn't understand why other kids don't have a port! Her therapist will be able to talk to her and us and help us with helping her mind grow at home. To give us help we need for her at home.
I scheduled our appointment on March 22nd. We'll go there at 11am and it will take about 2 hours. Then we will have our meeting with Endocrine after that. It will be a long and tiring day for Haven. I'll probably be holding her as best as I can while she nods off. She usually needs a nap by 2pm and takes about a 3 hour nap every day.
I'm interested in seeing what they say about her this time. I had a rough time there the first time but I was also in a different mindset and not a big fan of doctors. I have an open mind this time.
As for now, Haven is enjoying her homeschooling and not being at doctors.