Last week Jordan and I saw Dr. David VanDyke, a neurologist through Ken-O-Sha. He has years of experience and is highly regarded in his field. He had previously evaluated Jordan just over a year ago when she started in the Early On program and indicated that he felt she may have mild cerebral palsy and recommended to our pediatrician that she have an MRI to evaluate that. The MRI came back with that exact diagnosis and she is now classified as CP - class 1. This basically means that she has developmental delays but is able to function quite normally in most ways. I was excited to see what he thought of Jordan's progress and if he had any indications of any additional diagnoses.
After a short time of observation and conversation, Dr. VanDyke mentioned that he felt that what he saw with Jordan was not a result of genetics or an identifiable syndrome but was more likely to do with the mechanical development in utero during the pregnancy. He said that the pathology report of my placenta (which was small, hard, and shriveled when I delivered Jordan at 39 weeks) "made what hair he had stand on end!!" He was amazed that I had no indications that something could be wrong and seemed surprised that nothing was ever noted during the multiple ultrasounds performed throughout my pregnancy. I am not sure that I want to blame the ob/gyn or ultrasound techs, but I wonder if anything could have been done so that Jordan didn't have to face so many challenges so early in her little life. Dr. VanDyke told me that he did not feel that there would be any identifiable connections to a genetic defect or syndrome although he encouraged me to continue to have her evaluated as there is always medical advancements that may benefit her.
Dr. VanDyke also discussed with me her extreme difficulties with swallowing and suggested that we may want to look into an inpatient intensive feeding program when she is ready to learn to eat. He said that the top program he knows of is at John Hopkins and another highly recommended one is Columbus Children's Hospital. I briefly looked online at each of these and am not sure how they differ from Mary Free Bed, but will consider more research when Jordan is ready to eat. He also threw out the "magic" number of 5 - for the age when he projects she may be ready to be taught to swallow. Although this seems like a long way away, I was glad to hear that he saw no reason that she wouldn't make a full recovery and be able to eat fully someday.
Overall, Dr. VanDyke said that we are doing everything we can to provide the help Jordan needs to move as far as possible to her potential. Although she is likely to be just below "normal" - maybe some learning disabilities and lack of coordination and balance, she is going to continue to experience delays and he encouraged us to continue to receive services for her in all areas.
I was very pleased with this appointment and feel encouraged about Jordan's overall development and her future. It reassured me that we are doing the right thing in how we are currently treating her - focusing on speech and communication and allowing physical development to take a back seat for now.
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