Today's Pediatric Neurologist appointment

This morning Derrick and I took Jordan to Ken-O-Sha to see the Pediatric Neurologist, Dr. David VanDyke. We were met by Betsy, our therapist and she attended the meeting as well. Dr. VanDyke interviewed us about the pregnancy, birth, family history, and development to this point, and then did a short evaluation of Jordan. He provided us with an idea of what he thinks is going on with her.

He identified delayed gross motor, delayed fine motor, and abnormalities in oral motor. He was concerned with her head circumference being less than 3 percent on the growth chart, even though it was similar in percentage to her body size. He considered her alert, curious, and to have good facial expression. She has no words/language and only a few consonant sounds. With her hands, she has difficulty isolating movements with one hand - she is clumsy and has tremors when reaching for things. She can weight-bear a little when held to standing and he identified a jaw jerk.

He felt that there is a difference in neurological development and identified it as "Upper Motor Neuron Difference." The cause, however, is more difficult to identify. He felt that the most likely underlying cause was the low fluid and poor placental growth during the pregnancy. He was encouraged that she was healthy and has had no experiences of pneumonia. Essentially, her central nervous system is developing differently.

Dr. VanDyke believes that it will continue throughout her life but cannot identify how much of a problem it will be. He said that delays are expected but the significance is unknown. He is anticipating that there will be minor dysfunctions such as learning disabilities and being clumsy. He feels that she is currently in the right program at Ken-O-Sha and Mary Free Bed. Continued appropriate therapy and school and home care is what we will need to work on. He would like to see gradual improvement and for us to watch for efficiency. While she is doing okay, he would like to see things going along better. He felt that this was a delay not a disability.

He recommended some diagnostic studies to help in identifying what is going on, mostly out of curiosity. An MRI of her brain might show what is happening now but will be very beneficial in creating a baseline for another MRI 2-3 years from now. He was also somewhat interested in doing some metabolic studies to look into her delayed growth.

He was interested in my family history because I am adopted and don't have a lot of info to go on. I will call my birth mother and see if she knows of anything of significance. He also said that the pathology report on the placenta identified an infection related to a maternal history of blood clots.

He didn't feel that there was a specific diagnosis that would identify what is going on. He felt that nothing designates cerebral palsy at this point but it may be identified later on. Cerebral palsy is graded 1-5 and he felt that she might fall into grade 1. He said that she could be diagnosed with CP at this point, but that it is very possible that with this early intervention and therapies that she might develop passed those minimum requirements in the next few years.

Dr. VanDyke was extremely interesting and informational and provided us with a whole new direction in which to view Jordan's delays. We now feel very strongly that something happened during the pregnancy and that it somehow affected the development of Jordan's brain and how it works. This will hopefully also allow the insurance company to re-evaluate the coverage of her therapy at MFB based on the identification of a medical reason behind her delays. We anticipate viewing the Dr's written report and will update everyone with anything else we find out from him.

I am unsure what to think of it all...I guess I need a few days to process everything. Part of me doesn't want a CP diagnosis because I'm afraid of the label and what impact it might have on the rest of Jordan's life. Part of me wants the CP diagnosis because it is something concrete that we can identify and say "this is what she has." I will be doing some research over the next few days and hopefully have a conversation with Betsy on Friday when she comes for therapy to see what her thoughts are on all of it.

Please continue to pray for Jordan and the Dr.'s and our whole family as we journey through this process.

Thank You!!!!!