Thursday, March 10, 2016

Neurology Appointment

It is my privilege to be the Mom of this amazing brew of kids.  Through them we have awesome opportunities to meet so many new people, people I would never meet if my children were all, "typical".

Today, Preston had the privilege of meeting our new neurologist.  I was not able to meet her but I had the privilege of meeting another incredible group of people.  I was a part of the American Academy of Cerebral Palsy and Developmental Medicine Community Council Summit in Chicago, where individual from all of the US, Canada and Australia came together to begin discussions that will ultimately enhance the Cerebral Palsy Community.

...the neurology story
As all of you know, Owen was verbal until the age of 4.  Within one month we watch his verbal abilities rapidly decline.  About two months ago I decided to initiate further dialog with Owen's physiatrist, Dr Law.  We met, he talked with Owen's therapist and he suggesting the weaning off of the meds along with a new neurologist. The medicine wean is going well.  Owen's muscles are doing well without the medications, much better than I had expected.  The first week of the wean was really rough, but now that we are through the withdraw phase, it is much better.

So today Preston took Owen to see Dr Ness, the new neurologist.  He thought she was awesome.  She spent a lot of time with him asking lots of questions and even conference called me in Chicago.  Just like with Dr Law, she thinks there is more to Owen than just a CP diagnosis.  She ran lots of labs today and Owen is scheduled for a brain and spine MRI on April 8 along with an LP.  We are excited that she has taken such an interest in helping Owen, because that was NOT the experience we had with the last neurologist.