Visit to the Neurologist

Well, Claire went to the neurologist on Tuesday.  Another doctor in another speciality trying to weigh in on Claire's situation.  As my pediatrician put it, "everyone wants to be the one to figure out Claire".  If only it were that simple.  As Dr. Richter her ENT put it, she is a complex case.  Not only is her "primary" condition extremely unusual, she has another of other symptoms that cannot be explained by her swallowing dysfunction.  So other doctors get the chance to weigh in.  See if they will be the one to find the elusive diagnosis that will explain it all. 
As most of you know, Claire has generalized hypotonia, which means the muscles of her entire body are weak.  She also had a significant delay of speech.  Another "concern" is that her cheeks are abnormally red/rosy (although her pediatrician is not concerned about that at this time).  So those symptoms combined with her swallowing dysfunction resulted in a recommendation by the allergist and ENT to see a neurologist.
So, we went.  She noted that Claire's left side is markedly weaker than her right (more than seen with just a preference for the right in a right-handed person).  Her upper body is very much weaker than the lower half.  This could be that her physical therapy has made a larger difference in the lower or that her upper body is more effected by whatever has caused her to be weak.  Her speech is still delayed.  She was been slow to reach developmental milestones.  However, the neurologist does not feel she has a "syndrome" to explain all of this.  She is just slower.  As long as she is not regressing, the neurologist does not feel there is a reason to "worry".  She also agrees Claire is cognitively intact, and her receptive language skills are very sharp.
So the neurologist decided to run a large number of blood tests to rule out a bunch of stuff (that I cannot remember).  This is never fun as Claire is a "hard stick".  The nurses spend "forever" to try to find a vein they can use.  Unfortunately, we were there after the lab hours, which is not good as the people from the lab are the only ones who can draw Claire with any good results.  So, the nurse finally tried and got nothing (after digging, which I HATE).  So they called the lab who came and got it on the first try, but they didn't have ahold of her other arm well so she reached over and pulled out the needle.  The nurses and the lab technicians were amazed with how well Claire handled the whole situation.  I said, "This is what happens when you are in the medical system from 5 weeks of age on."  The neurologist does not expect these to come back positive, but one never knows.  It will take a couple of weeks to get the results so I will post when we know something.
The neurologist also wants an MRI of Claire's brain.  This will require Claire to go under anesthesia.  Yeah (sarcastically)!  I think we are up to 9 or ten times now.  :P  Unfortunately, the scheduling office was closed when we got finished with the appointment so we don't know when it will be yet.  The nurse did the pre-screening and was asking about anethesia, etc and when she heard how much we have been under she laughed and said "you could give this info.".  I will let everyone know when we know more about when.  Again, the doctor does not think we will find anything but did caution it is possible that there is something in the right side of her brain, which would effect the left side of her body.  One can have a motor deficit without any intellectual (cognitive) deficit.
So we wait...for answers...that probably will not appear.  We are just thankful Claire continues to improve.  We will return for a swallow study and an ENT appointment in August.  Then more decisions will be made.
Thanks for continuing on our journey with us!  We couldn't do it without all of you!!