Neurology

We saw the neurologist yesterday.  I actually didn’t find this appointment at all helpful.  The doctor was rather young and the room was windowless, hot and depressing.  Of course I asked her if she’s seen any I-Cell patients before, and she said no but that she read about it once while in school.  I suppose I respect her honesty but that just made her unqualified to see Niko in my opinion. 

During the “neurological exam”, she listened to Niko’s heart, looked at her eyes and ears, held her hands and tested the reflexes of her knees and elbows.  Nothing different from a regular baby-wellness checkup with her pediatrician.  She told me to expect mental delays and that she didn’t expect Niko to walk or talk.  She then suggested that we come back in a couple months.  I had to ask, “Pardon me, but we’ve seen a lot of specialists and have many more upcoming appointments.  This is all so new to me.  Can you please tell me what you were looking for in this exam?”  In other words, “What the hell is the point of this appointment?”  She explained that she was looking for Niko’s developmental skills like ability to track with her eyes, muscle tone, etc. 

I asked if she would be able to judge by examining Niko (now or in the future) whether she is severely affected or a highly functioning I-Cell child.  And she replied that there is not enough information in the very small pool of I-Cell patients to provide this kind of answer.  I felt like we could have easily reversed roles in that room.  I could have been the doctor answering her questions.  She didn’t know anymore than me.  In fact she knew much less regarding bone marrow transplants.

We have so many more appointments coming up with every possible subspecialty department.  In order to avoid being a “hospital family”, I have to weed out appointments that are not helpful.  This is one of them.  After meeting with each department, I plan to keep the relationships with the specialists who will provide useful information and treatments that will improve Niko’s quality of life.  The rest I will eliminate.    

Side note:

Yesterday I had my first “what’s wrong with your child” experience.  I was in the hospital elevator.  A nurse walked into the lift.  I was carrying Niko in her car seat.  The nurse looked and smiled at Niko.

She casually asked, “How many weeks?”

“She’s four months” I said.

“Oh, was she premature?”

“No, she’s got…… a condition.”

“Oh.”

And then she inched away from me and pressed her body against the other side of the small elevator.  This wasn’t an afraid-of-catching-a-disease-from-thy-neighbor inching.  It was more of an awkward-wish-I-didn’t-ask inching. 

I didn’t blame her for asking.  Niko is small for her age.  But this was a nurse in a pediatrics hospital.  If she reacted awkwardly, then this is an indication of the strange looks and reactions we’ll get as Niko’s condition progresses.