Eyes and Heart

Last Friday, Niko had an eye exam and an echocardiogram.  She did exceptionally well.  I was so very proud of her.  She never cried or protested. 

I ask the same question to each doctor who looks at Niko now, “Have you ever met an I-Cell patient?”  Unfortunately they all tell me no.

Report

Eyes:  Everything checked normal.  No clouding of the cornea. Retinas look normal.  She is a little far sighted but that is normal for babies this age.  The ophthalmologist told us to come back in a year and I negotiated a 6-month revisit.  Annual checkups would be routine.  Niko care is not routine care.  There is no telling the pace at which her condition will progress.  I need to stay on top of all her little parts (and there are so many little parts – eyes, ears, nose, lungs, heart, liver, spleen, bones, joints, the list goes on and on) to provide her with all the help she needs.

at the eye exam

Heart:  The results of the echocardiogram was normal; no valvular thickening or any ventricular enlargement.  This is a huge relief.  Of all the things that can go wrong, I worry about her little heart the most.  My name means heart and so the heart has always been quite symbolic to me.  I am just not ready to deal with a damaged heart yet.  It’s only been a week since the diagnosis.  I need more time. 

On a bright note, the echocardiogram technician was quite a zen master.  He had the calmest energy – calm eyes, calm voice, calm hands, calm center.  Niko seemed to have connected with him.  He really talked with her, not to me.  He kept calling her his “little dumpling”.  He stroked her and spoke oh-so gently to her during the whole echo.  I asked him the same question (if he’s met an I-Cell patient).  He said no, but he has seen a lot of unusual heart conditions in young patients, but none with the official diagnosis.  He also told me that he did his homework on I-Cell the previous day so that he would know what to look for in Niko’s exam.  I asked him if he works with children much.  And he replied that he is the specialist for children and has worked with children for over 20 years.  I was very happy to hear this because this means that we will most likely work with him again in subsequent echos.  Funny how something like this can make me happy now.     

She seemed to enjoy the echo, is that possible?