Ophthalmology and FAST MRI

Ok, getting around to the medical updates now.  Cole had his bi-annual eye appointment with the ophthalmologist, Dr. Jeffries.  Unfortunately it was that time again so Cole needed to be dilated.  I remember having to hold him down as a baby and feeling so bad because I knew he was scared and it stung.  What I didn't know back then is that it really wouldn't get easier.  He was so upset when he found out he needed the drops that I need two nurses to help me hold him down while the drops were applied.  And yes, tried the verbal approach first.  He wasn't having it.

Other than that, his appointment went very well and as expected.  I did ask whether any new research is suggesting any additional treatments in the future.  I've been trying to follow what's happening with optic nerve regeneration but they haven't started doing any pediatric trials yet.  Unfortunately she said it is unlikely that would help him since the communication with the brain would still be impacted.  Although discouraging, I continue to have faith that new technologies will become available. She recommended we ask his neurosurgeon or neurologist so we will do that at our next appointment. Cole has become much more verbal about what he can see and how his world looks.  Although I still don't think I fully appreciate what he explains, we are getting more insight.  For example, he said he always sees one and a half of me.  I look forward to better understanding his world...I have been told that nothing in his world is focused so that puts a lot in perspective.  And honestly, it makes the work he does at school so much more impressive to me!

Although his prescription didn't change, I wanted to use our annual allocation for lenses and we ordered new glasses.  Unless you have a child with a vision impairment you have NO idea how hard it is to find frames that work.  Although I'm sure it's hard regardless, it's much harder when the lenses are so thick and you need space to fit the bifocals.  Just when I find one I think looks great, he says he hates it.  And it doesn't help that we always go after school when he's the most tired.  Anyway, it will be nice having a back up pair!  We are constantly searching for his lost glasses.

In addition to ophthalmology, Cole's neurosurgeon asked us to have an MRI before our next appointment.  We are SO lucky to have the FAST MRI at INOVA Loudoun now.  You have NO idea how amazing this is!  It used to take HOURS to get to DC, wait for the scan, do the scan, and drive back.  It was easily half of a day.  The new FAST MRI machine at INOVA Loudoun was able to complete his scan in THREE MINUTES!  The techs there were absolutely amazing with Cole.  They really got down to his level and connected with him in a way that help reduce his anxiety over what he needed to do.

When he thinks a lot (or is lying) his nystagmus gets much more exaggerated.  I was able to be in the room with him and holding his foot and talking to him.  I could see his eyes going absolutely crazy.  It is a bit bizarre because the noises are like loud banging but they are completely random and sound like they are coming from different places within the machine.  Almost as if pieces of the machine have broken loose.  We haven't had brain imaging since 2013 so it will be interesting to see if Dr. Myseros still thinks his ventricles are "teeny tiny" or if they have gotten larger.  Unfortunately we have to wait until our appointment in November to talk about how the scan looks.  But as we know, if he isn't showing signs of a shunt malfunction we assume everything is working smoothly.

Next up is his big #8 birthday! Then his appointment with the pediatrician and finally the neurosurgeon with a surprise getaway trip for the kids in-between!!  I can't wait to see their faces when we surprise them!