Saturday, July 13, 2013

Neurology Update

You'd think being on summer vacation, it would be easier to keep up with my updates, but we have been blessed to be "busy" with fun, family activities and relaxation!  I wanted to take advantage of both kids napping right now to update on Ryan's first neurology appointment.  First, I should start by attempting to explain the difference between a neurosurgeon and a neurologist.  Actually, scratch that.  I'm not even going to try, because I really can't say with certainty that I know the difference.  But, I do know that when the head ultrasounds were showing mild hydrocephalus, they wanted us to see a neurosurgeon and not a neurologist.  Now that he has been cleared by a neurosurgeon, but we are still concerned about his significant developmental delays and certain behaviors or movements/habits he has, our pediatrician referred us to a neurosurgeon.  So, I guess I'll go ahead and try to explain the difference after all.  If I were to take a guess, I'd say the neurosurgeon is for acute issues that may require surgery (hence the doctor's title including "-surgeon"), and a neurologist is more of a doctor who will follow his behaviors, habits, and development of his brain (hence the -ist ending.  As we all know in 2nd grade, -ist means "a person who does or studies the base word").  But, I just made all that up out of thin air, so please don't quote me.  Unless I'm right.  Then you can quote me all you want.

Ryan had his neurology appointment with Dr. Lake.  She was very nice and easy to talk to, and she took her time answering every question we had about ANYTHING.  If it was way outside of the realm of neurology, she would honestly tell us she wasn't sure and let us know which specialist would be best to talk to about the issue.  I will be honest, I was a little nervous going into this appointment.  We had to main things we wanted to go over:

1.  Is there any way to know if his profound hearing loss is due to a neurological issue, in which case, would a cochlear implant not even work for him?

2.  What are all these long and scary looking words on his brain MRI report, which I may or may not have googled thoroughly?

I'll try to recap 45 minutes worth of information to the best of my ability.  If you have any questions, please feel free to ask me or leave a comment and I will clarify.  So, for question number 1, Dr. Lake was VERY optimistic about Ryan getting Cochlear Implants.  She examined him and did a few behavioral assessments with him, and she was really pleased with what she saw.  Yes, he is delayed.  He is definitely not where he should be for an almost 16 month old, and he's really not even close to where he should be for his adjusted age of 1 year.  She placed him around the 4-6 months stage just based on her quick assessments.  I know to many that may sound disappointing, but I can't tell you how proud I was.  Just a few months ago at his NICU follow-up evaluation, he was still testing out at the 1 month level, so this was a HUGE improvement!  Plus, when you take into account that so much of our development comes to us through our sense of sight and hearing, both of which are impaired or non-existent in Ryan, it truly is amazing how much he has accomplished.  Which is a big reason why she was so optimistic about the CIs.  She said she couldn't wait to see how he responded to them.  She did warn us, just as Dr. Luxford from House Institute mentioned, that they can take time to start showing results.  It's not like a magic switch that turns on and he suddenly hears.  Sound will begin to enter his brain, but his brain won't know what to do with it right away.  It can take up to a year for him to really process what the sounds are and what they mean, but that's why it's so important for us to start this process sooner rather than later.  The very next day I made his appointment for the hearing aid evaluation and trial.  We will be doing that through Providence since it is here in Orange County and will require lots of driving to appointments, but after the 6 month trial period, if we don't see any results from the hearing aids, and as long as his pulmonologist and cardiologist clear him for surgery, we'll be heading back to House Institute for the Cochlear Implant.

For our second concern, we had Dr. Lake go over the recent MRI findings with us.  This MRI was the one Ryan had done in May to check his auditory nerves and inner ear anatomy.  The tech also took some extra slides of his brain because I had mentioned concerns about possible neurological issues.  The report came back with a paragraph written about the radiologist's findings.  Only one sentence was about the auditory nerve/inner ear, and it just said everything there looked normal.  The rest was talking about his brain.  It mentioned things like ventriculomegaly, thinning of the corpus callosum, hypomyelination, etc.  Yeah.  Not pretty, and do not google any of that like I did!!  Here's the good news.  She said that all of these findings are VERY common with preemies.  She could've handed that report to any other doctor worth his salt, and he/she would've looked at it and said, "Oh, was this patient a preemie?"  There's no way to tell right now what this will all mean for his future development, but there are lots of preemies out there who have overcome issues like these and even worse.  Basically it means his brain hasn't fully developed to where it should be quite yet, but we already know that just based on his behavior.  And who knows how much he will develop and improve once we can get some sound input into his brain. 

So, this is all just part of the journey and Ryan is moving right along at his own pace.  This was a very nice bump in the road because I was honestly scared she was going to be yet another gloom and doom doctor.  Her hopefulness and optimism was definitely contagious, and we can't wait to see how much Ryan continues to improve.  We feel blessed to be his parents, and he amazes us with his strength every day!

I'll end with a few pictures from our summer so far:

Ryan enjoying the 4th of July - his little hands are so big, and look how long his legs are getting!

Walking around Fashion Island:

Backyard campfire:

Taking a nap on daddy while visiting Uncle Glenn and Monica:

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