Friday, March 30, 2012

One Year...


I have been writing and rewriting this post for a few weeks now, and it has been hard for me to finalize what I want to share.  It has been a year now since I lost my dad.  I still miss him every day.  I wonder what he would think of his grandson.  I wonder what he would think about watching me be a mother.  I think he would be proud of us, and about how we have been dealing with Ronan's health issues.  I think he would be a wonderful grandfather. 

I spoke to my dad the night he passed away.  I think about this conversation all the time, especially now that we have been without him a year.  We talked about March Madness.  He asked me how work was since he knew I was busier than ever during this time of the year.  Dad always wanted to hear about my job and what I was doing at work.  I think he genuinely enjoyed watching me grow professionally.  He and I also talked about what size Ronan was at that point, since I was about 4.5 months pregnant.  He asked every week which fruit Ronan was....  for those who don't know, someone came up with a fruit every week that corresponds to the size of the baby.  It's silly, but fun. 


Digressing a moment, when I was growing up, my dad threatened us with rutabagas for dinner if we weren't good.  Not sure why he chose that vegetable to threaten us with, but he used that threat for a long time.  When he found out that week 24 in pregnancy was represented by a rutabaga, he could not have been more excited.  Every week he asked if it was "rutabaga week".  He did not get to see rutabaga week, but I know he was smiling about it.

After we talked about the various representations of Ronan's size, I could tell he was tired and we wrapped up the conversation.  I do know that the last thing I said to him was that I loved him.  I consider myself lucky that I know that was our last exchange. 

Maybe this is a sad post, but I write it for the purpose of encouraging you to take a moment to appreciate a loved one.  Maybe be a little more patient.  Or a little kinder. 

I love this picture of my dad.  He spent quite some time one day, picking up all these star fish and putting them back in the water...  a nice metaphor for his personality. 
 
In the spirit of this post, I have been feeling especially grateful for all the support Paul and I have had over the last year.  I can't believe how wonderful our friends and family have been.  We are so lucky - thank you all!


Sunday, March 11, 2012

Amazing Cranial Nerve Advances

Last week Paul and I took Ronan to meet with a neurologist who specializes in surgical interventions for facial palsies.  I had no idea that there were options for a facial palsy, I thought that either the individual might work his or her way out of it, or they would have to learn to live with it.  There is not only an option, but there are several ways and things that they can do for a palsy.

Ronan has a possible facial palsy on one side of his face.  At first, we thought it was just a weakness that he would work his way out of, but as time went on, it became apparent that it could be more.  It is common for people with CHARGE to have issues with a cranial nerve or nerves.  With all things CHARGE related, it is a spectrum.  It can range from barely perceivable issues with the nerve, to full facial paralysis.  In Ronan's case, it doesn't seem to affect his autonomic reflexes.  If he makes a face in his sleep, it is symmetrical.  However, when he consciously smiles, he only smiles on one side.  It also affects his eye, and gives him a slow blink.  The eye has gotten better, but you can still tell a difference, especially when he cries.

You can see his cranial nerve weakness on his right side


I know this is might offend some people since I suppose it could be considered a purely cosmetic issue, but in this appointment we talked about what options we could pursue with Ronan.  We want him to have as normal a life as possible, and to give him as much of a head start as we can.  We don't want to send him to school with something that kids will immediately notice and potentially tease him for if we can do something about it.  Of course, we will pursue maximizing the potential of his cranial nerves before discussing an intervention of some kind, but nonetheless the interventions were just amazing.

Smile reanimation, as it is called, has been going on for awhile.  One way that they have done this in the past, especially for older patients, is to literally connect the muscle that controls your smile to another cranial nerve.  Without getting too technical, cranial nerve 7 is the one that is likely affected in Ronan's case.  Connecting cranial nerve 5 to the muscle that controls his smile would allow him to learn to control that side of his mouth.  It would mimic the same chewing action, so the downside of this solution is that sometimes it is difficult for the person to learn to control their smile and separate that from chewing...  basically, it can make the person smile each time they chew.

What they are doing more often now is a two part procedure.  First they take a nerve from your leg or use an artificial nerve, connect the muscle on the palsy side to the nerve on the side that works.  After about a year, the nerve is fully integrated and working.  The second stage they do more work with the muscle itself.  Often, they can get the patient to 75 - 80% parity or more, and then get the patient to at or near 100% with therapy.  So awesome.  These procedures are usually done once the child is 5 years old.  By then, you likely know how much of an improvement you can expect from an OT.  I have a feeling that we may be able to get a decent amount of improvement through therapy, but it is nice to know there are options if we think that is the best thing for Ronan.

On another note, every once in awhile I learn about a specialist that I never knew existed.  This neurologist referred us to an OT who focuses on smile reanimation.  She specifically works with children who have facial palsies.  I never cease to be amazed with the experts available for Ronan.

He's looking so much older now!

A future Columbia Lion?

Roar lions roar!