Ugh.

Seriously!? Why is it when I do finally get a bit of sleep I can't dream of beautiful people but instead I dream of a creepy guy I kick in the gonads.

#FML

How's that for a rambling post!?

Beating The Odds - Our CMV Story

 

39 weeks on 11/2/09

On a snowy winter night, the contractions started interrupting what little sleep I was getting.  After timing several of them we ventured out into the cold in the hopes that when next we returned home, our little bundle of boy would be with us.

It was November 8, 2009.

At 11:20 am, Lucius "Luke" finally came into this world after a fairly easy delivery... for me.  It was, however, not so easy for him.  The nurses noticed right away that something wasn't right.  He's blood sugar was low and he was shivering so they whisked him off to the nursery for closer monitoring.

A few hours after being born

For the next several days we weren't sure what was wrong.  His white blood cell counts were elevated, his platelets were extremely low, his liver and spleen were enlarged, and he had complications from inhaling meconium upon delivery.  Luke would have good days where we thought he was turning the corner then a bad day would put him right back at square one.  Every time we thought we had it figured out, a curve ball was thrown at us.

Finally after a week without any idea what was wrong, the doctors tested for Cytomegalovirus (CMV) and shipped Luke out to the Children's hospital in Seattle.  On November 18 - 3 days after arriving at Children's - we received the confirmation we were hoping we wouldn't get.  Lucius has congenital CMV.

After talking with the infectious disease doctors, we started treatment with Ganciclovir.  This treatment would help suppress the CMV long enough for Luke's body to recover so it could fight the virus on it's own.  Within days of starting the treatment we began to notice the difference it was making.

 

A few days old

On November 25 - the day before Thanksgiving - Luke was released from Children's and we made our trek home.  Treatment continued with an oral version of the Ganciclovir called Valcyte.  Luke remained on the medication for 6 to 7 months until we were sure the CMV was suppressed enough that we could take him off it without complications.

CMV can be devastating to children born with symptoms causing hearing loss, blindness, mental disability, and seizures to name a few.  Luke has been incredibly lucky because I caught it late enough in the pregnancy that it didn't have enough time to attack his growing body.  So far we can say, he's beating the odds.  But his fight won't stop as CMV can cause progressive problems.

May 2011 - 18 months old

Luke is monitored very closely by a team of doctors and has been receiving preventative therapy treatments since he came home from the hospital.  Other than a mild speech delay and some random seizures, he's a normal toddler!  His nickname is Tornado because he never stops moving (yes even in his sleep we can hear him moving around).  He loves books and music!  It appears a love of gaming and electronics is hardwired into his DNA as well.

I had never heard of CMV before Luke's diagnosis.  In the US alone, 50-80% of the population will be infected with CMV by the time they are 40.  Most of them will never even know they have it!  (http://www.cdc.gov/cmv/overview.html)  It's amazing how something that is usually harmless can be so scary and devastating.

June is National Congenital CMV Awareness Month!  Please pass along this blog post and wear a silver ribbon throughout June to help spread the awareness!

Wow.

I really got behind didn't I?  LOL

Guess I should probably update some stuff here on the blog.  Maybe that will spark the ramblings again?

Here's a shot of the Tornado (yeah.... Squirt has been renamed!) that I got this morning.

I <3 this little boy (even when he makes me wanna pull my hair out)!!