Thursday, September 5, 2013

A punch to the gut

Sometimes I feel like I really have a love/hate relationship with the Internet and google.  The hours I've spent researching things for Riley and trying to stay on top of her illness and everything that goes with it can be overwhelming.  But, those hours have also allowed us, as Riley's parents, to be really educated about things that were so foreign to us and have given us the tools to be Riley's best advocates.

I mentioned in the last post that we were going to seek out a second opinion on Riley's hydrocephalus.  Mainly because her MRI from a few weeks ago caused the doctor at House to question whether she needed a shunt or not.

Tuesday Riley had her follow up appointment with Dr. Irwin.  I mentioned to her what my concerns were and she agreed to talk to Dr. Loudon, a CHOC neurosurgeon, about our concerns and have him review Riley's recent MRI.  Trust me when I say that Dr. Irwin really is such a blessing for our family.  Sometimes explaining why you think x,y,z to a doctor can be intimidating.  I mean I don't want to sound stupid or silly and Dr. Irwin has always listened to what we've had to say and has always steered us in the right direction.

Dr. Loudon reviewed Riley's case and agrees that Riley needs intervention.  His office just called to set up an appointment.  I'm assuming that means a shunt.  We'll be seeing him Monday afternoon in his office.  I'm sort of numb right now.  I don't really know what this all means or what he is going to have to say on Monday.  I hope and pray that he is able to help Riley.  And that we've caught this without any other significant damage to Riley's little brain.

I can't tell you how strong my mommy instinct was on this one.  I just knew.  Now I am hoping that  whatever intervention is done is beneficial for Riley in the long run.  Please say a little prayer for us on Monday or send all of your good thoughts.  This is going to be one of the toughest appointments we've had since being discharged from the PICU.

In other news... we've picked the company we're going to us for Riley's CI's.   We chose Cochlear and the type of implant that Cochlear provides is one that looks like a hearing aid over the ear with the attachment to the magnet on Riley's skull.  We chose this one for a variety of reasons and really think this company was best for Riley.  We're still waiting to see if CHLA is willing to take her case and now with the intervention needed from the neurosurgeon we may be looking a bit farther out for the CI's. 

We had a great long weekend together and Logan is really enjoying Kindergarten.  He's even begging to stay at daycare after!  It makes it much easier to focus on other things during the day knowing that he is so happy.  He's in good hands.

I'll leave you with a few pictures from our weekend.  I'm out of words right now and just ask that you keep Riley in your prayers and thoughts.  And as always we continue to Fight On!

Logan being a model at the mall on Saturday!
Mason playing at the Sacco's on Sunday
Daddy surprised us on Tuesday with a visit to PT!  Best daddy ever!
Doing homework together!

And last but, not least, our pretty princess snuggling with daddy.  She's getting SO big!


Dave, Megan, Logan, Mason and Courageous Riley

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