Tuesday, March 25, 2014

Positivity and Prayers

Sometimes one of the hardest things for us to do (even though we preach that it's what we want to do) is to stay positive and be positive.  It's not that there aren't a ton of positive things going on in our life, it's that saying it out loud or celebrating a Riley milestone makes us nervous. '

I know I always feel that if we're making progress and things are going too well then we're days away from something going wrong.  Almost a year after coming home though we have tons to celebrate and the little girl that the neurosurgeon told Dave would be a "vegetable" for life is defying all odds and proving to us that the faith we had in her was real.

This is a picture montage of Riley defying the odds.  Riley picks her head up UNASSISTED and reaches for her toy UNASSISTED.  This is just amazing!

Since having her "ear" turned on Riley is reacting to her family, her caregivers and to instructions on what to do.  Life has returned to Riley's face and she SMILES!

Back in the PICU days one of the neurologist's who we were drawn to because of his quirky disposition and cautiously optimistic attitude towards Riley told us that once Riley smiles again big things will be ahead of her.  Smiling is a milestone we have waited a long time for!

We met with this particular neurologist on Friday.  For the last time.  He'll be moving back east to be closer to family and has landed a fantastic job in Florida.  Fridays appointment was extremely emotional for me.  Not only because we would be parting ways with a doctor that has been with us since the beginning but, because Riley really impressed him with what she is doing and she SMILED at him.  I truly believe it was her way of saying thanks.  Riley knows who is on her side and who is rooting for her.

The appointment went great.  We're upping one of Riley's seizure meds due to her weight.  It's to be expected.  We discussed an upcoming EEG.  I expressed my nervousness about another EEG.  And he reminded me of all of the positive things Riley has going for her right now.  Seizures are under control (for the most part and in comparison to late last year) and she's making amazing progress therapy wise.  Things that I know. What I was trying to tell him though is that no matter how well things are going for Riley I will always be nervous before a big appointment or test (same feelings I have for Logan and Mason).  It's how any mother would feel really.

After he was done he brought in the Sr. doctor to check on Riley and that's when I really lost it.  We were discussing Riley's implant. He was thrilled that she had it done.  He asked me about ST.  I reiterated that we are getting a new speech therapist because we need someone that can work with Riley on total communication and someone to help us help Riley find her way.  And then... he agreed with me.  And I cried.  Happy, emotional tears.

Riley having the ability to communicate with us is a huge part of WHY we pushed so long and so hard to have her get the CI.  There was a time when another Sr. doctor (in another specialty) questioned me on why we would even consider getting a CI for Riley.  As he put it in her "condition".  It took all I had at that time to hold back and not punch him in the face.   Finally someone else saw the possibilities like we do in Riley.  Finally someone else agreed with me how important it was for Riley to have the CI.  Finally.

This particular doctor could be my grandfather.  My tears legitimately concerned him I think.  He asked me 3 times how I was doing.  And if I was lying to him.  I can laugh about it now but really I wanted to scream that yes I was doing fine and that my emotions came from the fact that I just met him 2 minutes before and he wasn't a jerk, he was positive and it was refreshing.  And he wasn't brushing off my daughter because of her on paper diagnosis (it happens more then you'd think).

We also discussed who did Riley's implant and he was impressed.  He called Dr. Niparko the "guru" in his field.  The entire journey to implantation from our first audiologist appointment until now really was meant to be.  Even down to who ultimately ended up in the OR with Riley in the 11th hour.  Sometimes things do happen for a reason.

Tomorrow we'll be heading back to CHOC for Riley's 2nd Laryngoscopy/Bronchoscopy to remove her granuloma.  Now if things go well, which I am hopeful they will, we'll be in and out of the hospital.

However, there is a chance that they will need to open up her stoma site to get to the granuloma.  If this is the case we'll be in the hospital a few days.  We're really hopeful that they don't need to cut in to her stoma site.  Riley has come so far the last few weeks and my greatest fear is that a longer hospital stay will mess up this wonderful progress we have going.
On the flip side once this granuloma is gone Riley can wear her PMV (passy muir valve) again and we can hear her voice again.  We've only been able to hear Riley here and there when she makes noises over the trach we really miss her "voice".  We want to hear Riley cry, perhaps make sounds and maybe one day say mama and dada again.  She can also proceed with the swallow study once this procedure is done and start feeding therapy.  Right now Riley is 100% gtube dependent.

So even though I'd like to close my eyes and wake up on Thursday after this is all over I have to look at all of the positive things that are to come for Miss Riley once we are past this next little hurdle.  We'll be in the OR early (7:15 am to be exact) and Riley could really use your prayers this time around.  The surgeon knows what to expect and he'll be joined in the OR by another doctor with even more experience then he has just in case.  Even though I know Riley will come out of this surgery just fine the what ifs and the possibility that this may turn in to something more complicated leave us feeling a bit uneasy.

As always thank you for your continued support and prayers!  Fight On!

Dave, Megan, Logan, Mason and Courageous Riley!


  1. Crying again for all your ups and downs. Megan, you are a rock star and so is Riley.

  2. My Dears, What an amazing journey. Your beautiful daughter has brought your family together in way you never thought possible. The strength you are showing (of course you have your down days) is a lesson for all of us on the outside. We visualize a white light to encircle Riley and the doctors. Much Love- Denise and Michael