Tuesday, October 29, 2013


We had a great semi normal weekend last weekend.  Filled with family, friends and fun.  It was nice.  I'm exhausted.  But, I'm grateful for the memories that were created. 

Last Thursday we headed here:

It's no secret that I LOVE my Trojans and Trojan Family (yes it does exist) and so ending up at Keck with Riley was relieving.  Why?  Because after months of wondering when? where? how?  we finally landed somewhere that will be able to help Riley with her bilateral Cochlear Implants.  I can't even tell you the number of times I've cried, vented, called, tried.... to just make this a reality. 

We met with Dr. Rick Friedman.  And just as his bio says he is one of  the nicest  and easiest to talk to doctors I've met in a while.  When he asked if I had any questions I let him know I had done a ton of Dr. Google research.  He then asked if he checked out ok.  He does.  He has a ton of experience and passion behind what he is doing.  Doctors like that are the ones you want to be in front of and want on your team.  My only nerves that day came from navigating the parking structure.  Really, trust me, if you'd driven around the parking lot maze like we did for 37 minutes (yes, I timed it) looking for a parking spot, you'd understand!

If all goes as planned, Riley will have her CI surgery on December 23rd.  The best Christmas present I have ever received.  Really.  Now we just need to get past the ACTH and hope that all goes well with that and we're good to go.  And..... Riley will be the 1st ever Pediatric CI at USC.  That my friends gives me chills.  The excitement I had walking out of that appointment really helped set the tone for the rest of the weekend.  We are so thankful to each and every person that is helping to make this happen.

Friday morning Riley had PT and she jumped right back in.  Her therapist had her on her knees and arms practicing lifting her head up and she did this:
Riley trying her hardest to lift her head,
Holding her head up with some support.

Friday afternoon I ran over to Logan's school to join his class for the October birthday celebrations.  There were 4 birthdays in the class in October and Logan had been waiting since September's celebration for his party!  He really is my child, making his birthday last all month long!

Mmmm cupcakes!

At the front of the class with his birthday balloon!

Friday night we were able to meet up with Tia T and Uncle Mike for the Zac Brown Band concert at the Hollywood Bowl.  Grammie (my mom) came over to stay with the kiddos and hold down the fort so we could get out for some grown up time.  It was a blast and a night we'll remember for a long time.  I really wish we could make these "date" nights a more regular occurrence.  And trust me we try! 

Saturday morning we headed home early so I could grab Logan and head to the USC game.  Logan was so excited about seeing Traveler and the guy on the horse (Tommy Trojan).  We met up with Grammie, Pa Doug, Uncle Brad and Molly before the game and Logan and Molly had a blast playing around together.
Best Cousins

Cheese with Grammie
Tallest to shortest with Pa Doug

Seriously!!!  Where did this big kid come from!

Game time with mommy

I've missed this view!  Finally at a home game!  My happy place!!!
I absolutely love that Molly and Logan just adore each other.  Logan was so worried about Molly holding his hand and staying close to us!  Our seats are a couple tunnels away from my parent's and by the end of the 1st quarter Logan was anxious to get back to watch the game with Molly.  There happened to be a few seats open around Grammie and Pa Doug (not a surprise to those following college football :() and so Logan was able to watch the rest of the game with Molly.  I'm thrilled I decided to go to the game and take Logan.  He had a blast and is turning in to quite the USC fan!

Sunday we headed to our first Halloween activity which was Trunk or Treat at Miss Mia's preschool.  Batman and Robin were adorable and although we missed being able to bring Riley (crowds are not good for her) we still had fun.
Batman and Robin!

Mason learning how to "Trick or Treat"

Smiles with Mia
Yesterday Logan had his first field trip to the Pumpkin Patch.  I was so happy that I was able to attend and watching Logan and his classmates together is hilarious!  Those kids have some energy.  The rain held off just long enough for us to take the tractor ride, visit the animals in the petting zoo and have a quick tour of the park.  The trip ended with the kids picking out small pumpkins and decorating them.  Being the daughter of the ultimate PTA mom I've always wanted to be able to do the same for my kids so,  it was nice to be able to participate and be there for Logan.
More selfies with Logan


Some of Logan's K friends
Today we had an ophthalmologist appointment and all went well.  We take Riley to The Center for the Partially Sighted and everyone that works there is just wonderful.  The doctor that Riley sees lost his own sight a few years ago.  He works with an optometrist and uses his computer to notate what is going on during the exam etc.  He explained Riley's actual vision to me today which I found interesting.  I was under the impression that Riley could not see out of one eye at all.  This isn't the case.  Without glasses Riley sees everything very thinly.  The example he used is that a 32 inch door opening looks like 12 inches to Riley.  Being me I joked that Riley thinks her mom is skinny!  Her glasses help to correct this and make things look like they normally would.  Once we get the written report from them I will have to consult Aunt Kara (my SIL) to have her explain to me more what it all means.  They were throwing around terms I have never heard of.

Tomorrow Riley has Visual Therapy, PT and ST.  It will be a busy day! 
Riley is doing ok right now.  Riley's ACTH dose was cut in half on Friday.  Unfortunately, with the dosage decrease Riley has started back with her seizures.  Not as severe at all.  Much shorter.  But, they are still back.  I am anxiously awaiting a call back from her neurologist's office to see what's next?  Dosage increase?  Office visit?  I'm just not sure.

Friday we'll have a repeat EEG.  I'm hoping it goes well.  I say hoping because the last time we had a routine EEG we ended up inpatient for 6 days.  We're still not recovered from that stay and would really like to avoid being inpatient for a while!
Queen of the side eye!
After all of that I am ready for a nap!  I will admit though that it was nice this weekend to feel "normal".

We hope you all have a very memorable and Happy Halloween.  Fight On!

Dave, Megan, Logan, Mason and Courageous Riley

No comments:

Post a Comment