Wednesday, January 8, 2014


The last few weeks have been crazy!  All of us are ready to be back in to our  "normal" routine and we're looking forward to what 2014 has in store for us.  It's been nice to take a little blogging break but now I feel like I have too much to write about.

We had a nice Christmas spending time with our family and friends.  It was a difficult time for us as parents but, we powered through for the kids and I hope it was as memorable for them as it was for us.  

Since Logan had a longer break from school we were able to spend time together doing fun things and I enjoyed being able to take the boys on a few lunch "dates" (as Logan calls them)  They are both great holiday shopping partners as long as they get a Starbucks or treat!

We were also able to get up close and personal with the Rose Parade floats while they were being decorated.  Riley was able to come with us which made it even better.

On New Year's Eve we spent time with Uncle Scott, Aunt Becky, Tobin, Uncle Mike, Tia T and Mia.  The boys had fun making a mess of the backyard with silly string and pop its.

Riley has been doing really well.  The incision for her CI (Cochlear Implant) is very tiny right behind her ear.  Over time I don't think you'll even be able to notice it, especially since she is a girl.  She did have some fluid leakage New Year's week but I was able to talk to the doctor and because Riley didn't have a temperature and the fluid was mixed with old blood rather then new we were just told to monitor and swab her ear with white vineagar.   Thankfully that helped and the leakage has stopped.

Poor girl has been having some tummy issues since coming off of the antibiotics post surgery so hopefully her tummy gets back to normal soon.
We started back at PT last week for one day and have been continuing with visual stim.  Her visual therapist was able to work around the holiday scheduling so that Riley didn't miss any days.
We're anxious to see what Riley can do now that she is (knock on wood and cross everything) seizure free.  The IS (Infantile Spasms) really did a number on her progress as did the seizures she had while on the ACTH.  The addition of the Depakote to her meds also made her quite sleepy so as the days tick by and Riley is more awake, she is able to participate more in her therapies.
I know a lot of people wondered if immediately after surgery Riley's implant was "on".  It is not.  We meet with the audiologist on January 22nd for what they call the initial stim.  This appointment will be where the implant is turned on.

After we made it past the surgery I sort of put this date out of my mind as we had so much going on with the holidays.  Now that it is getting closer I can't help but feel nervous about this next step.  We've decided to do a total communication approach with Riley.  This means that we will say a word, show her a word and sign her a word.  In our opinion this is the best way to give Riley a chance to communicate with us.  We can give her the tools and then it's up to Riley what she'll use to most easily use communicate with us.   I have to admit that  sometimes the unknowns with this whole process are the hardest part.

 After her laryngoscopy and bronchoscopy at the end of the month we hope that we get clearance to use the passy muir valve again.  With the CI/Passy combination I truly believe Riley will begin to be able to communicate with us like never before.  And hear her own voice again!  Although, she cries a bit over her trach it is not like hearing Mason cry.

Yesterday,  Riley's nurse tried to introduce a pacifier like toy for Riley to chew on.  She's been chewing and sucking when she gets hungry so we figured why not?  Riley told us right away that she was not in to the pacifier.  It's through the signs that Riley gives us in her body language right now that we know how she is feeling and it's amazing that she has figured out her own ways to make her feelings known.

As Riley's nurses comment day in and day out and we see as well, Riley is coming back to us.  The ACTH really did a number on her.  But, it worked, so the pros of the medication definitely outweighed the cons.  Her face is looking more like "Riley" and the bumps that covered her face are almost all gone.

As we tip toe our way through the first few days of 2014 we are still take things one day at a time.  Never knowing what tomorrow will bring is frustrating but, we plan our weeks as they come and then just go. Cheers to all of you who continue to support us through this journey.  We're hoping for a year filled with love, laughter and dreams that come true!

Fight On!

Dave, Megan, Logan, Mason & Courageous Riley

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