Tuesday, January 28, 2014

CI Activation was a Success!

Whew.  That's basically how we all feel after making it through the CI surgery, healing process and finally activation last Wednesday.  Now we can begin the process of helping to guide Riley to find her way to communicate.  It won't be easy but, is something we are looking forward to.
What your ear looks like.  Riley's CI is in the cochlea.

It's been quite a journey but, I can honestly say that the moment that Riley looked me in the eyes and lifted her brow, while I was talking to her, made it all worth it.  It was "our" you tube moment.  And it was better then any other one I've seen so far. :) Sure Riley didn't look at me and say mom or even utter a word but, the look, the connection we had, told me that she was thankful to be brought out of the silence that she has been living in for the last year.  And really that is why we made this decision.  Riley was not born this way.  This is all a result of her illness the effects of which could have been lessened if certain things had taken place before her official diagnosis.  But, that is all in the past.  And so, as Riley's mom and dad we only desire to get her back to as close as she was pre illness.  The CI is a huge part of this.

Now, Riley does not hear things like you and I do.  What the CI is going to do is provide the channels for her to hear sound and from there Riley needs to teach herself how to listen and decipher what these sounds mean.  Does that make sense?  Yeah, I know I'm just as confused.  It will be much harder for Riley to do this due to her TBI but, the resources and adaptive technology that exist today gives us infinite hope for Riley's future.  I mean we did call her Robo Riley at one point :)

Riley has 22 channels in her implant. (each company that makes the CI's has a different number of channels) These are connected to nerves in her cochlea.  All of her channels work and her nerves respond.  I assume, and I say assume because I haven't asked, that they all work because she was a "hearing" child before her illness.  In order for these channels to work effectively they need to also work with Riley's brain to help her process the information she is receiving.  8 channels work at a time and the implant rotates which channels are on depending on what setting Riley is in.  Even more confused?  Sorry, I am trying I promise.
Cameras ready to capture "our" moment!

We had our 2nd appointment yesterday with Riley's audiologist at the John Tracy clinic.  Everything is working as it should.  The audiologist is able to plug in to the implant and pull off data specific to Riley's implant.  For example, Riley had the implant on an average of 9 hours a day for the first 5 days she had it.  It also broke down what Riley is hearing.  Speech, music, background noise etc.  What is so important right now is that we talk to her over and over and over so that she starts to recognize sounds and associate them with different things.  So we'll continue to work on this and we know that Mason and Logan are giving Riley lots to listen to when they are around.  The CI activation was a very exciting time for us and we feel this will help Riley as she rehabs so much more as she can "hear" her surroundings and familiar voices.
Implant in place.

Friday we had a pre op appointment with Riley's ENT.  (The nice one, the one who once had a trach and gtube himself as a child).  Tomorrow Riley will be going in for a bronchoscopy and laryngoscopy to check for scar tissue.  Hopefully, there is very little and the doctor doesn't need to remove much.  We're in agreement that if Riley appears to need a lot of work done we'll hold off on it until flu season is over.  As it is the doctor has a room ready for Riley to stay overnight (just in case) but, we would like to avoid this as much as possible.  If you recall it was in the PICU that Riley got RSV.  Really just a result of where she was.  It should be a quick procedure and we'll hopefully be back home in the afternoon.

While at the ENT I was reminded of an important date that almost slipped my mind!  It has been 1 year since Riley had her surgery to place the trach and g tube.  January 23rd 2013.  The trach is not scary to us anymore.  In fact it is more reassuring to have it "just in case".  Riley has adjusted to the thing in her neck and although we look forward to the day that Riley is "decannulated" we can honestly say that it was a good decision to move forward with the trach. (Of course we wish we never had to make the decision in the first place but, it is what it is).  We're also used to the g tube and 100% of Riley's nutrition and meds are passed through the g tube.  After the bronch we will schedule a swallow study and then hopefully be on our way to feeding therapy as Riley learns how to eat by mouth again.  One day at a time!

Yesterday after our appointment at the John Tracy clinic we took Riley to have a PT/OT evaluation at the MTU (Medical Therapy Unit).  It is basically a therapy service available to Riley through the State because of her diagnosis.  She can receive services with them until she is 21.  We had held off on our initial evaluation because we have been receiving therapies through our insurance.  Knowing that we get a limited number of sessions through our insurance each year we wanted to have other services ready to start if we need them.  It was actually a really good appointment and reassured me that we are doing as much as we can for Riley.  Of course the questions that always come up in these appointments tend to make me a bit mad.  What are some things you'd like Riley to do? Etc.  In my head I am screaming that  I would like her to be able to be a normal 2 year old, I mean that's not wrong, I don't think.  But, instead, I have to come up with things that Riley can realistically work on that are within her capabilities at this point and will help her in the long run.  Thankfully, Riley's nurse was wonderful yesterday and helped me to articulate what I was thinking.  Now we just wait for the recommendations that the therapists will make and then we will decide what route is best for Riley to take therapy wise this year.
Therapy is hard work mom!

It has taken awhile for all of these pieces to come together and to schedule them all accordingly.  This before that and then hurry up and wait.  The IS's and ACTH treatment definitely threw a wrench in the plans we had for the fall but, with those behind us we are ready to tackle our list of Riley "To-Do's" one at a time in the New Year!
And last but, not least Happy 10th Birthday to our nephew Tobin!  We had fun celebrating with you!  

Fight On!

Dave,Megan, Logan, Mason and Courageous Riley

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