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

Thursday, January 16, 2014


I've thought a lot about these words since attending our city's City Council meeting Tuesday night.  I've tried time and time again to understand why there is a group of our neighbors opposed to the proposal for a TBI Rehab Center in our neighborhood.  I've read the literature they have handed out and looked at the FB page they created.  Quite honestly I think it just comes down to their perception of the term rehab and what a TBI patient is like.  I've even taken a drive to the street that most of those that oppose the center  live on just so I could try and see what they were complaining about.  And I just don't get it.

Most of what we were hearing was fear of the unknown.  Fear of the term "rehab" and fear of those that are different.  One gentleman actually made a comment about having to see patients in their wheelchairs being walked around the neighborhood with their loved ones.  Ummm what?

Maybe it's because I grew up knowing my Great Uncle who was wheelchair bound and present in my life and have many fond memories of the positive effect he had on our family?  Maybe it's because my parents always taught us to accept people for their differences and look beyond their disabilities?  Maybe it's because I have a daughter with a TBI who may grow up to be the person in the wheelchair being wheeled around the neighborhood?  I still just don't get it and have decided to give up trying to.

Instead... I am looking forward to frequenting the shopping center with Riley and getting her out and about to get to "know" her neighbors.  Usually, we don't bring Riley out to the store with us.  Especially if it's a quick trip to pick up milk or run by the pharmacy.  There are a multitude of reasons why Riley doesn't come, mainly because we don't want her exposed to germs and sickness.  But, I think we'll reevaluate things after flu season and make sure to make Riley a fixture in our community so that our neighbors can be taught that their perceptions are a bit skewed when it comes to what a TBI patient looks and acts like.  And maybe, just maybe, my almost 2 year old can teach her neighbors a bit of tolerance and acceptance.  I mean it's worth a try?

Needless to say the council voted 3-2 to approve the building of the facility.  We ended up watching the rest of the meeting from the comfort of our couch and I am so happy we did as the meeting went on and on finally ending at 11:30 PM.  Remind me to never run for City Council!  Now as we wait for the final approvals to be done we're crossing our fingers that the outpatient facility will offer therapy services for patients Riley's age.

Riley is doing well.  Each day she is doing something new or different.  She's smiling more.  Moving in directions she hasn't moved before and yesterday during visual therapy she completely rolled over all by herself!  All of these things are so encouraging.  I just know that Riley is going to continue to amaze us this year.  And in my opinion she is picking right back up where she left off in October when her IS's were diagnosed.  The most encouraging news to us is that she has been seizure free for over a month now!!!  (don't worry I knocked on some wood as I really don't like bragging about the lack of seizures for fear that they will return)

We're less then a week away from activation of her implant and it's a very exciting time for Miss Riley.  Mason has started spending the late afternoons with Riley.  He heads to her room on his own and goes through all of her toys in her basket.  Sometimes he'll share with Riley and other times he'll take away the toys that are on her lap.  We've even seen the" Riley smile" almost daily now.

We had to miss PT yesterday due to a fire that is in the foothills near our house.  They had advised those with breathing issues to stay indoors and we just didn't feel comfortable taking Riley out in the bad air.  We were back at therapy this morning, although it was a bit shorter then normal because Riley had an explosive diaper on our way to therapy.  I'm sure the sight of Riley's nurse and I trying to get Riley's dress off without contaminating anything else and trying to clean up without wipes (yes, the only time I didn't have wipes in my car this would happen) was a sight to be seen!  Once we made it in to therapy Riley did great and was holding her head up on her own for even longer then before!

Last weekend we were able to spend time with Uncle Brad, Aunt Kara, Molly and Luke.  It is so so nice to have them closer now and Logan and Mason had a blast running around with Molly.  We can't wait until Luke is able to keep up with the big kids!  And one day I hope to see Miss Riley and Molly one upping the boys as they play together.

As we're hallway through January I can't help but think of how fast time is flying.  I'm starting to plan the twins 2nd birthday party and it seems unreal to me that they will be 2 in a little over a month. I met with the Regional Center case manager on Monday and she was already talking IEP's and planning meetings.  Really these are still 9 or so months away but I'm not ready to even think about preschool and planning and logistics right now!  I'm thankful that we have some time and some very good friends that can help us through the process.... when it's time!

I hope that in some way as you read my thoughts weekly we are able to give you a realistic view in to the life of a family with a TBI family member.  Sure it's not easy and there are difficult days but, our lives are so much brighter by just having Riley present in our home.  Perhaps you'll start a conversation with an individual with a trach just because you know that Riley has one.  Or perhaps you'll appreciate what an individual goes through more while in a wheelchair or recovering from a TBI whether it be sickness or accident related. Maybe you'll stop and help someone with a disability or perhaps you'll look them in the eye and just say "hi". To me Riley's presence in our family today is a gift.  She's taught me more then I ever knew about myself and life.  And I hope she can teach others.  But hey that's just my perspective!

Fight On!

Dave, Megan, Logan, Mason and Courageous Riley!

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