Wednesday, June 5, 2013

Ups and downs

Sometimes I wish Riley's illness came with a manual.  Something that helped guide us through this process.  Instead we learn through trial and error and a whole lot of research and reaching out to the network of resources we have. (Friends, others with similar situations etc.)  But, since there really isn't a manual we try to do our best for Riley.

Last Friday we had an appointment with an audiologist at the Providence Speech and Hearing Center.  Riley's hearing was tested using various devices and I sat with her in a room while the audiologist played various sounds to see what she reacted to.  Although, she didn't display the reactions he was looking for I could tell by holding her that she was having some sort of reaction.  Unfortunately, it wasn't a very promising appointment as far as what type of hearing ability Riley has and we were told she has profound hearing loss.  One of the things that can go as a result of bacterial meningitis is hearing and cochlear ossification is something that can occur as well.  cochlear ossification

The audiologist explained that although Riley had a clear path in her ear right now it is very possible, thanks to the meningitis, that cochlear ossification will develop and develop soon.  I asked him why this was and he said there wasn't a real study done to show why they just know it can.  Once this happens there is no turning back.  Her hearing, in whatever capacity she has right now, will be gone.  Back when we first landed at Healthbridge, one of the doctors Dr. Amelie, discussed with us the findings of these early hearing tests and the fact that in his years of studying hearing loss in young patients, it can come back.  He said he spent years researching hearing loss in infants at UCI and this was something he had concluded.  This has always stuck with me.

The next thing that was discussed was cochlear implants and whether Riley would be a candidate.  If she were a candidate and if she had these placed we could essentially save her hearing as whatever ossification may occur would go around the implant therefore not block her ability to hear sounds.

Cochlear Implants

I left the appointment pretty sad. All of this is so unfair to Riley.  I cried to Dave, cried to my mom and then realized I needed to pick back up and find what was best for Riley.  What could we do for her in this situation?

I requested a sedated hearing exam however the earliest they could get one on the calendar was July 29th.  At this point I feel like we are in a race against time.  After sending the audiologist the report from CHOC before we discharged and a lengthy discussion with him this AM I know she needs the cochlear implants.

While talking with my parents last Friday we all had a light bulb moment and my parents brought up the House Institute of Hearing.  I called and got Riley an appointment for next Monday.  First and foremost for a second opinion and also because I feel this is somewhere she needs to go.  When I told the audiologist our plans this morning he actually encouraged us to have Riley seen at the House Institute and immediately faxed me his test results to bring with us to the appointment.  So, hopefully this is the best route to go in order to not miss the window we have to get Riley cochlear implants before she isn't a candidate anymore.

Meningitis and Hearing loss

Now, I realize that cochlear implants are new.  I realize they are controversial.  But, I know in my heart that they are what Riley needs.  Period.

After Fridays appointment I was really looking forward to a weekend of family time around the house.  We went swimming Saturday and had Grandpa/Grandma Hopper and Jen & Casey over late afternoon for a bbq.  Unfortunately, Logan got out of the pool and started vomiting which then led to all the other issues you can have when your tummy is upset.  Thankfully, we had help around as our night nurse was sick as well and we had to go without a nurse for a few hours before one could get to our house to sub.  When it rains it pours!
                                                                    Post swim strut!
                                                                     Sicky Logan :(

Logan woke up Sunday morning feeling "himself" as he liked to call it and we thought we were out of the woods.  Yeah, not so much.  Mason and Dave were hit with the same fast moving tummy virus as were Grandpa and Casey.  And here I thought we had escaped flu season!

Yesterday, Riley had her appointment at the Center for the Partially Sighted.  What a wonderful place.  We instantly felt comfortable there and the thorough exam they gave Riley and open ears to listen about what has happened to Riley was comforting.  The ophthalmologist himself lost his sight a couple of years ago so he can relate to many of the issues we are facing. 
                                                              Trying on some glasses
Thankfully, Riley has sight.  Right now she tends to favor certain areas and move her eyes certain ways to see better but, she has sight!  They recommended glasses to help bring her vision within 16 inches of her face which will mimic the sight she would have had at 9 months old before she got sick.  We ordered a cute pink pair and they should be in next week.  It's appointment like these that I would have never thought of.  You know without that manual but, Yolanda the sweet, gentle, visual stim therapist set the appointment up for us.  For that I am so grateful!

Yolanda attended the appointment and now has some tools to use to help Riley even more.  We'll have to get a video of Riley responding to her commands like, touch the ball or touch the picture etc.  She has been a true blessing for Riley!

Today Riley had PT in the morning and did so well.  I am so proud of her and how far she has come.  The therapist even noted a significant difference from just Monday in what Riley can do.  She was lifting her head when needed and being an active participant.  Something we've wanted for so long.


Thank you to all of you for your words of encouragement and positive comments.  At one point this weekend I just looked at Dave and said how is this our life.  But, it just is and he reminded me to hold on to the hope we have in Riley and the progress she has made.  It really is amazing and something we take for granted sometimes because we are around her the most.  It's the pictures from a few months ago or videos of things that she is doing now that remind us that no matter how long the road is it is something we can do for Riley.

Until next time.  Fight on!

Dave, Megan, Logan, Mason and Courageous Riley!

1 comment:

  1. Thanks for keeping all your friends posted. We think about Riley all the time. If Mommy needs anything from Dr. M, call me please. You continue to be an inspiration to us all, Megan.

    Love, Cindy