#unilateraldeafness

[deafinitelymaybe]

MRI at CHLA

Ruby’s CT Scan came back inconclusive.  Our ENT noticed there was something off about her left cochlea and cochlear nerve region but couldn't thoroughly make a Cochlear Implant recommendation without getting more detail with an MRI.  So that was our next step...

On August 11th, we had our MRI scheduled at Children’s Hospital Los Angeles. This was a lot more nerve-wracking than the CT as they have to sedate young children because they need to lie still for over an hour (let’s be honest, I’m not even sure I could do that!).  Ruby had never had an IV put in her, let alone be sedated, so this was uncharted territory for us...

We had to deprive her of food starting around midnight the night before.  We were allowed to give clear liquids up until an hour or two before check-in time, which is (I think) 3 hours before the procedure.  This was hard enough.  Luckily, our little Ruby loves her juice (gatorade).

Once we arrived, we had to go through and do some prep.  They asked us a bunch of questions and got her IV started.  She barely flinched at the IV.  

The nurses and volunteers (I think some were volunteers??) there are so good about distracting the kids with toys.  Heck, I was pretty distracted myself by the bubbles and the lights.  Thank goodness for that, since I was a ball of nerves.  The IV was put in her arm, and in order to make sure she didn’t yank it out (which she still managed to do once), they covered it with a gauze/towel cast.  

Then, we met with the anesthesiologist.  He told us that he was going to use Propofol as the anesthetic because it is fast acting for both sedation and wearing off.  I couldn’t stop thinking, “Isn’t that the drug that Michael Jackson died from?!  How is that safe for my BABY??!!”  The scariest moment was to come...  Only one parent was allowed into the room while Ruby “falls asleep” (at least CHLA realizes how important it is to have mom or dad as the last person your child sees).  Harrison went in.  I waited in the other room.  It got really quiet.  5 minutes felt like an eternity.  FINALLY Harrison came back and said it went fine.  

THEN THE REAL WAITING GAME BEGAN.  We had to wait about 90 minutes for the MRI to be done.  I guess that’s just as long as brain scans take.  I tried to kill some time by drawing, doing some work on my laptop, making a run to the cafe, etc.  But time ticked by SOOOO SLOOOOOWLY.  

Finally, just after the 90 minute mark, they called me and let us know she was coming out.  We met her in a recovery room where she was still sleeping.  She looked so peaceful.  Probably the best sleep of her life.  They had us talk to her and rub her back to get her to wake up.  They weren’t going to discharge her until she was up and drinking some juice.  After about 5 minutes, she started to come to.  She was so drowsy and high off drugs still.  It was really quite adorable.  

Lastly, they gave us some take home instructions on what to look for in case there is a problem with the anesthesia.  But Ruby was just fine (despite still being “drunk”), and we got to take her home!

[deafinitelymaybe]

Just some updates...

3/27/15

Sorry, it’s been awhile since I’ve updated, so I figured I would just do a brief update about many topics all in one post.  Here we go…

John Tracy Clinic

We’ve continuously taken Ruby to Friday Family School at John Tracy Clinic.  It still serves as a great place to learn about hearing loss and how it affects our child’s development, and also, it serves as a wonderful place to network and share experiences with other parents in similar situations.  Sometimes we feel a little out of place as most families there have children with bilateral hearing loss and have hearing aids or cochlear implants.  Regardless, we like going to still get the latest on hearing loss and its technologies and hopefully meet other families of unilateral kids too.

We’ve also been going to “Demo Home” at JTC since January, and we love that as well.  This is where our Demo Home teacher, who is also a certified Audio Verbal Therapist (AVT), uses a play-based method to engage our hard of hearing child.  She not only works with Ruby, but a big part of it is teaching the parents to be the best at-home spoken language facilitators for our children.  We learn different methods to try and expose our HoH child to as much language as possible through singing songs, reading books, and playing with toys.  The parents learn how to use every day moments as opportunities to interject more language and listening.

ENT at House Ear Clinic

We’ve now gone to House for 2 ENT appointments.  The 1st one was right after her 1st ABR.  Both times, the ENT just confirmed that the anatomy looks normal from what he can see “superficially”, and also ensures that the good ear still looks good.  We just went a week ago to make sure everything looked okay in Ruby’s good ear since she had multiple ear infections over the course of the last month or so.  He said there was a little residual fluid but it wasn’t enough to affect her hearing…

EAR INFECTIONS

At the end of February, Ruby got her first real sickness.  She had a cough, a stuffy nose, and eventually, double ear infections.  We went to her pediatrician and got put on amoxicillin.  One ear got better but the other ear (her “good” ear) got worse, so they put us on another course of a different antibiotics, Cefdinir.  (We think) This one made Ruby break out in hives, so she might be allergic.  Therefore, we stopped that one and hoped that nature would take its course and make her ear infections go away.  We went in to the pediatrician’s office every couple of days to ensure that the infection wasn’t getting worse and to make sure that the fluid build up was going away.  It’s scary for Ruby because if there is too much fluid in her “good” ear, she could basically go deaf temporarily as the fluid would muffle her ability to hear out of that ear.  After the infection was gone, we made an appointment with the ENT to make sure there wasn’t any scarring and that everything was still good (see above).

Audiology at USC Keck C3

In February, we had Ruby’s first behavioral/booth hearing test when she was about 8 months old.  Our audiologist said she was a perfect patient as she learned to turn toward the visual cue and did it pretty consistently during the whole test.  I hope to explain in more detail what happens in the booth test in a later post, but I just wanted to state that this booth test verified that Ruby’s hearing is typical in her right ear, and she still had no response in her left ear.  

Our audiologist recommended that we look into getting Ruby a softband BAHA at around 12 months.  I just called our insurance company (Assurant Health through Aetna Signature) to see if they would cover the BAHA, and we were denied.  I’m going to try and fight it.

IFSP with LAUSD

We had our 6 month review for our Individual Family Service Plan (IFSP).  There were definitely things that I wanted to add/change as I now have done more research.  This whole process has been very stressful as LAUSD hasn’t been the most accommodating and has denied the addition of some services that we’ve requested (ie: AVT, mileage, Friday Family School at JTC, etc.).  We went through 3 separate sessions with our DHH teacher and Service Coordinator, and they still didn’t give me what I wanted for our family.  I am beginning to start Due Process (a way to try and appeal the IFSP) and am working on filing the complaint.  This just seems like a lot of paperwork and bureaucracy to get the most appropriate services for my daughter…

Possbility of Cochlear Implant for Single-sided Deafness?

There was another mom I recently met at Friday Family School at JTC who goes to House for audiology and ENT, and she said that her ENT (Dr. Wilkinson) is willing to perform the CI surgery on her son who has profound unilateral hearing loss.  She doesn’t know if insurance will cover it, but she did get the preliminary MRI covered.  This whole conversation got me to researching which ENTs/surgeons have done this on patients with unilateral hearing loss, and which of those patients are children. The US has been doing cochlear implants for over 30 years now on bilaterally deaf people and children, but a cochlear implant for single-sided deafness is still not FDA approved (it is however approved in other countries).  I posted about this in the “parents of children with cochlear implants” Facebook group and got pointed towards lots of great resources.  I’ve just started reaching out to other audiologists and ENTs to get some advice, experiences and information.  I will definitely keep you guys posted.

[deafinitelymaybe]

This is baby Ruby (at about 2 months old).  She was born on June 6, 2014 8:17pm at Cedars-Sinai and came in at 7lbs. 11oz. and 21.25”. She was (and still is!) absolutely perfect!  Ruby is our first baby, so we were more than ecstatic to meet her.  After passing the APGAR test and getting cleaned up, she was handed to us, and we were just soooo in love!  Everything seemed fine and dandy, and we were excited and anxious to embark upon our new lives as parents to a normal, healthy baby…  

That is, until we had our first newborn hearing screening at the hospital the day after.  This should have been our first red flag as she failed the test in her left ear, but they said it wasn’t a big deal and that lots of newborns fail for no apparent reason.  We were told that someone would be back again before we left the hospital to do a re-screen.  A couple days later, they re-screened her, and she failed in her left ear again.  And AGAIN, they were very nonchalant about the whole situation and said that there was nothing to worry about yet.  Lots of newborns fail and get better - Something about fluids possibly being stuck in the ears and their ears still developing.  Okay, no big deal.  Nothing to worry about. If there was something to worry about, they would have given us more info, right? All they did was refer us to the audiology department at UCLA where we had an appointment scheduled for a month down the road.

On July 7th, Ruby had her first full diagnostic ABR test at UCLA Audiology (I’ll go more into detail about this visit in a future post).  This is where we first found out she had a profound sensorineural unilateral hearing loss.  Besides hearing a bunch of big words I didn’t understand at the time, I don’t remember much else from this appointment other than thinking that Ruby’s future and quality of life would be in jeopardy.  We were just in shock. Why didn’t anyone at the hospital take it more seriously? Why didn’t we do more research beforehand? We were devastated to say the least.  Then, we came home and googled the heck out of “unilateral hearing loss”, “deafness in one ear”, etc.  The stats and stories that come up are scary.  After diving into the blackhole of the internet, I was certain that Ruby was going to have trouble developing speech and language and that she would not do well in school…most of which I’ve now learned is preventable with early intervention.

Now, Ruby is almost 11 weeks old and has had a 2nd diagnostic ABR (at John Tracy Clinic) which confirmed UCLA’s results and has started the Early Start Program through LAUSD.  We are writing this blog to help ourselves document this journey with Ruby as well as hopefully help others who are seeking advice and/or guidance by sharing our firsthand experience in dealing with our child’s unilateral hearing loss.  We, ourselves, have had a hard time finding other blogs or firsthand accounts of parenting a child with unilateral hearing loss, so we decided to do something about it, and we hope to learn something about ourselves along the way!

—S