Hard of Hearing: our journey helping our daughter hear

In March of 2012 my mother and husband began to express concern about our daughter Lillian's hearing.  I was very pregnant and could see how smart Lillian was, so I didn't see it.  After visiting our pediatrician for one of our princesses many ear infections, she told me that they screen all children at age three and not to worry. She had passed her new born hearing test the second time around.  First time there was fluid in her ear.   I pushed it out of my mind, we had visited the ENT and they had not said anything about hearing testing.  Not all children are the same, while her older brother is very mellow and a great listener Lillian was very active and all over the place.  She was just trying to figure out the world around her.  Often times in photos she would not be looking at the camera because well I know now she couldn't hear me say cheese.

Sadly I realize now how much those few months could have meant for us if I had gotten her hearing tested earlier.  No crying over spilt milk-  clean it up and move on and we have.

After having baby boy and coming home we all had colds,  Lillian had a double ear infection and could not hear a single single thing we yelled at her, and oh we yelled treat, cookie, candy etc.  We made an appointment at the county education audiology department, learned more sign language and waited. 

Lillian was two years old and nine months when we were first told she had a hearing lost.  That morning I knew, it didn't shock me.  I knew so little about hearing test that I did not understand the degree of her hearing loss for sometime.  They referred us to UCLA,  who had the skills to get the additional test we needed but in my opinion lacked the skills to work with my child and had horrible bedside manor.  The first time that we heard about hearing aids was standing in the waiting room when they told us we had to pay the money up front because insurances never cover them.  That was a shock to us.  First that she needed hearing aids(a year later they are my most favorite invention in the entire world and I love them) and second that insurance would not pay for it.  Without them my daughter can only hear airplanes....  she needs them but they will not cover a dime.  That made me cry- it still upsets me.  We are luck, really really lucky.  We have family that were jumping at the chance to pay for them,  we also put some money in excited to give Lillian this opportunity to hear. 

We opted to go to a private audiologist who came recommended by our early start case worker closer to our home.  UCLA was over an hour away with no traffic, with a little baby and extremely active Lillian we just could not do that drive all the time. 

We meet with them and a week later Lillian got her hearing aids.  Phonak Nadia http://www.phonak.com/com/b2c/en/products/hearing_instruments/naida/overview.html  They recommended the more powerful model because although we still did not know Lillian's true hearing  loss due to her lack of cooperation during testing.  The night before we went to the audiologist I let Lillian watch a movie on our portable dvd player.  I put the earphones inside her little ears and turned up the volume ALOT.  She loved it.  She watched Lelo and stitch. 
The next morning we went up to her audiologist.  They had programmed her hearing aids and showed us how to put them on her.  She heard her baby brother for the first time.  Her face light up.  She heard my voice also.

Lillian watching her favorite movie Finding Nemo with her hearing aids the first day she got time.  September 7th 2012.

 Her actual hearing aid is purple and we originally ordered light pink ear molds but due to a mix up they came hot PINK!  Which was a blessing because I could see them in her ears when she was across the park.

A month later we had a sedated ABR at UCLA in addition to a CAT scan to find out about the anatomy of Lillian's inner ear.  It was a good thing we ordered the more powerful model :-) 

I mistakenly thought we would plug Lillian's hearing aids in and be good to go.  I underestimated the amount of work she had to do to catch up and learn spoken language.  While she was being evaluated for her first IEP (Individual Education Plan) by our home school district, I realized how little she actually understood. 

It was difficult.  I wanted her to do well, but was being shown how far behind she was.  She was frustrated and would get upset.  Yet there were moments she would shine,  she would laugh and be silly and win over everyone she interacted with.  I was thankful for these moments, she is a love and I wanted others to see this. 

Good news was she was able to go the school in a school district in the next city over, its wonderful a new classroom for the deaf and hard of hearing focusing on spoken language.  It's such a blessing in our life. The teacher and her aid have an amazing since of humor and Lillian fits right in. 

 We were lucky.  Lillian liked her hearing aids.  She wore them mostly all the time from the beginning.  We were advised to be in charge of when she wore them, don't let her be in charge.  Sometimes when she wanted them off I would put them back on back on back on to prove my point.  I really tried to be considerate though, some situations with really loud noises I would offer her the option of not wearing them.  Her aids are so loud I can hear them when she starts to fidget with them.  Sounds like radio static. 
  Sometimes at the park she would take them off and hand them to a friend or parent.  All of which knew to bring them to me.  She chewed the ear molds once or twice in the car when she was mad.  Oh dear.  She learned quickly not to bit them as they did not work when they had holes through them.  Once she attended school they got her to wear the brilliant clip  Which helped keep the aids on her body if she pulled them out. 

This is our journey.  Lillian at the age of three was diagnosed with having the understanding of a infant.  Simple commands like hand me the blue car, or put the red block inside she had no understanding of.  She has made 18 months progress in a years time with her hearing aids.  We are so proud of her.  It takes a lot of work, but that's what parenting is it's a lot of work.  I happen to think it is all worth it.   Best investment to be made.

I wanted to keep a record of Lillian's journey.  Our Journey together.