Posts filed under: ‘hearing aids‘




Usher Syndrome mother to be??

Many Deaf people tried to scare me to not get pregnancy. They said childbirth can cause my vision loss to get worse. I didn’t buy their stories. There is no proof of this. I have done research on the internet about Ushers Syndrome. This is not true that it affects the mother’s vision. That is no evidence. The devil wants to scare RP & US. I don’t believe that. I only trust God. I pray to God. I will not be blind after childbirth. I need my vision because I’m an artist and create jewelry. I love the beautiful colors!

I have a friend who has US like me. She asked me if would lose her vision during pregnancy and childbirth. I told her that’s not true. Other women are concerned about this. When my baby is with me. I will update my posts to let you know what’s going on. My friend asked me “Will your child be born deaf and US? No, my husband’s family have no deaf or blind. He does not carry the US gene. Both of my parents had to be carriers of the US gene. My husband’s DNA does not carry the US gene. My children will be carriers of the recessive genes. I believe my children will be hearing.

I found the article about usher syndrome mother. Usher’s Syndrome: Growing Up with a Deaf and Blind Mom A lady didn’t have hearing aids or cochlear implants. I did not want to be the same as her. I was concerned about not hearing my baby’s crying, cooing and other sounds. I could not hear with hearing aids. I thought I might know my baby crying with only a SA 101 Basic Remote Receiver with a light. I am not able to see the light when I am in the kitchen or bathroom. I did not want to trip over my small children because I can’t hear and not see well. My option was to get a cochlear implant so I would hear my baby’s crying, cooing and other sounds. I want to get a Graco imonitor Video Vibrating Baby Monitor or
Summer Infant Slim & Secure Handheld Video Monitor
. This is very important so I can know when my baby wakes up from nap.

My plan was to get cochlear implant before having children. It would be easy for me. God had a plan for me and my husband to have children after I received my implant. Thank god! I have a wonderful hearing husband. I don’t have to worry about not being able to hear anymore. It was gift from God.

1 comment January 31, 2010

Usher Syndrome

Information about Usher Syndromes. You want to know what is that mean. I am giving you the links.

Usher Syndrome

Information About Usher Syndrome

Night Blindness:

* Can’t see when coming in from bright sunlight
* Trips over things when light changes or light is dim
* Stays near a light in a dark room or at night
* Moves a speaker so light falls on face
* May express a desire to enter a room before it is darkened (movie theater, etc.)
* Avoids conversations in a darkened area
* When walking along a road at night, may appear to stagger or lose balance after an oncoming car has passed
* Has problems reading under some lights or in dimly lit areas

Glare sensitive:

* Squints and shades eyes in bright lights or fluorescent lighting – complains that the light hurts his/her eyes
* Likes to wear sunglasses even in buildings, but especially in bright sunlight
* Avoids participating in outdoor sports when the sun is very bright
* May appear awkward when exiting from the inside to the outside of a building (when faced with bright light)

Needs contrast:

* Has difficulty reading light copies or ditto copies
* Often spills when pouring liquids
* Can’t see stars at night

Restricted field:

* Startles easily
* Seems to hold eyes in a different direction when looking at some things (because of islands of vision)
* Turns head while reading across a page
* Uses finger to mark place while reading
* Can’t find small objects that have been dropped
* Fails to glance at another person’s handwaving from the side
* Bumps into people, tables, and chairs
* Stumbles on stairs and curbs
* Is quiet in a large group or may edge him/herself to one side when placed in a group
* Frequently fails to understand or misses groups instruction. Often relies on friends for information
* May appear to ignore others standing by his/ her side
* Prefers conversation at distances of 4 to 6 ft.

Problems with visual acuity:

* Holds book close to eyes, or bends to read
* Places face close to desk while writing
* Sits near blackboard

Balance problems:

* Can’t ride a bicycle
* Is considered clumsy
* Loses balance easily in the dark

Other:

* Frequently last in completing group activities
* Exhibits symptoms of anxiousness in new areas
* Often last to enter the room
* May have some repetitive behavior (seems to do the same things in the same ways, or continues to order the same things at lunch)
* May choose to stay home alone rather than be faced with the embarrassment of dealing with a new situation in the dark
* May appear unconcerned and may fail to fully participate in groups activities
* Frequently hesitates at the top or bottom of stairs (for orientation)
* Avoids walking or running in unfamiliar areas, especially when there is bright sunlight or when in a darkened area
* Appears to be constantly visually scanning a group

Hearing Loss in Usher Syndrome
Type l

* Children are born profoundly deaf or with just a little hearing in the low tones at loud levels of sound.
* Most but not all state that hearing aids help only a little or not at all.
* Some young children are showing benefit from cochlear implants.

The list is exactly what I was doing in the past. That is why my choice was a cochlear implant to hear. This helps my balance and I hear better. I plan to get bilateral cochlear implants after my childbirth.

My goal for Retinitis Pigmentosa can be treatment by stem cell research or retinal implant. Because I don’t want to get blind in the future and I admit that I don’t want to learn braille. I am so shy. I am still taking an Eye Vitamin supplements from Ocuvite® Lutein Eye Vitamin and Mineral Supplements . This is helping me postpone the blindness til late 40’s to 70’s. Now, I can’t take this supplement during pregnancy. That’s not good for my baby. I am taking a prenatal with DHA and Omega-3. The DHA with Omega-3 is helping promote health in our brains and eyes. After my childbirth I will take my preservision Eyes vitamin supplements again. I will never give it up.

Add a comment January 29, 2010

3 to 7 days

I was doing laundry. I woke my honey up from late in the afternoon. I took off my CI and hearing aid for a moment. The washer and spinning were LOUD! My husband’s wishing to have HE washer/dryer with silent sound. I grabbed the Aleve for headache relieve. When the pain is goes away. I put CI on. I felt so much better.

I made chicken & artichoke pizza for dinner. I heard many noise with metal stuff. It was pizza sheet’s sound on the counter and adds the topping on it. I put the pizza in the oven and heard the rack in oven. After I took it out of oven and does pizza’s slice cut with sound. It was interesting.

4 days

I heard something and asked Chris what is that? He said, “It was AC vents.” I was saying ohm. We went to Firefly Coffeehouse for his study. I was playing with my laptop and listen music on ipod. I heard people chattering. We came home. He got ready for go work. I was listens the music on ipod. I did with iron for Chris’ uniform. I made a creamy chicken and artichoke soup. The artichoke is my favorite!

5 days, my husband left out of town in early morning. He sent me blackberry instant messenger to let me know. He wanted me to put CI on before storm and rain come. I got up at 9:15. I missed to hear the storm and rain. It was passed. Darn it! I am looking forward to hear rain’s sound again this week. My dog started to howl real LOUD! It drove me crazy! LOL I forget my moleskin left at my mom’s house. I sent a text message to her. To remind her bring the moleskin to her work. I need to replace the new moleskin. I went to mall and meet my mom’s work. I rode on the bus to mall. I heard the noise. I stopped by my mom’s work to see what is up. Her co-workers are happy for me to hear with CI. My hair was down the time. I walked around the mall until my mom got off work. She drove and drops me off at home. I let my dog out pee. I wanted to listen the ipod while I making man’s bracelet with macramé.

My honey came home from work and saw my dance with ipod. He was big smile and crying. We went to mall. I bought a new pink purse to fix for my laptop and stuff. We walked around the mall. We went to his friend’s house for a little while. I took my hearing aid off from my right ear. Because my right brain was headache and my left brain with ci isn’t headache. It was an opposite.

6 days, my honey and I went to his friend’s house for visit. I met a new friend of my honey’s friend from high school. She played on her bass guitar. I was enjoying the sound of bass guitar. She is nice lady! I was so tired and go home.

7 days later, I turned my CI on P3 in silent room. I heard my dog’s chewing with her greenie. I held the greenie and let her chewing. It was interesting.

Add a comment July 15, 2009

Activation (7/7/09)

I went to ENT for my activation.   I was so excited and anxious.   At first thing my audiologist put the sound processor on my left ear to see if the electrode array was working.    It worked fine.  I can feel the nerves in the left side of my face.  I signaled with my hand to show that I could hear and feel it.  Then the audiologist turned on sound, but was soft.  I felt dizzy from the sensations in my eyes and all around my head. It Startled me and I laughed, but It means that the implant is working fine.  This is my very first experience with that much sound.    I didn’t cry when it was too loud, but the audiologist started it again more softly and gradually increased the sound after that.  I heard the audiologist’s voice, then my husband’s voice.  My mom’s voice and my mother in the law’s voice came after that, and they were both crying.  They were all so happy.  I stayed there at the audiologist for 2 half hours.  When I left ENT and went  outside, I heard the wind moving the trees, and it made so much noise.  I can hear people when they are chat in on about things.   This is my first experience with sound.  When my husband started the car engine I could feel the vibration,  was able to hear it for the first time..

He turned on the Ipod for me to listen.  My first song was “Building A Mystery” by Sarah McLachlan the acoustic version and the second was “Hey There Delilah” by the Plain White T’s.  My Third was “A 1000 Miles” the acoustic version by Vanessa Carlton.  And the last was “What a Wonderful World” by Louis Armstrong.  It all was interesting!

The most annoying sounds are the toilet flush, a coffee grinder, and frappuccino blender at Starbucks.  My skin is still sensitive behind my ear from the surgery.   My Cochlear Implant processor is heavier than my previous hearing aid.

I visited my uncle and aunt for a little while.  My uncle played with a guitar for a couple of minutes, which I enjoyed quite nicely.  I played the piano and felt the sound.  I heard my dog’s bark for the first time and it is real loud.  She growled at the other dogs to.  Both my uncle and aunt are happy for me to hear sounds.  After I left their house I went to my sister in law’s apt briefly.    She was so excited for me.   She loves the cochlear implant look, and thinks it looks cool!  When she said “WOW!,” I could hear her beautiful voice.  Her good friend that was there loves my CI too.  Then we went to our friends’ house to show them my cochlear implant too.  I could hear their children’s voices.  I turned my head to look one of children crying when they fell on the floor sound, and it sounded like a thud.  The awesome sound was when I heard the cats purring.  My friend’s brother came to visit and saw my cochlear implant.   He too said, “I am happy for you” but I could understand through reading his lips.  I said “thank you.” And He said, “You’re welcome.”   And I understand him.  When I told my husband Chris that I can understand through lip reading, he was excited.

My husband and I went home and opened the box from the Cochlear Implant company.   I loved it!   I was so excited.  I would love to show off my cochlear implant and all the accessories.  The cochlear technology is so cool!   My impression of the Nucleus Freedom is good.   The Technician forgot my batteries and charger when I left ENT.   We will just have to pick it up tomorrow.

When my husband got accessories cord for the TV into the CI Processor, I was impressed with the long cord.  Plus it had volume on the cord, it was so great.     I heard people on the TV speaking.   I tried to lip-read from when people were speak.  My husband explained to me, how to listen and focus on the different voices.   I heard it’s different and was not the same.     Chris has a bad habit of tapping on the chair to get my attention and it startled me.   I told him I didn’t like that.  I was overwhelmed.  He was laughing.  I told him to call my name Jessica instead tap on me.     He gave me 6 different choices for a name he can call me.  Jessica, Jessie, Jessy, Jess, Sweetie and Honey.  I want him to repeat them so I could hear them a couple of times.  He said Je-ss-ica 3 times.  He said Je-ss-ie, Je-ss.  I was surprised.  But I was tired and had a long day!   And I had a great time.

2 comments July 9, 2009

Early Life

I was born with Ushers Syndrome – a rare genetic disorder involving a profound loss of hearing, balance and vision problems.  I was diagnosed with the hearing loss at 18 months old.   I started wearing hearing aids by 2 years old and started going to school soon after that.

By age 3 I was miserable because I could not communicate.  My dad and mom talked to my teacher and they decided I needed sign language.   I learned very quickly to communicate with SEE “Sign Exact English”.   I attended to Pre-School for hearing impaired.

I started to learn ASL at age 10 half years old at deaf school.    I learned very quickly to communicate with ASL.  After my dad died of cancer until 5 months before I was diagnosed at 15 half years old with Retinitis Pigmentosa and that also meant Usher’s Syndrome.    I will not able to drive.  I became angry and depress.  My dad never know that I have it.

I will update my story about Usher’s Syndrome when I was in deaf school.   It was the worse memories ever I had.  The post is coming soon.

1 comment June 28, 2009

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