Baby no more...

It is amazing how quickly Sydney has grown. Gone is her little infant face and her imobile self. She has taken on the toddler characteristics and is scooting around, but not quite crawling. She is very responsive and social one, always trying to strike up a conversation with a stranger. Her usual babbles consist of "aaaaah" or an earsplitting squeal.

We were thrilled to see her first sign "more". I don't think she knows how to use it in context, but if you say the word "more" she will put her hands together and then look at you patiently waiting.

She visited Santa with her cousins and was happy as could be pulling on his beard (she was making sure he was the real thing). She also really enjoyed Christmas in the Park in San Jose. She loved all the lights and the animated scenes. She bent over backwards to see the snow bubbles falling from the sky. We are very excited to have our first Christmas with her.

Picnic of Hope...

Sydney's teachers are so wonderful in her early intervention program. They are all so compassionate and passionate about helping deaf and hoh children. One of her teacher's comes to my families house once a month and teaches us sign language and is so patient with our families sarcastic antics.

Another of her teachers just started a meet-up group for all of the local counties deaf and hoh kids. This really means a lot for our family, and others out there that can assimilate with us. We had our first potluck picnic at the park across the street from our house on Saturday. It was rather chilly but when the sun peaked through the clouds it briefly warmed us up. There were about five families that showed up. Everyone was so nice and I was so thrilled to see all the cute kids with their hearing aids and cochlear implants.

Ever since Sydney was diagnosed with a hearing loss I had been in search of people I could relate to that were experiencing the same journey that we are. I managed to find some on-line in forums like Help Kids Hear that made me feel not so alone. Nothing could match actually seeing people face to face and seeing how well their kids are thriving. Hearing all of their experiences gave me the hope that I needed to know that Sydney will be just fine. You would be as amazed as I was to see how cute and wonderful these kids were. They were all so well spoken, I would've never known they were hoh or deaf. I could see some of them signing to their parents from across the park. These parents once were where I am now, and to get the reassurance and see the proof that everything will be OK is all I need for now.

On a different note, please keep Sydney in your thought and prayers that her test for Usher Syndrome comes back negative. We will have to wait a long dreadful two months for the test results. The geneticist was pretty hopeful that this isn't the case, but nonetheless all of these tests are scary until they pass.

My Little Ladybug

Syd's first Halloween came and went and she didn't know any different. I had fun dressing her up in her little ladybug costume. She had fun trick-or-treating with her big cousins, Emma the good witch, Olivia the white fairy, Nicholas the turtle (and birthday boy). She lasted about 10 houses, then she was done.

She got to wear her costume on her first field trip to the pumpkin patch with her early intervention class. She liked listening to Jimbo playing the banjo in the barn. She also enjoyed watching all the farm animals, especially the chickens. The bumpy tractor ride rocked her right to sleep, so she missed out on picking out her first pumpkin.

I guess the first year is a little selfish fullfillment, she could've stayed at home for both activities for all she cared. But I have cute pictures and happy memories to share with her when she gets older, and that makes it worthwhile.

Light Sabre Orchestra

I feel so bad, all this time poor Sydney has been putting up with the squealing of her hearing aids (which happens to sound like crickets), all of this time because I am a rookie. I kept telling her audi that she was getting a lot of feedback, but maybe I wasn't persistant enough because the audi just kept telling me "I think we can stretch it out just a little longer" before we got new ear molds made. I finally called her up and said we need to move up the appointment because poor Sydney was starting to sound like a light sabre orchestra. I could always tell she was up from a nap becuase I could hear her squealing down the hallway as her daddy carried her. I could even hear my voice broadcast through her hearing aids. She couldn't even rest her little head on my shoulder without a loud noise in her ear...it makes me sad.

What a difference her new purple ear molds make. They matched them exactly to the color of her hearing aids. No feedback and no more broadcasting at all. I asked the audi if she was sure her hearing aids were on because they were so quiet.

She did an aided booth test. It was hard to say what Sydney was responding to because her attention span seemed to be short. Her audi said she was responding to voices at about 20 dB. But it's really a wait and see game. At least it lifted my spirits a little when she was able to rest her head on my shoulder and snuggle in my neck as we left the office.

Waiting to Exhale...

We finally can exhale, at least a small breath for now. We passed with good news on another round of tests on Sydney. This was by far the most stressful for Bernard and I, of course he is much more composed than I, I could still tell that he was nervous. We had an MRI scheduled in S.F. in the morning. That makes for a cheery start to the morning having to drive a 5 month old, food deprived baby in traffic with no toll money to cross the bridge; on top of the anxiety with having to sedate Sydney for this test.

We made it about a half hour late, but luckily they still took us. I couldn't imagine having to do it all again. After running all over the hospital trying to get her registered. Poor Bernard had to hunt us down because he couldn't fit in the crowded elevator with the stroller. Then someone had to point out that she had a "bilateral hearing loss at such a young age" to everyone in the elevator. But then someone else had a more positive thing to say... she is a beautiful baby. I liked the latter comment better. Let's keep it positive. I had a quick tear as I stepped off the elevator and then off to the MRI room.

The interview with the anesthesiologist was a little more rushed than I would've liked, he wasn't the doctor they told me we were going to have and I did no research on him, but I was little more reassured when I saw his picture hanging up on the wall as the department head. It was hard to leave Sydney with the doctor, she was as happy as could be and had no idea what was about to happen, I don't know if that made it better or worse when I left. Then we had to take out her hearing aids, which always kills me because than I feel she is really vulnerable. We waited anxiously until the doctor's told us it was all done. We went back down the hall just in time to see Sydney's poor little limp body being set onto a giant gurney. She had an IV in and a mask on and they whisked us down the hallway into recovery. The doctor said not to disturb her and let her wake up naturally. This was really difficult, my heart was breaking inside. After about an hour in recovery and still little sign of an awakening Sydney, the nurse said I could feed her. I quickly jumped at the chance to hold her and she nursed just as she does at night when she is half asleep. Phew...than when she was all done her little brown eyes popped open and she started squealing her happy squeals like she does at o'dark thirty in the morning. I was so relieved, we made it over another hump, now for the results.

After waiting three agonizing days, I got an e-mail from the neurologist telling me they didn't see anything causing the head tilt or the hearing loss. So, essentially that rules out auditory nerve damage, cochlear malformations, enlarged vestibular aqueduct, tumors, brain damage etc. Basically a lot of scary possibilities. So as her pediatrician always says "this is good news". We are thankful that it appears that hearing loss is all we are dealing with.

We have proof...

Sydney took her first trip to Tahoe last month with the family. I checked with her pediatrician and audi to make sure the altitude wasn't going to bother her ears and we got the ok. Sydney loved it and she didn't fuss once about the altitude. She loved the hike we went on. I think she just likes the outdoors in general. She also enjoyed music in the park with the family. She loves music. She was as content as could be, until it was time to leave and then she was Miss Fussypants.

Her audi decided to do an aided booth test on Sydney since she's finally holding her head up straight and seems to be alert. She sat us in a chair with speakers on either side of us. She made a white noise sound in the speakers at different pitches and volumes and looked for a response from Sydney. When Sydney turned towards the sound the audio would light up a plexi-glass box with a toy inside to reward the behavior. I was thrilled to find out she is responding to between 25-30 dB noises. Her audi said this is good because normal hearing kids usually only respond down to 45 dB at this age. So we finally have proof the hearing aids are working well for her and hopefully she will continue to improve the dB level that she can hear.

Higher Learning...

I thought I was well versed with taking care of babies since I "nannied" all my nieces but Sydney has challenged me to put all my years of experience to the test. Her three months on earth has taught me more than I could have ever imagined:

• She is teaching me to be a stronger person than I thought I was capable of being (still in progress)
• Not to take anything for granted especially your kids and your hearing
• Take life one day at a time because you don't know what tomorrow may bring
• A whole new language and culture that is fascinating
• The deepest love that only a mother can have that gives life a new meaning and purpose
• To be a more compassionate understanding person
• Perspective on life and what's really important
• That a child's smile can melt your heart and make even the gloomiest days seem bright

I can go on and on. I can't say it has been easy, but it helps to look back and see how much progress we've made and try to find the silver lining in all of this. Today I made her learning posters with the alphabet, numbers and shapes in both English and ASL. She is very alert as I trace off the letters and sing the alphabet to her. Her teacher also suggested to make a poster with different baby faces on it expressing different emotions.


She had her first day of pre-school last week through the local Early Intervention program. I was very impressed with her school . It is really nice. Her teacher is great and works wonderfully with the kids. She does circle time singing and signing to the kids. They do an art and crafts project. Poor Sydney's arms are just barley long enough to sit in her Bumbo seat and reach the table, so I had to help a "little". Then she fell asleep. Another teacher there works with the parents to teach us ASL. There are all kinds of cute kids in her class. Sydney is the youngest by about 9 mos. We plan on taking her to both the infant and toddler classes to expose her to as much learning that she can have.

Happy Hearing Birthday....

Well the big day finally arrived. Sydney got her hearing aids YEAH!!! She didn't even complain or fuss when the audi put them in her ears. The audi each had us practice putting the earmolds in her ear. It's a little tricky I must say, especially when Sydney turns her head to see what you're putting in her ear. Then she taught us how to care for them. I learned any type of moisture is their worst enemy.

When they were first turned on Sydney just raised her eyebrows and looked around as if to say "where is all that sound coming from". She jumped when the audi sneezed. She actually fell asleep with them in on the way home. That is a whole other trick I have to master, slipping her hearing aids out of her ear without causing feedback and waking her up. She kept them in her whole first day without a fuss. The more time goes on I think she is able to localize sound better. The fact that she isn't ripping them out of her ears is a huge plus and gives us hope that they are working for her. She likes playing with her little jingle bell bug more now, maybe because she can finally hear it?

HOH Ettiquette 101...

I found this interesting article at http://www.haverford.edu/HOH.html and thought it had some useful information that we can all use to communicate more effectively with HOH and d/Deaf individuals (these are just some highlights)...

Hearing loss effects approximately 16 million Americans. It is a complex condition which runs the gamut from minor to pervasive hearing disability. The varying nature of the condition is reflected by the range of vocabulary utilized to describe hearing loss. "Hearing impaired" is a general term which can encompass any type of hearing difficulty. "Hard of hearing" signifies hearing that is defective but functional, and "deafness" indicates that perceivable sounds have no meaning for general life purposes. Of the 16 million Americans who are hearing impaired, it has been estimated that 2 million are deaf.

Hearing impairment also has a wide variety of onsets and causes. Hearing loss can occur pre-lingually, post-lingually, or pre-vocationally (after early childhood but before age 19). In addition, hearing loss can originate in different ways. For instance, hearing loss is considered conductive when it is caused by diseases or obstructions in the outer or middle ear. Hearing loss is sensorineural when it results from damage to sensory hair cells of the inner ear or nerves that supply it, and such hearing loss can range from mild to profound deafness. Problems of the outer ear or middle and inner ear are considered mixed hearing loss, and central hearing loss results from damage or impairment to nerves or nucei of the central nervous system , the brain, or pathways to the brain.

The Hearing Person's Responsibility for One-on-One Conversation

1. Get the hard of hearing or deafened person's attention; tap on the shoulder, wave, or light flashing.

2. Look directly at the hard of hearing or deafened person when speaking.

3. Ask which communication option is preferred: lip reading, writing or use of an interpreter.

4. Use every-day topics of conversation. Do not focus on the hearing loss or the person's lack of use of sign language.

5. When speaking to people who are hard of hearing or deafened, key them into topic changes in the conversation.

6. Be friendly, patient, positive and relaxed. Be yourself.

The Hearing People's Responsibilities with People who are Hard of Hearing

1. If writing, keep message short and simple. It is not necessary to write every word.

2. When speaking, face the person who is hard of hearing directly to see if your message is understood.

3. Avoid standing in front of a window or under bright lights where the glare and shadows on the face make it difficult to lip read. If one is aware of the lighting problems, change one's position willingly when requested by the person who is hard of hearing.

4. Speak clearly and normally at a moderate pace. Do not shout or exaggerate pronunciation. Use short sentences but NOT baby-talk. Rephrase or repeat if you are not understood. Inform the person who is HoH if you are changing the subject.

5. Do not cover one's mouth or place anything in one's mouth when speaking.

6. Ask open-ended questions that must be answered by the person who is HoH with more than a "yes" or "no" to ensure full understanding.

7. Use pantomime, body language and facial expressions.

8. Be courteous to the person who is hard of hearing during the conversation. Do not ignore the person who is HoH and carry on a conversation with another hearing person while the person who is hard of hearing waits.

9. When in doubt, ask the person who is hard of hearing for suggestions to improve communication.

The Hearing People's Responsibilities with People who are Deafened

1. All the above responsibilities apply in conversations with the people who are Deafened when there is NO interpreter present, but do not expect exactly the same results. The hearing losses of the people who are HoH vary greatly in severity whereas the people who are Deafened are profoundly deaf.

2. When using an interpreter, the person who is Deafened will decide the proper lighting - never against a window or in a dark corner.

3. Maintain eye contact WITH the Deafened person while the interpreter signs. Talk directly to the Deafened person at your normal speech rate.

4. Do not talk WITH the interpreter or ask questions of the interpreter. The interpreter's job is solely to convey the conversation between the Hearing and Deafened people. The interpreter is not a participant in the conversation.

Group Rules of Communication for Both Hard of Hearing and Deafened

(Classrooms, staff/committee meetings, large groups)

1. Only one person speak at a time.

2. Raise hand to signal one's desire to speak.

3. Remember the hard of hearing and deafened folks cannot lip-read or watch the interpreter or read live captioning and simultaneously read from papers, manuscripts, letters, etc.

4. If possible, give necessary information to the hard of hearing and deafened people before the meetings take place.

5. Group meetings should always have a note taker or have minutes of the meeting available.

6. If meetings are long, plan a break for the people who are hard of hearing and deafened as well as for the interpreter, if one is being used. This is to avoid fatigue from intense concentration.

7. The T-switch is electronic and makes a direct sound from the speaker with the microphone or phone to the hard of hearing person's hearing aid, thus cutting out background noise.

Communication Responsibilities of People who are Hard of Hearing and Deafened

1. Inform the people who are hearing as to whether you are deafened or hard of hearing.

2. Inform people of your communication preference - lip reading or hand written notes, interpreter, for one-one-situations.

3. Do not bluff or fake it. It is best to be "up front".

4. Pick the best spot in which to communicate by avoiding areas that are poorly lit. A quiet environment with few distractions is best.

5. Ask for written clues of key words in the conversation, when needed.

6. Request the speaker to repeat information if you are unsure or do not understand, especially if you need exact information as to name, time, place, etc. Repeat back to get confirmation.

7. Arrange frequent breaks if discussions or meetings are long. Fatigue causes communication breakdown.

8. Know what your needs are in any given situation as well as your rights to access. To assess a communication situation, ask yourself the questions - when, what, where, why - and determine which type of communication is needed: interpreters, live caption, amplified phone, loop system, TTY, note taker, etc.

9. Be prepared to provide phone numbers for the interpreting referral service and live caption service.

Mouldy Ears...

It seems like this whole process has taken a lifetime, but really it has only been almost 2 mos. That is almost the length of time Sydney has been on this earth. She has no clue what's been going on, and to her this is normal, but to me it has been torture. From all the reading I've been doing about hearing loss in infants it is critical to get them fitted with hearing aids ASAP. The sooner the auditory nerve is stimulated the better chances they have for developing natural speech. Otherwise their brain will just map to use the other senses. They don't really start counting her speech development until she is fitted with hearing aids.

We finally met with her audi that would be fitting her with hearing aids (H.A.). It was a much anticipated visit. I asked her a ton of questions. The most important what will she be able to hear with the H.A's and will she develop natural speech. She says she should be able to hear birds and yes she has a good chance of hearing all the sounds she needs to develop natural speech. If you look at the audiogram I posted earlier it will show where on the different letters in speech fall according to volume and pitch and it also shows where different sounds fall.

We decided on getting the Phonak Nios Micro V H.A.'s. We chose the purple translucent H.A.'s for her. We want her to be proud of who she is. The audi had to take moulds of her ears by shooting silicone into her ears. These get sent off to a lab to make custom ear moulds for her. The H.A.'s are programmed for her specific loss so she can get the best sounds possible. But H.A.'s are not like eyeglasses. Hearing loss can distort sound and these are just amplfying distorted sound. It is also hard for hard of hearing (HOH) to focus on one person when people are talking in the background etc. FM system can help with this by allowing a teacher or parent to directly link into the H.A.'s so their voice in at a higher volume than the backgound noise. Speech therapy and the Early Start program also help with this as well. So now we have to wait another month before she actually receives her H.A.'s. Since I am behind on my blogging, this will be next week. I am excited and sad at the same time. Excited to see her reaction to sound and sad that this is going to be more of a reality for us.

In Between...

In the meantime while all of this hearing testing was going on they did a whole other battery of tests on her. We visited with the geneticist and he went over our family history with us to see if hearing loss runs in the family. He did a physical on Sydney to rule out various syndromes related to hearing loss that are physically visible. He checked her heart and had her blood drawn to test for additional more common syndromes and ran some genetic tests.

We also saw a cardiologist so he could review Sydney's EKG results and chest x-rays and rule out syndromes related to the heart and HL. The EKG went smoothly she slept through the whole thing. The x-ray was hard to watch. They strapped her into a giant test tube with her arms up in the air while they took a couple of x-rays. Sydney was not happy about this. Thank goodness the techs were very quick with the process though. Her ticker checked out ok.

We also visited with an opthamologist. He checked her vision to see if she was tracking objects with her eyes. He shined a bright light in her eyes. She was more intrigued by the light than upset which was cause for concern for him. So he dilated her eyes to check more closely. He said everything looks good as far as he could tell. He said they don't usually test for Ushers Syndrome unless she has balance and posturing issues. Then they will perform an ERG.

We were also referred onto an early intervention program called Early Start through the county. A Teacher of the Deaf (TOD) met with us and did a thorough assessment of Sydney and her development. She discussed the program with us and our various options moving forward. We meet with her on a weekly basis and will eventually begin meeting with a speech therapist. She has been teaching us sign language and we've labled our house with some common household words in sign. We have decided to use pidgeon sign for now as well as speech to communicate with Sydney. We figure she won't be able to hear us when her hearing aids (H.A.) are off so we need some way to communicate with her. There are many different communication options to consider though and it may change and evolve over time.

Needless to say it's been an emotionally taxing roller coaster ride trying to get to the bottom of her hearing loss. All we can do is remain hopeful and take it day by day and love the precious gift that was given to us.

Hearing Screen (Take 2)...

One week later we drove out to Oakland to get Sydney retested. They have a pediatric audi there that specializes in infant hearing screens so I felt a little more comfortable. This time she was able to get the typanometry reading right away showing that her middle ear was normal. She was able to perform the ABR on just one ear and again we ran out of time. We had to wait yet another week to finish out the test. Thankfully Sydney was extra tired and stayed asleep for 3.5 hours of testing. This time they were able to get a bone conduction test as well. We are still awaiting the final final results of this test, but the initial review of the test showed that Sydney's hearing is slightly better than previously expected. The above audiogram shows her hearing loss. Her Dx this time was mild to moderate loss in her left ear (blue x's) and moderate to severe in her right ear (red o's). This was great news for us. She has a much better chance to do great with her hearing aids and develop natural speech.

The Results (Take 1)...

The day that we long awaited finally arrived when we would get the results of the hearing screen. That morning I received a call from the early intervention program. The woman explained that they had received Sydney's results and that she was eligible for her services. I told her I hadn't even got the results yet and asked her what they were. She told me she had a severe to profound loss her right ear and a moderate to severe loss in her left ear. I was in shock but did not know enough about the subject to process the information that was given to me. I was upset that there was a hearing loss I just didn't know what it all meant at this point.

Sydney was only 37 days old but I felt like at least an eternity had passed since we first started the testing. After the news from the early intervention program, we left for the appointment with the audi. She didn't seem well prepared on how to deliver the news. She fumbled with the paper work and tried to explain normal hearing on an audiogram of an anonymous patient. Then she broke the news that we had received earlier over the phone. This time it seemed final and official. I was sick to my stomach and tried to hide my emotions as I had a list of questions I needed to ask her. We asked for a second opinion hearing screen to be sure of the results. She answered our questions, but didn't offer much reassurances or any resources to help us through the situation. I left there devastated and very alone.

Hear We Go Again...

As a first time mother, it was really scary going though this limbo state of not knowing what was going on with our daughter. Every day seemed like a year, I was getting really anxious for the next appointment. Finally, the day came. We had to keep Sydney awake and unfed for 4 hours prior to the screen to ensure that she slept soundly throughout the test. Well trying to keep a newborn awake is near impossible. My sister suggested using ice. This worked very well, but it was torture as a mother to have to listen to Sydney crying the whole way to the hospital because she was so tired and hungry.

This time the audi repeated the tympanometry test and the ABR tests on both ears. It can be a difficult process trying to keep Sydney perfectly still and quiet for 2 hours while not interrupting all the wires attached to her head. The Boppy pillow definitley helped make it a little easier. After the tests were complete I was hoping that we would finally know the outcome. The audi informed us that she would need to review the results and do some calculations. It would be another week before we would know the outcome. Ugggh...

Will We Ever get the Results...

I tried not to agonize over the upcoming hearing screen, but it was constantly in the back of my mind. We would try to do our home tests such as clapping our hands behind her back. Watching her to see if she startled in her sleep when the dogs barked etc. Her pediatricians reassured me that it was most likley fluid in the middle ear that was giving a faulty reading. This made sense to me since I did retain a lot of fluid while I was pregnant.

Finally, the long awaited day came that we would get her hearing evaluated by an audiologist (audi). We went into a sound proof room with Sydney and the audi then proceeded with a tympanometry test to test for fluid in the ears. It came out flat. She fiddled with the machine and the ear plugs for probably and hour repeating the test over and over. It kept coming out flat. I asked the audi what that meant, and she told me that she has fluid in her ears. What a relief that was. She repeated the test again, this time the reading on the graph showed a smooth peaked curve. I asked the audi what that meant, and she told me that it meant that her middle ear is healthy and that there is no fluid trapped in there. My heart started pounding a little harder and I started to get really concerned.

The audi then placed sensors on her forehead neck and behind her ears. She then proceeded to the OAE test which took about 10 minutes per ear. Lastly was the ABR test which took about 45 minutes per ear. The audi kept looking at Sydney and checking the wires hooked up to her with a serious look on her face. This was not too comforting to see. Unfortunatley, we were only able to finish the left ear before we ran out of time. The audi told us to come back in two weeks to have the right ear tested. I asked her if there was any information she could give us about her results. She said we would have to wait until all testing is complete.

Welcome to the World...

Sydney Marie was born April 29, 2009 at 9:20 p.m. She was so precious and alert when she was born. We couldn't have been happier and more excited to have her in our lives. Her apgar scores were high and everything seemed to check out ok. We were relieved that the delivery went well and she was healthy. We were pretty worn out from all the activities of the day and all the nurses coming and going throughout the night. I remember one of the nurses telling me that Sydney didn't pass her newborn hearing screen. She mentioned that Sydney was crying during the screen so, I didn't think much of it. When it came time to be discharged, they repeated the hearing screen. This time Bernard and I were both in the room and Sydney was sound asleep. We waited anxiously as they conducted the test. Seventeen minutes later the test ended and we were handed a print out with "refer" listed for both ears.

The nurses explained Sydney would have to see an audiologist (audi). Then they excused the failing screen as probably being fluid in the ears and not to worry. I was trying to stay calm but I couldn't help but feel really concerned and worried. This was all uncharted territory for me being our first child, I never knew the insurmountable love I would feel for this little one, mixed with a situation that was totally out of my control. It was a pretty helpless and sinking feeling. I decided to be hopeful and positive and try not to think about the upcoming appointment.