Doctors, babbles and bubbles....

It's been a while since I've posted last. I guess I got caught up in the craziness of daily life. I did't know a 10 month old could command so much attention. Sydney has been a busy girl between school, doctor's appointments and playing at the park.

We finally got her test results from the Usher Syndrome after an axious month of waiting. The test came up negative for the 4 of the 6 known types of Ushers they are able to test for. I was able to exhale just a little.

Syd had a couple of colds over the holidays that left her with fluid in her ears. I noticed that she seemed a little less responsive. We went to see her audi and sure enough her typanogram was flat indicating that she has flud in both ears. It took a good three months for it to clear up. After many booth tests and ENT appointments we finally got the good news that the fluid has drained (yeah!). The booth tests actually showed better responses in her right ear than her original ABR which was a little good news. I am glad we didn't have to get tubes, hopefully this won't be a reoccurring problem.

She also had an "in the ear" measure of her hearing aids which I read in a hearing loss magazine should always be done. It was quite the process and her poor 36 week pregnant audi in a 85 degree office was so patient with her. Syd has always been very good about allowing the audi to mess with her ears. It was a big feat trying to get this needle thin rubber tube in her ear with the hearing aid without it falling out. We got it done and she made some adjustments to her aids as a result.

Syd had this puzzling head tilt for the first 7-8 months of her life. It would last for months at a time and would switch from left to right. The PT ruled out torticollis. It seems to have gone away for the most part. But every now and then she will wake up with a head tilt. She will be lethargic and pale, and then vommit. It wasn't until this time around that it is not a stomach virus. This is the second or third time it has occured and seems to happen about once a month. What really concerned me this time was her eyes were jutting back and forth like she was watching the room spin. I thought maybe she was experiencing vertigo. So I looked up the symptoms on the internet and I came across a condtioncalled paroxysmal torrticollis which describes her symptoms exactly. Many times it is a benign condition that can eventually lead to vertigo and migraines later in life (if you want to call that benign...) and sometimes it can be a symptom of a larger condition. So now I am on a mission to find out what is going on. Her MRI came up clear which is a huge relief. We are meeting with an ENT next week so hopefully he can give us some more insight.

On a brighter note. Sydney started babbling about a 6 weeks ago and hasn't been quiet since. She says "baba" "dada", and seems to enjoy babbling at all waking hours which for her starts at 0530 (ughh). It's so great and cute and just love hearing her little voice. The beast is when she gets excited, like when I took her to see the fish at the pet store today. She can't contain herself and screams an ear piercing scream at the top of her lungs. I am surprised the fish were able to take it. People were starting to give me dirty looks, I was torn whether to muffle her a little because I was just happy she was so vocal about it.

Syd has made huge progress in the last couple of months. I do sign with her throughout the day as well as work with her on her speech. It is amazing how much she comprehends. I will verbally ask her to get some books to read, and she will crawl over to her books and pull them off the shelf. This morning I asked her where her foot was, and she grabbed onto it. And this eveing she she did the same for my nose and eyes. I am so happy I have this opportunity to spend with Sydney. Nothing is more rewarding and fulfilling than spending the day blowing bubbles and babbling with Syd.

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.