Fakin' It

Deaf Diary: It Bounces

Shortly after my first son was born, my toddler nephew was over and fell down the stairs. Our next door neighbor was an EMT and we called him over immediately. He checked out my nephew, said he was fine and joked that "kids bounce." Ten years later, I still love to say that, especially to first time parents. What I didn't know is that hearing could bounce. What's been happening since last time I posted? L's hearing has been bouncing. Her left ear (once the good ear) has bounced a tiny bit but has remained in the profound range. Her right ear has been bouncing up to the severe range. The ranges are normal, mild, moderate, severe, and profound. People have been saying "that's great!" But it's not great. It's frustrating. If she is severe she can barely function with a hearing aid and is not a candidate for the cochlear. Also her hearing is not consistent. It can change several times of day. People will talk to her and she will respond and it's as if she is cured. No big deal. Meanwhile, I am coordinating doctor's appointments, 4 in the last seven days plus speech therapy. I am making sure there will be a "Deaf Child at Play" sign in the new neighborhood we are moving to and trying to figure out how to get the house accommodated with deaf technology like blinking lights for the fire alarm. Because when Lucy is not aided, she is deaf, plain and simple. We have gone from wanting to send her to the private Catholic School our boys attend to the public schools to checking out two deaf ed programs in other school districts and back to the local public school. If it sounds as if I am asking for pity, maybe I am just a bit. I think it is so hard to admit weakness as a parent, especially as a mom. I have to stay strong for my daughter, for all of my children. I am not disappointed that I have a deaf child. My daughter is an amazing blessing who can and will accomplish anything she puts her mind to. I am terrified of making the wrong decisions, of not giving her the right support, of not being a good enough mom. When people ask how they can help, I don't know how to respond. I want to ask if they can be me for a few days while I just go to sleep. What L and I have in common right now is that we are both tired. It is so tiring for L to take in the world in a different way. She has to be so much more alert and focused, watching our lips or our signs or the world around her for clues as to what is being said. It's easy for me to listen to the tv and to type this at the same time but for L, listening requires 100% of her attention.

Where does that leave us. The doctors are still pushing for the cochlear surgery, thank goodness. Tomorrow is a 2 hour vestibular test. Thursday is a presurgical check-up plus a special vaccine. Friday is a sedated ABR. They will put L to sleep and check her hearing by reading brain waves. In two weeks we will be at the hospital for about 7 hours meeting with a team of doctors and doing more tests. And of course there will be shorter appointments between now and then. L made out her summer bucket list tonight (which I will post this weekend). I just want her to to have fun between all these appointments, reach her goals, and try exciting new things.

Deaf Diary: Who Pressed the Mute Button?

Because my daughter is hard of hearing, the tv is usually on pretty loud. When one of the kids accidentally presses the mute button, the lack of sound is almost uncomfortable. It feels empty. Is that how L felt the day she lost all her hearing? When she couldn't hear me that morning, I just assumed she needed her hearing aid but when I put it in she still said she didn't her me. I wanted to throw up and am ashamed to say that I panicked a bit. I kept asking L questions, some she answered and some she responded yelling "I can't hear you." Since she answered some questions, I thought she was trying to trick me. I got down on her level and held her by the side of her shoulders. "This is not funny!" I said. "Can you hear me or not?". She responded with tears screaming " I can't hear you! I can't hear you! I can't hear!". I felt even more sick having gotten mad at her and realized that she could do some lip reading. That's how she answered my simple questions. I scooped her up in my arms and hugged her and held her until she calmed down. Even though I really wanted to, I didn't cry. I am sure she felt my fear but I didn't want to show it. Then I dialed the audiologist. Our doctor shifted her schedule to fit us in but we had three hours to wait. It was a miserably long three hours. How would we fill the time if L couldn't hear me?

I didn't have to figure it out. L said she wanted to go outside and play baseball. No words needed for that. The night before we had been at a baseball game. My husband had bought the tickets at a charity auction. We had great seats on the 3rd baseline near the dugout and the pitcher for the Chicago White Sox tossed her a ball at the end of the inning. L was beyond thrilled and couldn't wait for the chance to play with that "real" ball. She was so happy! How could a child that just lost all of her hearing be that happy?

Our appointment lasted 3 hours. L had her headphones on and the sounds were so loud, I could hear them clearly, yet she showed no response. When the Dr. took me in another room to tell me the results, I already knew what she was going to say but it still broke my heart to hear it. Then the phone calls began. The ENT was in emergency surgery but they still called him to come up and see L as soon as he was done. Then calls were made to the Cochlear implant team to come meet L and I. It was a total whirlwind. Meetings, appointment schedules, medical decisions. I am glad that my husband and I had already decided the treatment we would pursue should this day come, otherwise I would have been totally overwhelmed. Well, I was still totally overwhelmed but still felt like I was making informed decisions. Meanwhile, L was happily doing puzzles with the Audiology Intern. When the end of the day had finally come and we were kneeling in prayer, L extended her prayers, praying for more people than I had ever heard her pray for before, never once mentioning herself or her circumstances. I always thought God had given us an Angel in L. Now I know it is true.

Deaf Diary: The History

If you have been following my blog, you have probably noticed that my daughter L does not look much like her brothers. That's because we adopted her from China when she was one. Around L's second birthday, we found out she was hard of hearing and later found out the cause. Bilateral LVAS or EVA- Large Vestibular Aqueduct Syndrome. Genetic testing showed that she also has Pendreds which is associated with hearing loss and thyroid issues. At the time L was only showing a loss in her right ear which we then aided. Most people with Bilateral EVA go completely deaf at some point in their lives and it often occurs very suddenly. Hearing can also fluctuate which is hard to track in a youngster.

About three weeks ago L woke up and could not hear us without her hearing aid which told me she lost hearing in her left ear. We went to our awesome audiologist who squeezed us in right away and it was true. Over night she had lost 100% of her hearing in her left ear. When tested again the following week she had had some slight spontaneous recovery but that did not last. Then last week, she lost 100% of her hearing in her right ear. My daughter went from functioning normally to being completely deaf in 2 1/2 weeks. Aids no longer work because there is no sound to amplify. How do you explain this to a 5 year old who can no longer hear you. We had been practicing sign since we got the diagnosis but not seriously. I also discovered that L can read lips a little bit. Each day is a challenge and we are now on the path to cochlear implants. I will be journaling our journey from here  on out. Please join me but don't judge me.  No decisions we have made or will make are done so lightly.

New Years Challenge: One Year - 365 Photos

Did you think I fell off the face of the Earth? Well I didn't but my computer did. I honestly thought about hanging up my blogging hat to focus on my new Creative Memories business but I just couldn't let go. Therefor I am going to shamelessly plug my CM Website.

So now I am now set up with a new computer and ready to blog. I am also ready to take the One a Day Challenge, one picture a day for the next 365 days. I wish a could take credit for the idea but lots of bloggers out there are doing it!

Want to join me? Just take one snapshot a day of anything you want and don't miss a day. Get the kids involved- I bet they can come up with lots of great photo opportunities for you. Send me a message and let me know that you are up for the challenge!

If you don't have a way of organizing your photos, I have two solutions for you.

1) Memory Manager Digital CD or download which has changed my life!
Features

• Organize your digital images from digital cameras, scanners or CDs using virtual Power Sort Boxes
• Store digital images and journaling with the exclusive Memory Vault feature
• Organize and store your audio (.mp3, .wav, .wma) and video clips (.avi, .wmv, .mpg, .mp4, .mov)
• Image enhancement features such as color correction, red eye, cropping and much more
• Preplan your PicFolio Albums and journaling
• Produce album-ready photos and journaling boxes
• Print your digital images online or at home with the click of a button
• Keep track of printed or non-printed photos using the one-of-a-kind PrintTrack feature

2) Creative Memories Power Sort Box which safely holds and organizes up to 1200 photos

Now is the time to shop! From January 11 thru the 15 almost everything is 25% off. Just click on my Creative Memories Website. 

PS: Don't worry; not all my posts will be Creative Memories. My next post will be about Chinese New Year, Year of the Dragon!

 

Wednesday Wondering of the Mind: Paint Me Pretty

My daughter goes to Kindergarten next year which means it's time for me to go back to work-at least part-time. I am definitely ready after 10 years of being a work at home mommy.

The tough part is deciding what kind of work I should be doing. I don't want to go back to a management position and work long days and 50 hour weeks.

I've looked into my childhood dream job and it's already been taken. I can vividly remember being in the lunchroom in first or second grade and talking about what I wanted to be when I grew up. I wanted to name nail polish colors. I think I have better odds of being a professional football player.

I used to get In Style Magazine which is pretty funny because I am anything but "in style." I would always flip right to the OPI page to see what the new colors and themes were. Then I realized that I didn't have to pay for the magazine to do that. I could go right to the OPI website.

They have a new Muppets collection which is sooo fun!

So, I am debating between FRESH FROG OF BEL AIR  and WARM & FOZZY as my favorites. But DIVINE SWINE is also pretty fine. Which brings me to my next point. I love childish things. Not immature-just things related to children, especially children's literature. I mean that's what I've been doing for the last 10 years and I think that's probably what I'd like to continue to do.

Ok great! Thanks for helping me sort all this out. Now it's time to make the resume. What do you think: Glittery Heart Stickers on the cover letter? or Not?

 PS:   Did I mention that I don't usually wear nail polish? It's just all about the names for me.