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.

52 Weeks of Books: Week 5 - The Littlest Owl

Hi, I'm back. I know it has been forever since I posted but there have been a lot of life changes going on, most recently with my daughter and the loss of her hearing. I am doing this post more as a teaser, to let you know that I am still here. However, I do not plan on returning to blogging full time until summer when I will have a lot of great ideas for what I call "Mommy School." And as you can see my 52 weeks of books is not consecutive but in the end you will still have a year's worth of mommy recommended stories.

The story I have chosen this week is The Littlest Owl by Caroline Pitcher and it is in honor of my daughter L whose spirit reminds me of the main character of this inspiring little story.

I am a sucker for owls and this book has about the cutest ones I’ve ever seen. The Littlest Owl hatches late after his 3 other brothers and sisters. He is much smaller than the others too. But he is confident. Little Owl doesn’t care that he is different, he knows that if he keeps trying he will accomplish the things he wants. This is a wonderful story about perseverance and believing in one’s self... And now I am all teary eyed.

 

Thanks for sticking with me!

Becky

8th Birthday Oreo Class Treat

My middle child "J" just turned 8 and I wanted to come up with a fun snack to bring into his class to celebrate. There are nut allergies in the classroom and I didn't want anyone to be left out. So these little dandies only require 2 ingredients: Oreos and Candy Melts.

OK- there is a third ingredient. For smoother melted chocolate, add a little vegetable oil. See how much better the yellow ones look? I just dipped each Oreo in the melted chocolate and butted two up against each other, adding a bit more chocolate on the joint to keep them connected.

I love my little Pampered Chef icing bottle. It is a pain to clean but super easy to use.

I just piped on the number 8 and put in a cool spot for a couple hours until all the chocolate coating had hardened.

Using my Creative Memories Storybook Creator digital program, I created these fun tags to attach to each treat.

Voila!