Hearing Loss Blog

After thinking long and hard, I've decided that I'm going to use this blog to post sporadic updates about family happenings, random thoughts, etc.

The hearing loss related stuff can be overwhelming and make the fun posts seem trivial. I started a seperate blog at:

http://ourlifesurprise.wordpress.com to discuss our journey raising a D/HH child in a hearing world. If you're interested about specifics along Katelyn's journey, feel free to check it out.

Giving Thanks #4: Second Chances

I grew up with one idea of what life was going to be. My eyes were consistently set on that "prize". Well, while I was busy working towards one thing, life had other plans. 2010 brought the best and the worst into my life. Heartache & lots of life lessons followed. I was determined that this would also be "the end". I truly did not believe I would find happiness. Thankfully, my friend Julie has great friends. Eric was a surprise when I least expected it. A second chance on a family was a surprise to me and I got more than I bargained for. I'm a lucky woman.

Carter's Mountain - September 2012

Giving Thanks #3: The Internet

Seriously though...

Have you ever wondered what your life would be without the internet today? I looked at my mom shortly after Katelyn was born and said, "How did you have babies without the internet?" I was dead serious with my question. The "What to Expect" books contained an overwhelming amount of information and made me question the most horrible things. I decided to only look things up that I was concerned about rather than knowing all of the terrible possible outcomes.

In the past 18 months it has really hit me hard with Jessyca's diagnosis with Celiac and Katelyn's Deafness. I would have extreme difficulty learning information about Gluten Free cooking, American Sign Language, or hearing aids without the internet. Reading books on each individual topic is possible, but would require an extreme amount of patience to feel competent to care for a child based on the newly acquired knowledge.

So here's to you Google... I LOVE being able to "Google" it. This technology is certainly worth being thankful for.

Giving Thanks #2: The ability to be a SAHM

I worked full time for about 2 years of Katelyn's life. After giving birth with her I was fortunate enough to stay home for just over two months with her and then again this past March, I was able to begin being a full time stay at home mom (SAHM). It's great knowing that we don't have to get up every morning and rush out the door. We can have pajama days a couple of times a week and it doesn't make a difference. Play dough, coloring, dancing, and playing house are on our daily agenda. Teaching Katelyn to speak and sign is something else I have the luxury of being patient with while we're at home together. Each day Katelyn amazes me with the things she has learned just watching me do chores around the house. I truly believe this is making her a happier girl. The confusion of being Deaf at day care was too much for her. No one is at fault for it, but it was an environment that became overwhelming as she grew older. Every day I feel lucky that life took a turn and now we are able to be home together. 

With that being said, I wanted to share this video that I captured this AM. PJ + tutu sing alongs are a reason that I am grateful we can be home together. Moments like this are the best! (PS: after the video she had to clean up the gate and was not allowed to keep playing with it. It's not a toy in our house, she was just testing my limits with her)

Giving Thanks #1: Big Girl Bed

Thankful Post #1: Katelyn's easy transition into a toddler bed.

Bed now replacing the crib and gave her a gallery wall & book holder. Kate loves the space!

After more than two and a half years, Kate made the great escape from the crib. In an effort to keep her from hurting herself, I set up her toddler bed. This bed uses the same mattress as the crib, so the only difference to her is the FREEDOM!

In August, we set up her "Big Girl Room". I looked online and asked other moms the best way to transition Katelyn into her new bed. Overall, feedback continued to tell me it would be hard. Lots of waking up with even more "go back to bed"s.

I am thankful that Katelyn's transition has been smooth. Nap time doesn't always go well, but the one that counts is night time. Night time is just fine. The only drawback is that she is waking up a bit earlier. I am just thankful she made it two and a half years years sleeping 12 hours at night. Sleeping only 11 hours now won't kill me.

She loves her big girl room. The second part of this post that I am thankful for is the ability to give her a bedroom. With Eric's girls we have 4 children in our 4 bedroom home. Luckily, Jessyca and Sydney wanted to share a room and were already sharing when we moved into this house. Katelyn got her own room. Most children who are fourth in line don't have the same fortune.

She's certainly starting to look like a little girl and losing her baby look. Mixed emotions! Couldn't be happier about how much she loves her room now. Thankful is an understatement!

First Night in the "Big Girl Bed" couldn't be happier!

Giving Thanks

Many of my Facebook friends are writing something they are thankful for each day this month. I am not one to remember about posting something each day. However, I would like to share experiences, memories, and triumphs we have overcome in the last few months during this month.

I am thankful that I have been able to have these experiences and memories with my family. We have been through ups and downs but in the end we are able to get through life together. This past year has been a great one. So many things to be thankful for that I could never list them all in a blog post.

I look forward to sharing the past few months with you!

Escape Artist

Today is a day I've been dreading. The kind of day that every parent wonders about and ponders. Katelyn finally escaped her crib. Nap time is a rough time of the day for us. No matter what the routine is, she does not want to leave the excitement of the day to take a nap.

As usual, she screamed and wiggled the entire way to her crib. I put her in bed, gave her some stuffed animals and some books, and left the room. A minute or two after, I heard a thud. This thud was followed by running footsteps and the bedroom door opening. I walked back upstairs knowing exactly what I was about to find. With a stern face & saying "no", I had to crush the excitement of the little girl who giggled in delight when she saw me. She was saying "look what I did!" with excitement and I am feeling dreadful. I put Katelyn back in her crib with a gate in her bedroom door. Luckily, Kate stayed there for the remainder of nap time.

Now the fun begins. Luckily, I already have a toddler bed. I spent the afternoon looking for toddler bedding sets and thinking of ways to decorate/rearrange her room to be a "big girl" room. While I am still sad that she has clearly outgrown the crib, I am now looking forward to this next step of her toddler stage.

If I could only get her on board with potty training, I'd be in heaven!

Olympic Opening Ceremony

Did you watch the London Olympic's Opening Ceremony? We did. Rarely is Katelyn allowed to stay up past 8pm, but this was a special exception. With the ceremony occurring once every two years (if you watch the Winter Olympics too) it was a special treat to have all six of us watch the ceremony together. The night was full of commentary about the outfits, songs, flashing lights, etc. Each girl had a different favorite part. 

Eric, Jessyca, Sydney, and Katelyn all sharing the couch during the ceremony.

Imagine if you could not hear the ceremony. The wonderful thing about the event is the lights and dancing are visually stimulating. Lucky for us, Katelyn's hearing aids are making a big difference and helping her understand her surroundings. Loud drums and lots of bass moved Katelyn to do lots of tribal-like dance moves. Although the photo is of her sitting on the couch, she was barely able to contain herself. She LOVED the ceremony -- well the portion she was allowed to stay up for anyway. 

It was wonderful to be able to sit down as a family and experience something with all of our senses. Nights like these are the ones that make all the hard work of raising children worthwhile. 

Sign A Day - Olympics

Rather than try to explain the sign for "Olympics" through text, I posted the video below. It is a simple sign, however, explaining it through text would over complicate things. We are using this sign around our house right now. How about you??

Groupon for a Cause

Doesn't everyone like a good deal? I know I do! Each day I receive emails about things that are deeply discounted. Each day I scan through them to see if they are relevant to our current life. I have saved on oil changes, Christmas gifts, and camping sites to name a few. I had not seen a discount site offer a discount on donations until now.

Groupon is offering $10 for a $20 donation to the John Tracy Clinic.

I recently learned of the John Tracy Clinic through the book Choices in Deafness that I wrote about last week. It is a clinic based in Los Angeles that works to reach out and improve the surrounding community by offering hearing loss services. They provide a preschool, do hearing screenings, and have online courses for parents that do not life in the LA area.

Since I do not live in California, I am taking advantage of their services with the online parent course. It is full of information about options you have as a parent of a Deaf child. Courses are tailored to the age of the child, and there are people available to chat and answer questions as well.

Basically, they do great things in LA and try to extend the knowledge base as best they can through the internet. I really appreciate their efforts.

So bravo to Groupon and Chris Malling and his team at Colliers International for making this happen!

CLICK HERE if you would like to donate $10 toward the purchase of an Audiometer deal ends on July 29th.

**Disclaimer: None of the above links are in association with my Groupon account, nor will I receive anything for your donation. I just want to share about a big company doing a great thing!

Sign A Day - Book

Lots of ASL signs are based on common sense gestures. Luckily, "book" is one of them. We read books all the time! "Book" is one of the signs that can help us get Katelyn what she wants while eliminating the frustration that leads to tantrums.
The American Sign Language sign for "book" is made by placing both of your palms together just in front of your waist. You open your hands on a hinge to finish the sign. Just pretend that your hands start as a closed book and move on to an open book. Easy as pie!

Photo Courtesy: http://www.lifeprint.com/

Book Recommendation: Choices in Deafness

Have you heard of the book "What to Expect When You're Expecting"? If you have then you'll know that that series of books is considered a parenting bible. I began reading them when I was pregnant with Katelyn but quickly put them down. I felt as if they were turning me into a worrier and an alarmist. They were so thorough that I began to worry if every symptom I felt during pregnancy was connected to one of the horrible diseases/conditions they were making you aware of. Many people do not experience theses books in the same way, but once my mindset had set in, there was no stopping me from worrying, so, I put down the books.

Now, I have found a book similar for parents of Deaf children. "Choices in Deafness" takes you from the process of the initial hearing testing all the way through high school graduation. It talks about the many disorders related to deafness along with the teaching strategies for Deaf children. Although no two deaf children are alike, it strives to cover the entire spectrum to give a broad approach to possible solutions.

Book available for purchase at Amazon.com

There were two chapters that I knew did not pertain to Kate, so I skipped them. Knowing myself, they would bring out the worrier in me. Luckily, I know Katelyn's condition is caused by a genetic abnormality, not a symptom of a larger health issue. This has helped my worrying self stay at bay. 

Overall, after completing the book, I feel much more able to research her hearing condition and be a more engaged parent. Each chapter contained several testimonials from real parents telling the story of their journey with their children. It felt good to know that we are not alone. This book talks about hearing aids and cochlear implants as well, making it relevant for any parent/family member that has a child with a hearing loss. 

This book was recommended by my Aunt Ruth who learned about it from a friend. After searching the internet, I have had difficulty finding resources for parents of children that have hearing aids. Cochlear implants are much easier to research. It was great to read this book and get the information I had been looking for all in one place.

Now I am armed with a baseline of knowledge to start our journey together. Hoping this recommendation can help someone else as well!

Sign A Day - Break

With the untimely "break" in my laptop's screen, it was time to learn the word "break" -- there is no sign for broken because it is just a past tense of the word break.

Break is made by forming your hands into fists. Place your fists side by side in front of you with your index fingers and thumbs resting against each other. Then pull your fists apart and down as if you are snapping a twig. This is just one motion and stands for "break". See the illustration below for further explanation:

Photo courtesy: http://www.lifeprint.com 

Bed Jumper

Katelyn loves to jump. When she was an infant she spent hours jumping in her doorway jumper and her exersaucer. Now she jumps around rooms, jumps in place, jumps into your lap, and LOVES to jump on the bed.

Her jumping has always been over the top, but never a real issue until today...

The picture above is my laptop. You can see that the screen is completely ruined. Thankfully, I have a 3 year accidentally warranty to cover any and all parts of this machine. Unfortunately, it is still a frustrating issue.

So, what is the connection between Katelyn's love for jumping and my broken laptop? It is cause and effect. I carried my laptop upstairs and set it on my bed (lid closed). Katelyn was playing in her room and I used the bathroom while I had a moment of peace. I came out to find her jumping on my bed. I told her to get down and we went to play in the family room. Hours later, I put her down for a nap and open my laptop. Serious bummer.

I did learn my lesson on putting electronics on anything other than a table or countertop! Luckily, we have another computer so I am not completely without. Mine should be fixed in the next week or so. Life with a 2 year old is never dull...

Sign A Day - You're Welcome

Although I have not been faithful to the "Sign A Day" project until just recently, Katelyn and I have been progressing in our learning ASL. So I have posted about the following words:

• Duck
• Boat
• Music
• Dad
• Rain
• Mom
• Help
• Bath
• Please
• Thank You

Similar to other languages, ASL instruction is typically done by topic. That strategy sounds wonderful for me, but being a parent trying to learn and teach simultaneously, it is easier to teach Kate words she needs to communicate. Rather than going by topic, teaching on a need basis has worked well. This has led to an interesting spread in the types of words we have learned. 

Today's word: You're Welcome

Although in English it is Three words (or a contraction and a word), there is much controversy over what the sign for you're welcome is. Most people say there is not a sign for it. Therefore, we will not be using "You're Welcome" as a part of our ASL at this time.

The reason I am sharing this, is that I was misinformed that "Welcome" could be used to express "You're Welcome" but it cannot. So, don't fret that you don't know how to tell someone "You're Welcome" when they say "Thank You". Just smile, thats all you need to do :)

Interesting Article

There are an infinite number of ways that hearing can be lost. While Katelyn's was not preventable, I found this article interesting:

http://www.parents.com/baby/safety/toy/kids-toys-causing-hearing-damage/?page=1 

It discusses how most children do not play with toys correctly and that many popular children's toys can damage a person's hearing. The thought had never crossed my mind.

Just wanted to share the information!

Sign A Day - Duck

The American Sign Language sign for "Duck" is a variation of the sign bird. The difference between "duck" and "bird" is minimal. With "bird", you use only your pointer finger and thumb. With "duck" you use your entire hand.

For illustration purposes, the graphic below is for "bird". Don't forget when saying "duck" you use all four fingers on top and quack twice with your fingers and thumb coming together to represent a duck's beak.

photo courtesy: http://www.dummies.com/how-to/content/how-to-sign-songs-with-your-baby.html

Duck is made by placing your right hand to the side of your mouth with your thumb parallel with the ground and your four fingers closed against your thumb as illustrated above. You open and close your fingers/thumb twice in order to "quack" like a duck.

Sesame Place

Have you ever stood in line at an amusement park with a 2 year old? Until last week I hadn't either. I cringed at the thought of entertaining Katelyn in lines. Our waits to check out at the grocery store typically go horribly wrong. I couldn't imagine how she would do watching something fun while waiting for more than a minute or two. 

Kate, Mom, and I with Bert & Ernie - July 2012.

Last Monday we visited Sesame Place for the day. I thought Katelyn might last 3-4 hours before total meltdown time. My mom didn't tell me, but she was expecting about an hour or so of fun before we would need to leave. Katelyn shocked us all. She made it from 11am until 5pm. Six hours total. Sesame Place is half water park/half carnival rides. We started in the dry portion and then moved on to the water park in the afternoon.

The first ride had a rough ending. She had never had to leave something so quickly. With the language barrier we still experience, plus being 2 years old, she cried & cried. The more rides we went on the better she got. Although she was antsy to get on, her behavior got better and she knew there was something else to look forward to as the ride ended. Tears did not continue. In the end, this is the #1 reason I am happy we took her. Patience is key in life. Being an amusement park primarily for toddlers, this was a great place to teach this lesson since everyone (at some point in the day) had a crying toddler as well. She learned more about patience at Sesame Place than I can teach her at home.

 Just before visiting the water park we were lucky enough to see Bert, Ernie, and Abby Caddaby. Seeing the characters in real life was surprising and exciting to her. We also saw a parade that included all of the characters from the show singing and dancing down Sesame Street. She had her typical concerned/overwhelmed face on the entire time. With sensory overload, many times I would expect a child to be laughing and dancing, Kate has concentrated and statue-like body language.

Kate's favorite was the water park. My Aunt Kathy and cousin Sam went with us too. Sam was great with Katelyn in the water park. They went all over the place. He let her explore, and always saved her when necessary -- she knows no limits sometimes!

Katelyn's favorite ride -- Rubber Ducky

Her favorite ride in the park was the Rubber Ducky water ride (seen in the picture above). All five of us sat in a huge tube that went down & around in a big water slide. Lots of splashing and big dips. Being over 8 stories high at the top I wasn't sure how she would do. We practiced the sign for duck saying "quack quack" while doing the sign. After we finished the ride, she tried to walk back to the entrance. For the next hour or so before we left the park, she kept doing the sign and saying quack each time she saw it. I love when she gets excited enough to initiate signs and language all by herself. 

Kate Splashing around in the 1-2-3 Count Pool

Overall it was an amazing day. So proud of my little one for learning so much and having fun while doing it!

Blog Redo

What is the best time for a redo on your blog? Since I can't think of one, I decided now is the time to give it some sprucing up. New background, new email subscription capabilities, and a new header.

The blog is now officially dedicated to my thoughts about living life with our blended family. Sometimes the posts will be about Katelyn, sometimes about deafness, and other times about family outings. I do plan to continue the sign-a-day (for real this time) in order to push myself to keep learning. With Eric's daughters being with us half of the time, you will still see more posts that have to do with Katelyn due to the time we spend with her, but the other three girls will be included as well. The one thing that will be happening from now on is at least one post per day. Be sure to sign up for the email blog posts in the upper left hand column to follow along!

Here's to continuing to move forward and embracing our new life!

Music Lover to the Core

Can you imagine not being able to hear your favorite radio station? Last weekend we were at a family reunion in Pennsylvania. Katelyn was out at the pool, therefore she couldn't wear her hearing aids. My aunt has outdoor speakers that music was being played through. As an experiment, I took Katelyn up to the speaker and let her feel the vibrations. She instantly began to dance. Every so often she would touch it again or get very close to be sure there was still music. I really wish I had the sensitivity to vibrations that she does. It is clear in these moments that she experiences life in a different way than I do.

The next day, my cousin Jacob showed her his drum set. She had been quite curious about it, but no one had shown her how it worked. She was in heaven.

Jacob and Katelyn, July 2012

Aaron & Katelyn on Piano and Jake on Trombone & Drums with Sam looking on.

For about an hour or so, Jacob and Aaron played the drums, the piano, and the trombone with her. She ran from instrument to instrument while dancing in between. I cannot wait until she is older to see where her interest in music takes her. Will she be in the band? Work for a music group? Or just be a dancing queen? Only time will tell!

Sign A Day - Music

The American Sign Language sign for "Music" is made by opening your left hand flat and extending your left arm from your body in a curved "U shape". Using your right arm, open your palm flat and wave it above your left arm following the curvature of the arm, but without touching it as seen below:

Photo Courtesy of  http://mykidentity.com/

ASL vs Hand Gestures

How do you teach yourself a new language? I have been struggling with that recently. ASL is helping Kate to communicate with us. Her delay in speech is making it difficult to determine what she is trying to say. By saying words and doing an ASL sign we are able to give her a positive response.

The biggest issue? Real "American Sign Language" signs vs. our own made up hand gestures. It is EASY to make up a hand sign for something and have it be understood. However, since we are attempting to learn/instruct Katelyn in a new language the correct signs are important. One sign I know I have taught her incorrectly is "bath". I do a sign where a cross my arms as if hugging myself and then rub my hands up and down on the top portion of my arms. The true sign for bath is two fists held parallel on your chest. You motion them up and down to indicate scrubbing yourself for "Bath" as seen below:

Photo courtesy of   http://www.babysignlanguage.com/dictionary/b/bath/ 

At this point, we do not know any other children or families using ASL. However, I want Katelyn to have the opportunity to connect with others if she chooses. Using the correct ASL hand signs will be crucial to her communication with those who hearing aids do not help. In addition, if she goes somewhere with a large crowd (such as the Monticello Naturalization Ceremony) and has a hard time hearing the ceremony due to background noise, she will be able to follow along with the sign language interpreter standing to the side of the stage.

Adults do not learn languages as rapidly as children do. I thought Kate did not know many signs until this week. She has understood many gestures and signs that she would not perform until recently. This made me aware of the importance of teaching her the correct ASL sign from now on. Have you learned a new language as an adult? How did you make the time for it in addition to your every day activities? Do you have any helpful hints? I would love to hear from you!

Sign A Day - Boat

On our way to the boat, I realized we did not talk about a boat using a hand sign. We had just used the sign for fish, to indicate the lake. Luckily I had my handy iPhone sign language app and found the proper sign. Katelyn now knows the sign for boat.

The American Sign Language sign for "Boat" is made by cupping both of your hands just in front of your chest. You move the hands forward and then down twice as if doing the motion that a boat would when moving through the water as seen below:

Photo courtesy: http://www.lifeprint.com/asl101/pages-signs/b/boat.htm

Katelyn the Dare Devil

If you know Katelyn, you know she is a kid with no fear. Celebrating a belated Father's Day, with Tim, proved just that. After a day of swimming at the beach, and staring at a dark cloud overhead, we concluded that the storm had passed us. It was time to get on the boat.

Kate, Sydney, Brandi, James, My Mom, and Tim all went on the second wave of boaters since we couldn't all fit on at the same time. We drove around and then went out on the tube. I decided it was time for Kate to have her first tubing adventure.

As we got farther from the boat I was unsure if she was enjoying the experience. I instructed her to hold on tight to the handles, but otherwise she just had a straight concerned face. Her lack of facial expression when she is being stimulated is hard to read. She often looks unhappy when she is just concentrated and attempting to figure out the world around her.

At one point, she gave me the sign for "all done". Tim stopped the boat and just as we were about to come in, she says "Ready? Set? Goooo!" which means she wants to do it some more. Silly girl.

Overall, she loved it. Glad we figured this out early so she can enjoy it multiple times this summer!

Father's Day 2012

Yesterday was Father's Day. This is not a holiday I have had to celebrate with a significant other. All new to me. So... what do you do for your fiance with all 4 kids for Father's day? You make a video...and then go on a family hike.

Here's the video:

Our family hike was to Jones Run Falls in the Shenandoah National Park. This was a brave 3.4 mile hike for our first time hiking and for taking all 4 kiddos. Although Katelyn fought with us (and lost) about what she was going to do and where she was going to hike, Mikayla felt faint, Sydney said she was tired, and Jessyca was just determined she was going to be the first to the end -- I would call it a success. 

Eric loved the video (brought a few tears I think) and then had a good time spending the day with us on our outdoor adventure. We have decided that maybe hiking is not our thing at this point with a challenging two year old. Maybe next year?? 

At least we enjoyed the beautiful scenery....

Mikayla, Kate, Me, Jessyca, and Sydney looking at Jones River Falls

Eric & Sydney in front of a Mini-Waterfall

Sign A Day - Dad

Being that we celebrated Father's day this past weekend it seems fitting to have our next sign be "Dad"


Dad is made by opening your hand flat into a "5 shape" and bringing it up to your forehead. Place the tip of your thumb on the middle of your forehead as seen below.

What is a Father?

According to www.dictionary.com:

fa•ther [fah-ther] (noun)
1. a male parent.
2. a father-in-law, stepfather, or adoptive father.
3. any male ancestor, especially the founder of a race, family, or line; progenitor.
4. a man who exercises paternal care over other persons; paternal protector or provider: a father to the poor.
5. a person who has originated or established something: the father of modern psychology; the founding fathers.

Some of the definitions above are not what people typically think of when "Father's Day" pops into their head. Oddly enough, neither Katelyn or I have a father in the traditional sense. Both of us have "fathers" that are not involved in our life in any way, shape, or form. Father's day has never felt like a holiday to me. Mother's day was always celebrated, but Father's day was not the same. With such a high number or divorces in America I'm sure some of you feel the same. Many fathers are awesome even after the parents separate, but unfortunately this is not the case for Kate or I.

In a way, we are luckier.

The men that act as the Father in our lives choose to be there. It is not a natural thing for them. They, at some point, made a conscious choice to be involved in a fatherly roll on a daily basis.

Tim, my step-father, entered my life when I was 12 years old. Although I don't call him Dad, I constantly refer to my "parents", meaning Tim & my Mom. He still continues to help me and be involved in our lives on a regular basis even after I left the house. He has been the man that helped me get to football games in high school, picked me up when my car broke down, celebrated graduations, the birth of my daughter, and is an involved Grandfather as well. Tim has been there in all the ways that count as a Father. For that, I am truly grateful.

Next weekend, we are all going out to Lake Anna with my parents and Tim will get to show his boat off to Eric and his girls to celebrate Father's day. Looking forward to making these memories with Kate and all three of Eric's kiddos as well.

Happy Father's Day Tim!!

Tim, Mom, Myself, & Kate in February 2012

Another Audiologist Check-Up

On Wednesday, we visited our audiologist Dr. Deb Hildebrand at UVa Audiology. With our recent hearing aid break (and lost & found aid) we had concerns about all the "whistling" we were hearing from the aids Katelyn was currently using.

The Virginia Department of Health has a loaner bank which we were borrowing from initially to see how the hearing aid process would work for Katelyn before making the investment ourselves. Borrowing from the loaner bank is an amazing option for us, but left us with no choices on the make or model of the aids Kate wears.

I had no idea that there could be a huge difference. Until now...

Seeing the broken aid, Dr. Hildebrand wanted to exchange them due to the extra feedback Kate was getting. Luckily, she already had a pair in house. The loaner bank hearing aids were from Oticon, but the new hearing aids are Phonak brand. Like I said before, I didn't expect much of a change.

When Katelyn put them on, there was a clear difference. Her toddler phase of constant movement was creating whistling sounds all the time. The aids had been jostled and would become loose. The new aids have a stronger feedback control. We hear very little feedback. The profile is also slimmer which keeps them attached to her ear better.

We have only had the new pair a couple of days, but so far she has only taken them off once. And that was to show displeasure to me, not due to an annoyance from the aids themselves. I am hopeful that this new pair will be even better for her.

The more she wears them, the more she learns. The more she learns, the more she will understand. Hopefully this understanding will lead to more speech and happier days for little K and I. Keep the prayers coming...

Country Baby Girl

It is safe to say that Kate was oppressed living in the City. Now she has a grassy, fenced in, back yard there is nothing more she likes to do than get dirty. 

Recently we went to the Chile's Peach Orchard and went strawberry picking. She loved every minute of it. At points she was shoving strawberries into her mouth faster than she could pick them.

Her little bucket only had one strawberry remaining when we left. All together I was able to pick 7lbs and even came home to make home made strawberry jam. Canning it makes it possible to enjoy our strawberry picking adventure throughout the year. We're lucky to have a orchard near home that is small enough where Kate can roam freely and be the country girl she is. I love days like this with her.

We Lost a Hearing Aid!

Last Friday, I began a new bible study with the women of my church. The meeting is being held at the local library while our kids are with sitters at a church building about 1 mile away. Typically, when I leave Kate with a sitter/mommy friend, she does not bother her hearing aids at all. This would not be the case on that Friday. When I left Katelyn, she had BOTH hearing aids. When I picked her up, she did not. Several older kids and teenagers helped me look all through the kids play area, but no luck. I decided that it would be best to say a prayer and wait. Patiently wait. On Sunday, I told our Pastor about the lost hearing aid in case someone found it during the course of the week. Feeling less than hopeful, I decided to give it one week before calling it officially gone. Tuesday night I got an email from my bible study leader. The hearing aid had been FOUND! It is officially back with us. The expense of replacing the loaner + buying Katelyn her own permanent set, was not in our plans right now. Thankfully, this has been put off for a future day!

Truly Inspiring

As you all are probably aware from reading this blog, kids do not like to wear their hearing aids. Some days are better than others, but in the end, kids just want to be like everyone else. Here is an awesome story about a little boy and his journey. It's awesome that a company like Marvel would reach out and help this little guy...




If the above video is not working for you. See it at: http://www.myfoxboston.com/story/18597572/2012/05/22/marvel-comics-creates-superhero-in-honor-of-nh-boy
Thanks to my Delta Gamma Great-Grandlittle Erin for sharing this with me!

Our First Break

It's insane how something so expensive can be left on a 2 year old's head 12 hours a day. Thus the breakage issues. Today was our first break. Don't know when or how, but when Kate took off her hearing aids today and handed them to me, the volume button was missing. I didn't notice it at first, but if you look carefully, the left ear has a gray toggle switch and the right no longer does. You can see the inside of the aid now. I immediately called the audiologist and they will look at it on our next appointment June 6th. For now, electrical tape will have to do! A little ghetto looking, but at least they still work!!

Enlightenment

Last week, I had an meeting with the Fluvanna County Public School system to set-up speech therapy to begin in August for Katelyn - since she is not eligible until next year. Katelyn went to a friend's house for a play date. The meeting went well and I went to pick Kate up. Immediately after walking in, Kate takes her hearing aids off and hands them to me. She had not touched them the 1.5 hours I had been gone. ::sigh:: SUPER frustrating!

While talking to the mom of Kate's friend, a song from the Fresh Beats came on the television. Kate's friend began dancing along. Katelyn ran over, followed her friend's eyesight and landed her eyes on the TV. Immediately, Kate ran over to me and pointed to her ears. She actually ASKED to have her hearing aids put back in! She realized she was missing out on the music being played by the band. While this may not seem like a huge deal to some people, it's a complete breakthrough.

She has yet to repeat this request, but it is good to know she realizes the benefit of the hearing aids! All I can do is pray and praise the baby step successes.


UPDATE: Within an hour after I published this post, Kate was watching Sesame Street and one of her hearing aids came off. She brought it to me while attempting to put it back in her ear unsuccessfully. Making strides every day :)

Sign of the Day - Rain

Recently the weather in Central VA has been filled with lots of precipitation. Katelyn loves it, I am apprehensive. The hearing aids make me nervous because they can malfunction in the rain, therefore she has to take them off when going outside on rainy days. Kate always walks outside and looks up with a questioning look. Recently she has begun pointing to the sky and putting her hands up to ask me "whats that?". Today is the day I have decided to try and teach her a weather sign. "Rain" is our beginning. I don't really think she got it, but it was worth a shot.

Rain is made by opening both of your hands flat with curled fingertips into a "5 shape" and bringing it up to your eyesight. Your palms should be facing the floor. This is an action sign. You have to bring your hands down to your waist, while stopping intermittently to represent rain drops. See below for a diagram:

Sign of the Day - Mom

With Mother's Day happening this past Sunday, the ASL sign for "Mom" seems appropriate.

Mom is made by opening your hand flat into a "5 shape" and bringing it up to your chin. Place the tip of your thumb on your chin as seen below.

Mother's Day 2012

Photo by Michael Campbell
DESCRYstudios

Sometimes I have unrealistic expectations for what holidays should be. Birthdays are usually themed with decorations to match, 4th of July has an abundance of Red-White-Blue food & attire, Easter should have cute baskets and egg hunts. Not everyone does these holidays the same. Therefore, I have been disappointed in my adult lifetime on a regular basis due to a lack of excitement or "to-do" about certain holidays.

Thus, I set the bar low of Mother's Day 2012. My first two, 2010 & 2011, I worked the entire day and it was less than glamorous. Dinner cooked for me both years, but with a infant there's not much else to fuss about when you are at work all day. 

Mother's Day 2012 started off differently. I received my first Mother's Day gift last Sunday. Eric's daughters picked out a pair of earrings from a vendor at the Montpelier Wine Festival. Earrings fit me perfectly and the girls were too excited to wait a week to give them to me. I wore them all day yesterday and they noticed with big smiles on their faces. 

Yesterday began with breakfast in bed from Eric. Katelyn's gift was that she slept in until 9am. Although I think her sleeping in was a coincidence, an extra hour of peace to eat a hot breakfast in bed was enjoyable. We then went to church at Calvary Chapel Fluvanna. Pastor Steve gave a sermon based on Proverbs 31- what being a woman should be about. The sermon reconfirmed my decisions to stay at home to be a homemaker and mother. 

Although the day was not about gifts, they were perfect. I received a blueberry bush and a photo album from Katelyn. Recently I have been talking about putting a garden in our backyard and Eric gave me a blueberry bush to start the project. The photo album was from a secret photo shoot my Mom, Brandi, and Brandi's friend Michael organized. Michael shot many awesome photos of Katelyn at Darden Towe Park (see his facebook site here: https://www.facebook.com/descrystudios).

The day ended with a family dinner at my Parent's house. Tim made a big BBQ rib dinner for all 10 of us. Perfect way to end the evening. Although I set the bar low for Mother's Day this year, I feel I underestimated the people that are now in my life. This Mother's Day was exactly what I thought Mother's Day should be. Perfect day.

Sign of the Day: Help

Katelyn is 2 years old. Meaning, I am there to assist in almost every activity she is interested in. Despite her determination, her height and strength often prohibit her from doing the tasks she wants without some help. The latest sign/speak combo we are working on is HELP.

Photo Credit: http://mykidentity.com/?p=309  

Lift your hands together in an upwards motion.

First, you form your right and into the sign for the letter A. 

Next, open your left palm and place the A on top. 

This sign varies with how you lean the help motion. If you want someone to help you, then start the sign farther away from your body, and as you lift it bring your hands closer to yourself. 

Persistence is Paying Off!

Sometimes I do things with Katelyn & her hearing aids wondering to myself, "is this going to pay off in the end? Or is this a lot of effort for nothing?". I know patience is key and will pay off in the end. If you have experienced a Katelyn sized frustration tantrum, then you know why I would consider quitting instead of standing my ground.

This week magic has happened...

After one month of hearing aids, Katelyn is attempting to communicate in a structured way! For key words and phrases I sign and speak simultaneously. My hope was that she would also do both so I can tell what word she is trying to say. SHE FINALLY HAS!! It is relieving that she can tell me she wants to "eat", "drink", "up", "down", and has a few other words such as "please", "thank you", and "ready, set, go!". 

Currently, when she attempts to speak it is not clear what she is saying without a sign accompanying it 90% of the time. Many sounds come out the same. Speech therapy will fix this with time.

After this 6 month long frustrating journey, it's nice to see the hard work beginning to pay off!

When I Grown Up, I Wanna Be Famous!

Being a stay at home mom has allowed me to experience so many new things with Katelyn. One of my favorites recently was the Dogwood Parade held in April. Typically, I would have to work making a parade impossible. This year that wasn't the case. It was awesome to see her little smiling face. She LOVED the horses...

Although the rain had me a little worried, she waved throughout the entire thing. She's overcome some amazing obstacles. I believe with her determination and interest in being the center of attention, she may just become famous. It's also a good thing she could wave almost non-stop for an hour. 

These are the special memories that make all the difficult daily tasks worthwhile.

"Foto" Friday

With all the serious posts I've put up recently, I wanted to share a happy photo of Kate at the Discover VA Wine Festival a couple of weeks ago. She LOVED this train. Rode it over, and over. No need to hear -- just feel the bumps and see the surroundings. She was in heaven!

Answers...Finally...

On April 9th, Katelyn went to see Dr. Wilson who is a genetic doctor. We discussed possibilities of genetic causes for her hearing loss. He informed me that it was often the case that we will never find an answer after testing is exhausted so I should do what feels comfortable both for me as a person, and me financially.

That day, we decided to start with the "small" genetic test called Sound Gene. This testing process required a blood sample and took about 2 weeks to get the results. It analyzed her DNA for the most common reasons for hearing impairment among children.

Last Wednesday, April 18th, they called with the results. Katelyn has a genetic mutation that caused her hearing loss. The results say...

"Katelyn has two copies of a mutation that is denoted '35delG' in the GJB2 gene that alters a protein called connexin 26. This is associated with nonsyndromic hearing loss and deafness, DFNA3, which is characterized by childhood-onset, progressive, moderated-to-severe high-frequency sensorineural hearing impairment. Affected individuals have no other associated medical findings. Connexin 26 mutations are thought to be the most common genetic cause of hearing loss.

This form of hearing loss is inherited in an 'autosomal recessive' pattern, meaning that an individual with two copies of the mutation will have hearing loss. These results suggest that Katelyn probably inherited one copy of the mutation from you and one copy from her father, meaning that both of you are 'carriers'."

Basically, it was inherted as a recessive gene from both her father and I. Now we are both aware of being carriers. The only future concern would be if I were to have another pregnancy with another carrier (since clearly her biological father and I are not having other children together) there is a 25% chance of having another child with a hearing impairment.

For much more in-depth information see the following link: http://www.ncbi.nlm.nih.gov/books/NBK1536/

May 7th, we have a follow up appointment to discuss the results on more of a person level, rather than all the medical speak. I hope to more fully understand the abnormality and how it effects Katelyn's future personally as well as reproductive future. I am concerned that this makes her future children very high risk for being hearing impaired as well. However, this is out of my control and something I cannot (should not) be worried about.

Overall, I am quite pleased to finally have an answer. It was repeated in each previous doctor appointment that it was possible I would never know why she has a hearing loss. Although this answer doesn't change Katelyn's condition, it does give the adults, doctors, and caregivers in her life a sense of ease. There are no new symptoms to look out for. Anything else that may come along in her future will not be related to her hearing loss. She's just a little girl who inherited a set of recessive genes that caused her hearing to be severely impaired. It is what it is, and we are learning to make the most of it. She's still amazing, hearing or not hearing

Hearing Aids: A New Beginning

Katelyn got her hearing aids on April 6th. Many people have asked how she is doing. Overall, I would say she is doing well with the adjustment. Her instant reaction was silence. She stood silently in the Audiologists office and held my legs. Katelyn seemed in awe and quite perplexed by the new things she could hear. After about 30 minutes of exploration, she was blowing bubbles in the office. At one point, something fell off the chair behind her onto a carpeted floor. She heard it fall and turned around. This is how I knew they were working. 

As the day went on, there was a power struggle between Kate and I. She took her hearing aids off several times and had to be disciplined. This is the non-exciting part of the hearing aids. By the end of the day, they are painful. Similar to wearing new glasses or a headband, the skin spots become sore from the movement. After dinner, whenever her hearing aids came off (or were pulled off) she covered her ears with her hands to try and prevent me putting the aids back in.

The biggest misunderstanding is that although she is physically 2 years and 2 months old, her language development is that of a newborn. Words that have been spoken to her in the last two years have been muffled and distorted. What she knows as her name without her hearing aids, does not sound like "Kate" with her hearing aids. This brings us back to Day 1. Many years of speech therapy are ahead of us.

Other frustrations include the feedback noise when the hearing aids are bumped into. As Kate rubs her ears or jolts the hearing aid microphones around while playing, a horrible noise occurs. The noise sounds like a microphone when it is first turned on in a concert hall near a speaker. It's an extremely loud screech. This is also causing unhappiness and headaches for her.

We are still moving forward with sign language due to the fact that hearing aids cannot be used at the pool, in the bathtub, a water park, the ocean, etc. So far, tantrums have been the same in number. I am hopeful that as we all explore the new hearing world together, that she will begin to understand more each day and the tantrums will subside. Below is a photo of Kate with the hearing aids on. 

Please continue to keep her in your prayers!

New ears!

Life...

So again, life has gotten in the way of doing the "Sign a Day" project. My last day of work was this past Friday. That evening we packed up the car in a hurry to drive to Macon, Georgia. A ten hour car ride overnight with 4 children is always interesting. We spent 5 days visiting Eric's home town and helping his mother as she was released from the hospital after elbow surgery with complications. I also had the pleasure of a surprise visit from his brother, Jason. Lots of sightseeing, history lessons, and reminiscing of the past. Needless to say, this trip had left little time for blogging or surfing the internet. Now we are home, back to business as usual.

Today is the day Kate gets her hearing aides so keep your fingers crossed! Will update soon....

Communication is Key to Happiness

Lately I have been trying to wrap my head around the fact that I have a Deaf child. This is more than just hearing aides, sign language, and silence. It is an inability to communicate with one another, a frustrated toddler, and a lot of temper tantrums. It causes outbursts over tiny things. Some of you are thinking "yep, sounds like terrible twos!" and I am sure that is some of what is going on. However, it is amplified because we have gone so long without being able to clearly communicate. She is unsure of many things I try to communicate, and I miss 90% of her requests. Katelyn has begun grabbing my hand and leading me to things, but this is only getting us part of the way there. Most requests are still unable to be deciphered.

Unfortunately, there are not a ton of resources available either. Hearing impairment / deafness is different for each person making it difficult to get a clear response on a communication management method. Signing is one way we are trying to bridge communication. Hopefully the hearing aides will make a huge difference. April 6, 2012 could be a huge day for us. Please keep the prayers coming that these hearing aides will amplify the hearing she has left in a way that she is able to understand the world around her.

If any of you have suggestions of deaf playgroups, meeting other families who have deaf children, or sign language classes in the Charlottesville, VA area, please let me know! I would really appreciate it!

Sign a Day Project: Please

Being Deaf is not a reason for Katelyn to be impolite. In an effort to teach her the things I would be working on with her as a hearing child, I ensure she says "Please" at appropriate times. It is one of the few signs we have down that she will also use. Unfortunately, she has not learned that hand placement is key in ASL, she often rubs her belly instead of her chest which is not a sign.

Today's Sign: Please

Place your right hand on the center of your chest. Rub your chest clockwise a few times. You have now signed the word please! This signifies a request or eagerness in relation to the discussion. It is not the same as "this pleases me".

http://www.lifeprint.com/asl101/pages-signs/p/please.htm

Sign a Day Project: Thank You

Due to Katelyn's hearing impairment, my family is going to be required to learn sign language at an accelerated pace. Friends & family have been asking how they can help, and the best thing to do is learn basic signs with us so Kate will feel more connected to our daily lives.

Learning sign language is a huge undertaking for all of us. In order to help friends and family (and work on the signs ourselves), I have decided to do a "Sign-A-Day" Project. This will hold me accountable to continue to learn new signs, and it should help friends and family learn the signs that we are working on daily with Katelyn.

Today's Sign -- Thank You

Use your right hand and touch your chin. Keep your hand flat and extend it away from your body towards the person you wish to thank, as if you were blowing a kiss (without puckering your lips).

credit: http://www.lifeprint.com/asl101/pages-signs/t/thankyou.htm

Thank you for joining us on this journey!

Katelyn's First Haircut

After about a year of my mother asking...I finally let her cut Katelyn's hair for the first time this past Sunday.

Hair washing -- she looks so little here still (I love it <3)

Katelyn is very much like I was when I was young. Mirrors are everywhere - she finds her reflection in windows, spoons, and microwave doors. She could look at herself in the mirror for hours. 

Perfect little angel. Sat still the whole time! It was just a trim. 

I love her curls and have no plans to cut them off! After picture will come soon....

The Big Move

What can make life more complicated than raising 4 kids (2, 9, 11, and 14 years old), learning sign language, taking care of 2 houses, planning a wedding, working full time, etc? A move.

Over the past month or so, we have been packing up my apartment and moving things to Eric's house. Consolidating houses is one step towards our new, consolidated, life. Slowly, we moved the small things ourselves, but we left the furniture to professionals.

If anyone in the Charlottesville, VA area is looking for a moving company, I would highly recommend Student Services Moving Company. It was a long day, but they did a great job moving the furniture and disassembling and reassembling the pieces. The stress was mostly just me feeling antsy watching people carry my things around.

After the movers finished up, the goal I had for Wednesday night was to have Katelyn's furniture organized and make her room look like it was set up. We still have to decorate and unpack her clothes, but she was VERY excited to see her new, pink, room with her furniture instead of just a pack-n-play. 

Having all of our stuff in one house is making things much easier. Now...just for the unpacking. I'm giving myself a deadline of 3 weeks to get all of my stuff unpacked. 

As Katelyn would say: Readyyyy? Set? Goooo!

ABR Results

Katelyn went in for the Auditory Brain stem Response test on Thursday morning at the UVa Medical Center. The team of doctors have concluded that she is clinically Deaf. Katelyn's brain did not show a response to any sound below 70 dBa. Below is a scale to give you an idea of what level that is.



orignially found on:
http://vancouver.ca/engsvcs/projects/soundsmart/soundAndNoise.htm

What was most concerning is that the booth testing done by the audiologist in January tested a response down to 35 dBa at certain tones. It is possible that her hearing loss is progressive and will continue to diminish. I believe that she appeared to respond to sounds when she truly did not. She is very attuned to non-verbal communication and could easily read the body language of an adult to give false positive responses. Since the ABR and booth tests are not conducted in the same manner, the doctors want to conduct the booth test again to see if her responses are similar or different than the ABR.


Now that we know she is Deaf. What do we do?


1. Learn American Sign Language

Luckily, there are lots of resources online to learn ASL. My current favorite is http://lifeprint.com/. I have also used YouTube to look up particular signs. So far we have learned very few, but Katelyn is responding well and seeming to catch on.

2. Lots of Audiologist appointments

On Friday, April 6th Katelyn is fitted with her hearing aides. We are lucky that the Virginia Department of Health will loan a set for 6 months as we save to purchase a set for Katelyn. Approximately twice a year we will have to get new ear molds made since she is growing so much, but the actual hearing aides will work for 4-5 years.

Providing that her hearing does not diminish, we will also conduct the booth hearing test once per month to ensure that her hearing has flat lined rather than deteriorated. Overall, these appointments will track her ability to hear with hearing aides and without.

3. See a Genetic doctor.

Dr. Hashisaki, the Ear Nose and Throat Doctor, has referred us to Dr. Wilson, a Genetic Doctor. Hearing loss is also connected to other complications that can lead to loss in kidney function and vision loss. Looking at her DNA will show if certain conditions exist without doing a lot of testing. I am hopeful that we can find out the most information possible with the least amount of testing using the genetic doctor rather than other testing methods.

4. Monitor her closely.

Her age makes many traditional tests on the ears and the eyes difficult to conduct without error. The margin of error is the main reason they plan to conduct the hearing booth test once per month. In addition, she has a feisty temperament making cooperation even more difficult. They have assured me that the 'mothers know best' strategy is the best one to monitor the success of her hearing aides as well.

5. Be patient.

The most important thing to gain from all of this is patience. Hearing loss is stressful on our family, however, having patience with Katelyn and one another will ensure that we work together to manage the hearing loss in the best way possible. With patience and time we will overcome this obstacle together.

originally found on:
http://www.raisingdeafkids.org/help/tech/hearingaids/aidcare.php

Providing that hearing loss is the only disability Katelyn has, she should lead a rather normal life. Deaf individuals often surpass their hearing peers in both speech and vocabulary due to the amount of speech therapy they receive.

We hope the hearing aides will work and that her hearing will not continue to diminish. Please keep Katelyn in your thoughts and prayers