Growing up. . .

This picture was taken yesterday at Savanah's Christmas program at USD. I have to say that all of these kids in her class, take that back, the entire school, feel like some of my children. I have rooted for them, seen their progress, watched as themselves and families made it over impossible looking obstacles. I have talked and really connected with their parents and have made friends that I know I will have my entire life.

There is definitely a strong connection between families with deaf children. I cannot explain it. I can't put my finger on it, but these kids. . . Hunter - Jacob, Leah, Ellie, Savanah, Tyson and Justin have become my "kids" too! And they are all doing so wonderful, I am so very proud of them. We could not have asked for a better teacher either, Becky is our hero and she is absolutely wonderful!

This little gal has her first loose tooth. . .

and she could not be more excited for the Tooth Fairy to come!

Carefully placed under a pillow of white
Lay one little tooth as she turned out the light
Her eyes closed in slumber, a smile upon her face
Covered up to her chin with a quilt her momma made

Quietly hovering above her sweet head
A room full of fairies looked down on her bed
Little gold bags were carried by some
While others had wands that glowed like the sun

Each one had a job to fulfill in the night
Some brought coins and others brought light
Together they worked as they flitted about
Replacing the tooth with some coins to be found

Their job was complete as she let out a sigh
Then they floated to the ceiling way up high
Out of the window and into the night
The tooth fairies flew leaving behind such delight.

Feelin' a little lost. . .

Savanah has started a new reading program through her mainstream school today. There are a series of beginning reader books that she has to learn to read and have me intial them.

Apparently this program is said to be very good. They have seen tremendous success with this, and I am a PTA volunteer for this program also, helping organize the books and hand them out every week. I can definitely do that part!

But I am feeling extremely lost on how to teach my deaf child to read. She is understanding all of the letters in the alphabet and for the most part, she can tell me all of the sounds they make. I don't remember my parents teaching me how to read, but I also could hear.

Anyone out in this great big world, with a deaf child or not, have any suggestions for me and my Savanah? I want her to succeed in this world and READING plays a big part in that.

PaTtErNs

So Savanah has homework. She has a workbook full of things to learn such as counting, letters and the sounds they make, sight words, memorizing her address and phone number, birthdate, etc.

She also has a math workbook that comes home once a month, you are suppose to complete fifteen activites with your child and for the month of November, the math homework is on patterns.

Now, she is gone all day at school, I rarely see her anymore, or so it feels. The other night as I sat down to start this pattern math homework with her, I expected her to not know what a pattern was. I expected her to listen to my explanation. But instead, I was listening to hers.

She explained to me she knew what a pattern was, it's like "A, B, A, B, A. . ." or "red, yellow, red, yellow. . ."

WOW! I was blown away, I don't know why I was so surprised by her knowledge of this, but I was and I shouldn't have been, because Savanah is so smart. She has always been smart. I mean she was 100% potty-trained before the age of 2, she learned to scale out of her crib at 18 months old, she just figures things out quickly.

Her speech and language is expanding so much, I am so excited everyday. She is becoming the perfect model of what a implanted child should be doing! Woohoo Savanah!

My best teacher.

I have never felt so blessed. I am constantly amazed by Savanah's strength. She is such a beautiful little girl with such a caring, sensitive heart. Sometimes I wonder if this gentle soul is so sensitive to others because of her own disability?

We were reading a book tonight in bed. It is a book that is a poem about a box of crayons, and none of the crayons get along. A little girl is in the toy store and she hears the box of crayons arguing. She buys the crayons and takes them home and starts coloring with them. She colors this beautiful picture and shows the crayons that the blue became the sky, the green became the grass, the white became the clouds and the yellow became the sun etc. She explains to the crayons at the end of the book that each one of them is unique but when they all get together, the picture becomes complete.

Savanah loves this book. We have had it for awhile, we read it maybe six to seven times a month. It is such a simple, kind story. Savanah understands the meaning of the book, but she especially understands the part about each of the crayons being different. She knows she is not the same as hearing kids. In fact, she is proud to point that out to people. She will gladly show you her implant anytime. But she also knows her deafness does not define who she is. She knows that she is a smart, patient, strong, kind, resiliant little girl who is loved by many.

Tonight after we had finished this book. Savanah turned to me and said, "We are all different Mommy. I am five. Gracie is one. You are tall. Daddy is strong. Grandma is nice. Grandpa is funny. Ellie is silly. Tyson is cute. Koby is happy." And so on. . . - what I noticed from her description of how people are different, was each of the things she named, was not something about the way the person looked, but a good trait of theirs. I was proud of her for noticing these things and allowing specific traits to define a person.

I am so amazed by her everyday. If we all paid a little more attention to five year olds, maybe we could all learn a little something about kindness.

Two "EARS"!

We had our every 4-month trip to Logan last Friday to visit Savanah's audiologist. It was one of the best trips ever because Savanah had her VERY BEST audiogram since she was born!!! Her audiologist also did a hearing test without her cochlear implant and her right ear has stayed consistent the last three tests, so the only thing left to do to strengthen that ear and help her not to strain as bad, was to put her old hearing aid back on until January when we purchase a new, more powerful hearing aid.

So as of now, Savanah has two "ears" on and she is ecstatic! She cannot wait to show her friends at school on Tuesday. Day off tomorrow!

I thought she would be angry at this, I thought she would hate the mold again and the amplification of noise coming from the hearing aid because it is so different then the sound she gets from the cochlear implant, which is more natural because it mocks natural hearing. BUT she loved it! She talked about it the entire way home, at lunch, with grandpa and grandma when we picked her sister up and then the entire night. She is so excited and says she can hear better now! EXCELLENT. Anything to help improve Savanah's quality of life with hearing, we as parents are willing to do!

*SAVE THE DATE*

Hallowen (Kid-Friendly) Party
Friday, October 30th 2009
From 6 PM to 9 PM
2720 Edgewood (Clubhouse) - where the swim deaf social was held two summers ago!
Bring your little ghouls, goblins, princesses, monsters dressed to impress.
There will be lots of games and activites, prizes and GOODIES!
Hope to see you there, please RSVP to Sarah (that's me) on FB, or through my e-mail!

Cancer is nothing like deafness. . .

But deafness is not like hearing. I read this book awhile ago. Wonderful book but just had the opportunity of seeing the movie tonight. I knew it was going to be sad. I read the book. I teared up in parts. But the movie was so much more impactful in ways I couldn't begin to explain. Normally movies do not touch me this way, normally I like the books better. But tonight there was something different, I have a daughter now and although she is not ill with cancer, we face our own personal and family struggles daily because of her disability.

I remember the exact way I felt when I was told Savanah was deaf. My entire world crumbled. It was so unexpected. So sudden. I cannot even begin to imagine what a mother must feel like to learn that their child has cancer and could face death. I remember feeling so selfish when Savanah was diagnosed. I remember feeling like this was so important and nothing else in life mattered and that we had to do everything in our power to help her. I remember feeling pity, not as much for Savanah, but for myself. I was so selfish, so absorbed.

Until the first visit to Primary Children's. It changed my entire perspective. We only had a deaf daughter who had a virus, when thousands of families were dealing with children with auto-immune disorders, rare diseases and cancer. All of a sudden we were a speck on a MASSIVE wall. That day changed my entire life. I was so thankful for Savanah. I was so thankful she was healthy. Breathing. Laughing. Smiling. Walking. I was thankful I had a daughter and she did not have to cling to life, the only thing she had to do was live it.

I admire all of those families. The ones who have stayed up countless hours praying that their child will make it through the night. I admire the siblings, grandparents, friends, neighbors, teachers. . . who have sacrificed many hours to help their sick friend, sister, brother, neighbor, cousin, grandchild, niece, nephew, classmate. But I admire the child, the child who endures and never gives up. The child who embraces their life for what it is, the child who is like mine and yours in all of the other ways that just makes them a child.

I love Savanah and I know she is different from others.I know that she and our family will continue to face struggles. But I am so grateful everyday that she is healthy and that Gracen is healthy and that our family is happy. I am grateful I am here on this earth and I get the opportunity to be their mother. I am so proud of Savanah and everything she continues to teach me about life. I am so glad Savanah is deaf and she gets to be "our keeper."

Small steps in a BIG world.

Today I had the wonderful opportunity of going into Savanah's mainstreamed Kindergarten class and talk to her classmates about her cochlear implant. Another parent came along with me to represent her daughter as well.

I have to admit I was a little nervous. NERVOUS about talking to 5 year olds. I stood at the front of the class and felt so massive. It has been that long ago that I use to sit where they were.

I called Cochlear about a week ago and asked if they could send some resources for the class to help them understand better what a cochlear implant was. And they sent coloring books with a wonderful story about "Kaci the Koala" and how she got her implant. It also explains the entire process with surgery and the mapping appointments that followed afterwards. With the coloring books I typed up a little note and stapled them to each one to send home with the other students. I wrote to the other parents about cochlear implants and urged them if they had the time to sit down with their child and go over the book with them. I told them to let them know that everyone is different but we can all be friends.

The kids were darling. Very polite and receptive to everything we each had to say. We avoided big words and let them ask the questions. We let Savanah and Ellie stand up and show their implants off. We also let them pass around their stuffed animals the cochlear implant companies sent them when they recieved their implants. The kids thought they were cool. They had noticed that Savanah and Ellie didnt't quite talk right but seemed to be uneffected by this.

I was so happy to see children being respectful and open minded. They were happy to listen and happy to learn. They raised their hands so high to ask questions and also answer, and although it was a brief ten-minute presentation - I hope it is one that will stay with them their entire lives.

How does that work?!?

We were at Costco the other day when a person asked how a cochlear implant works. There are times when it is hard for me to find the words to explain this amazing device but I always seem to come back or start with that it mocks natural hearing and acts like a real "ear." So thought I would break it down for some of you through Cochlear's website. This is a great explanation.

1. Sound processor: External sound processor captures sound and converts it into digital signals.

2. Digital signals: Processor sends digital signals to internal implant.

3. Electrode array: Internal implant converts signals into electrical energy, sending it to an electrode array inside the cochlea.

4. Hearing nerve: Electrodes stimulate hearing nerve, bypassing damaged hair cells, and the brain perceives signals as sound.

I remember Kindergarten!

I am starting to really feel old. First I have a five year old little girl. Second, she is now officially in Kindergarten! I remember what it was like to be five. I remember my teacher, Mrs. Harris. I remember the smell. The tiny toilet. The recess doors. The shape stations. The carpet that we sat on to listen to a book. I remember Dallas Reynolds eating my paste. I remember coloring, cutting, counting, writing my name, sharpening pencils and being a big kid.

Will this make me a better mom? Will I be on the same page as Savanah with Kindergarten so fresh in my own mind. I hope so but then I start to think that her experience wil be so different then mine. Her entire school years will be so drastically different. Yeah, she is in a mainstreamed class right now but there are so many things that have seemed different. She knows she is one of two girls in the class who wear cochlear implants. She also has not metioned any other friends.

I hope it is just me that percieves it different. I hope she has a wonderful year and remembers everything I remember, all of the good of starting to grow up. Kindergarten. Where all the innocence still is.

The Bathtime Blues

To a parent who knows,

One of our biggest struggles. Bathtime. I have chosen to have Savanah bathe in the mornings to make it a little less stressful at night. Gracie knows she takes her bath in the evening and Savanah knows she takes her bath in the morning. BUT this is when all the fun begins. . . the implant comes off and Savanah enters into "her world."

Now she use to be a big splasher! Water would be everywhere. She got talked to many times after her bath, when her implant was back on, that water splashing is unacceptable.

The struggle now is learning to take a bath by herself. Start her bath, wash her hair and her body and rinse thoroughly. She has taken thousands of baths. But now starting Kindergarten, I am expecting a little more independance from her. I would like her to be able to bathe herself, drain the water herself, dry herself off and dress herself.

Is my expectation too high for my five-year old who cannot hear during bathtime?
Sincerely,
Savanah's mom

Really?!?

Well isn't it nice that Utah School's for the Deaf will not be starting alongside Alpine School District this year! The new building next to Orem Elementary is not even completed yet! They tore the old one down right after school ended in May and can't even finish it in time for the kid's to start back at school on time. So Savanah will be in Orem Elementary in the morning in her mainstreamed classroom starting next Thursday and then come home because USD can't get on top of things. But what is even better is the fact that I found this out last Friday, when I showed up at Scera Park offices in person to drop off a few papers!

22 DAYS till this. . .

I'll miss you Savanah, my little Kindergartner. But now it's time to shop! Image, courtesy of GAP.

"I can hear the fireworks!"

It can be such a simple activity like lighting off fireworks to really capture what a blessing this cochlear implant has been. Never have I felt like we made the wrong decision, but it is moments like on the 4th of July, when all the sounds and noises of the holiday are going on and Savanah is experiencing these events as a "hearing" child. Some sounds are totally new for her, even if she has heard them before, she is hearing them on a new map, or her implant has been fine tuned since the last time, so each time her face lights up - this sound is new and fresh for her. This year the fireworks were amazing for her. She did not take her magnet off, she just took it all in, with the biggest smile!

How does your garden grow?

So as a GREAT activity this year for Savanah and I do while Gracie takes naps, was to plant a garden and care for our little garden. (Grandma Hill and Grandpa Hil also helped tremendously because their daughter does not have a green thumb) anywho. . . Savanah decided she wanted to plant pumpkins and carrots, and then I wanted zuchinni, squash and tomatoes and Daddy wanted peppers, peas and rhubarb!

So in a nutshell - we have this garden, our first time garden and WE ARE ACTUALLY growing stuff! It is so amazing and fun to watch! We have have tomatoes already they are green but give them a few weeks and Daddy ate the first bell pepper two days ago and Savanah and Gracen have become a fan of raw rhubarb.

It has been a great language opportunity for Savanah. It has definitely expanded her vocabularly with the different plants, weeding, watering, bugs, sun, lots of water, cleaning off the veggies, waiting until they are ripe etc.

If you have never planted a garden but would love to do so and are nervous because all of your houseplants you have killed off - DO NOT BE INTIMIDATED! Gardens are such a miraculous thing, they pretty much grow themselves.

There is something frustrating. . .

About swimming with a deaf child. I am more anxious and nervous. When Savanah has her cochlear implant off, she goes into an entirely different world. It becomes "Savnah's world" and only she can "hear" in it and "talk" in it. It is so interesting to watch, I become fascinated by this everytime we swim. She talks louder and jumps all over the place.

You can tell her to "don't run, only walk" or "don't splash those people" or "it's time to go home and we can swim tomorrow" - BUT Savanah does not hear any of that. Whatever she lip-reads is what she will take in if she wants to. She is more stubborn while swimming and being in her "world." Sometimes I think she prefers this world. It is so peaceful in her head. So quiet. And she can "hear" EXACTLY what she wants to hear.

Me on the other hand, I have become so use to this AMAZING device in her head. This device that is allowing my beautiful five year old daughter to hear everyday. This device that when it is on she gets to experience "our world" - the world of hearing. I cherish moments when she has it on. The simplest sounds that she can hear and she lets me know it. I am so at peace when it is on.

"What do you want to be when you grow up Savanah?"

Yesterday I asked Savanah what she wants to be when she grows up. She gave me a litle confused look and then I started listing off several different careers, a doctor, nurse, policeman, firefighter, artist, teaceher etc. and her response was: "NO MOM! I want to just be a mommy so I can watch TV all day." - I just had to laugh and so do all the other stay-at-home mom's out there right?!?

It is so hillarious that in the eyes of my five year old, that when she is at school all day, she thinks I just sit and watch TV. A magician must go grocery shoppng, wash her clothes, clean the house, run errands and cook for her! Some magician!

"Clean up, clean up. . . everybody, everywhere. . ."

So this child of mine, my sweet little Savanah only cleans her rooms sometimes, and when I mean sometimes, when it is asked of her. We tried a chore chart for awhile, it worked for a couple of weeks then it wore off. Either I would forget or she would forget. I tried helping her make her bed every morning and put her toys away. That just didn't last. Maybe I am too weird, everything has it's own bin. All of the dress-up goes in the green bin, all of the miscellaneous toys go in the clear bin, the babies and the barbies - pink bin - you al get the picture. So last night I let her clean her room up the way she wanted to clean it up. I wasn't in there hounding her, making sure every toy was in it's correct place, she did it the way she wanted and it looked great! But before I could take a picture of the final product, it was destroyed by Gracie!

Another school year has ended

I have to say school ending feels so bittersweet. I am so excited to have my little Savanah back full time but also a little sad that this experience is something we both will never get back and sad that I know, along with most other deaf educators would recommend a deaf child to remain in a summer program. Unfortunately, around here there are only such things as summer camps. Savanah will get to go back to school for 2 weeks with her deaf friends but then that is it till August. Oh well. . . we will do what we do and really work hard with her over the summer. I want to thank her teachers, Becky and Jessica for their hard work and dedication to the cause. We are so proud of Savanah for all her progress she has made this year. Great job Savanah and keep up the good work. We are so excited to have you back for the summer, swimming, swimming and yes more swimming!

FINALLY!

Orem City finally came through and we now have this SIGN right in front of our road now - SO SLOW DOWN! We have lived in our home for five years now, everyone in the neighborhood knows Savanah is deaf but still fly around corners way too fast. . . maybe this will be a little reminder!

Signs On The Trail 2009

What an awesome event! This year it was held in Draper at this gorgeous park. The word has really gotten out since this first happened three years ago, and I have to add ADC did such a wonderful job! If AG BELL could do something this terrific with the food, the booths, the entertainment, the raffles, the place. . . it would be something really wonderful. My mother-in-law and myself did the 5k (which really turned out to be 4.4 miles, we got directed the wrong way, but SO FUN)! And if you look closely a special guest was there (Rachel Coleman - Signing Times) - Savanah walked up to her and said "You are in my TV!" - So cute. We are so thankful to Desmond's family coming and supporting our little Savanah for such a great cause. Thanks Nana, Papa and Aunt Stephie (and Uncle Justin and Aunt Krishelle even though you guys couldn't make it.) Rachel Coleman performed, they had a sweet raffle this year. We will definitely continue to go to this run - what a great cause and what a terrific day. ASPIRE everyone to do great things!

Considering. . .

We just ventured to the trip to Logan to see Cache. Everything went well. But this is the third time that he is recommending stimulating her right ear. . . with a hearing aid but he would prefer another implant. Struggling with this decision?!? There is not enough research in the world to help make this decision. . . any opinions out there? Would love to hear!

Sleeping angel. . .

Savanah has always been such a great sleeper, day 1 - brought home from hospital and slept all night. It has pretty much been like that ever since, except for a few exceptions when she would go through weird phases, like pottying on the floor or coming into my room just so I would walk her back to her room. . . but I attest this wonderful sleeping to not being able to hear at night. Can you imagine not being able to hear a thing at night? You would probably sleep like this little angel too.

Happy Birthday Savanah and Ellie!

So last Saturday, Ellie's mom and I threw a birthday party for our girls with all of their friends from school. It was so much fun and since these two girls are so Tinkerbell crazed, it was natural to have a Tinkerbell themed party with the boys dressed as pirates. We did a treasure hunt and they got to decorate their own cupcakes. Then it was present time, a whirlwind of paper and bows. . . but it was so much fun and we are so grateful that these kids get to spend time together outside of school. It makes it so fun to watch these kids over the years and see how much progress they all continually make.

ROOT! ROOT! ROOT!

Each year AG Bell puts on a speech fair at Orem Elementary. This year Savanah and her class are to perform the song "Take me out to the ball game. . ." - it's a sports themed fair this year. So this is Savanah's video of her practicing at her Grandma's house (with a little help)! She is doing so wonderfully. I picked her up from her friend's house today and was blown away with our conversation in the truck on the way home. She told me about her entire day at school, how they were learning about weather and that it is still a little bit winter outside. She told me about rainbows and that she is going to see Tinkerbell skate in one day with Grandpa and Grandma (Disney on Ice), she told me how much she loves her friend M and that she doesn't like the big boys, only little boys like T at school. I am so proud of her. I couldn't wait for the day when we would be able to talk, like actually talk. . .her listen, me listen and we both understand each other! It is so wonderful, there is never a moment that I want her to be quiet, never a moment I just want her to stop talking. If there is one thing anyone can learn from Savanah, even if you are around her for just a moment, I think you realize how much we should all cherish our ability to hear, speak, listen, sing, listen to music, hear movies, hear nature, share our opinions, express our emotions through words, listen to life. Everyday Savanah makes me more thankful, thankful for my abilities and her disabilities. She makes me thankful that she is my daughter and I her mother and for all the things she continues to teach me each day. Thanks for talking Savanah (and most of all thanks for listening and being oh so patient with me!)

Every other week. . .

Savanah and I venture over to her school to attend Parent-Child Therapy with her teacher, Becky. Savanah looks forward to this because she gets some "mom time" all to herself. She is doing so well and each time I am so impressed with how much her vocabulary is expanding. Thanks Savanah for having fun with me while we are there and thanks Becky for teaching us so many new things.

Facts and Figures. . . Taken from HelpKidsHear.org

Did you know that…

Hearing loss is the most common congenital anomaly found in newborns…and yet not all newborns are routinely tested for it.
Approximately three per 1000 babies are born with a significant hearing loss, and many more children are born with milder forms of hearing loss.
14.9% of US children aged six to nineteen have a measurable hearing loss in one or both ears.
Any degree of hearing loss can be educationally handicapping for children. Even children with mild to moderate hearing losses can miss up to 50% of classroom discussions. Unmanaged hearing loss in children can affect their speech and language development, academic capabilities and educational development, and self-image and social/emotional development.
The average age of identification of hearing loss in infants is two and a half to three years of age - well past the critical period for speech & language development.
Studies estimate that as much as 90% of what young children learn is attributable to the reception of incidental conversations around them.
37% of children with only minimal hearing loss fail at least one grade.
All children can be evaluated for hearing loss. Even children who are only minutes old can have their hearing assessed using tests that are safe, painless and easy to administer.
Recent NIH studies have shown that children with hearing loss who are identified and receive early intervention prior to six months of age develop significantly better language ability than children identified after six months.
93 percent of deaf children are born into hearing families; only 7 percent are born into deaf families.
American Sign Language (ASL) is the third most widely used language in the United States.


- It seems like almost two years after the implant - normal life has finally begun for Savanah. There are not so many appointments, she is not having to get so angry with us because we can't understand her, she doesn't have to sign if she doesn't want to - she CAN FINALLY HEAR! But the fact is she is not a "normal" child - she is a deaf child who is functioning in a hearing world with a cochlear implant. She is a statistic, a child born with congenital CMV where the only affliction on her body was hearing loss and deafness. BUT this will never define her character, I don't feel the need to introduce my daughter as "Savanah, our deaf child." Although I do believe A LOT of her personality and sweetness have been linked to her disability. We love her so deeply, she is the most gentle spirit you have ever been around. She makes me remember when I am angry about something, to not be so angry anymore. I am so proud of the progress she has made and the steps she continues to make. I am so glad everyday that I have a deaf daughter. I am so proud to be an advocate for her and that I get the great opportunity to educate others. Thank you Savanah for being a HUGE part of our lives.

The disability is what you make of it!

Savanah has been dancing at Jazz N Place for a little over a year now and she is doing so awesome! Anyway, a few nights ago while she was in her dance class, another mom and myself were waiting for our girls to finish. We got to chatting and quickly became friends. She asked several questions regarding Savanah's hearing loss, when we found out, who we saw, when she got her implant and other things regarding her surgery and her therapy. She had a nine-month old little boy with her, she later in the conversation told me that her son had hearing loss and that the doctors suspected he had downs. I was the only person she told me that she felt comfortable enough to tell. She let me know that people had been staring a lot at him, whispering and passing judgments. She asked me if I have had to deal with any of this with Savanah. And I quickly answered yes. I told her that I really struggled with her disability for a long time. I explained that I was always worried about what people thought, I was embarrassed to put her hearing aid on. I did not want people to stare. I told her that no matter what anyone says to you, you will work through it in your own way. I learned that I am a better person because of Savanah's disability. I don't care what people think. I don't care if people stare of laugh at Savanah. Her deafness does not define her as a person, she is not Savanah THE DEAF GIRL. She is Savanah, our daughter, grand-daughter, sister, friend, niece. She is happy, healthy, funny, exciting, inventive, sweet, kind-hearted, a big helped, a wonderful dancer, generous and smart. It was definitely therapy for the both of us to talk about this struggle, something that you never imagined would happen to your child did, and I think it is definitely what you make of it. We have taught Savanah to never give up, always believe in herself, be happy and proud of her hearing loss and even more proud of her cochlear implant and everything she is able to accomplish with that. I think that mother and I walked away with a greater appreciation for one another that day. . .