June 18th

June 18th is the day. June 18th is the big day. The day we go to Italy. The day we have all been waiting for. The day Riley Mae has her surgery. I'm sure some of you are confused because one of my previous posts said that it was May 14th. Yes well that got pushed back.

Dr. Yates (the most awesome surgeon and ENT doctor on the plant) wanted to push it back because he thinks Riley will be a little too young still. In may she will be 7 months, but really 6 months because she was born early.

I trust Riley Hospital. I trust IU Health. I most certainly trust Dr. Yates. Am I bummed? Not really...okay maybe a litte. I think one more month is minuscule to Riley hearing for the rest of her life. I want to be as safe as possible and the best outcome with her implants is that she is a little more developed. Meaning her bones and skull are harder.

So now we wait. Next stop is INDY! June 18th can't come fast enough.

Ch Ch Ch Changin...

The other day I was talking to my favorite brother (yea my only brother and sibling period) about our awesome yet disfunctional family and was getting a little heated in the conversation. This is what I like to call "going Cleveland" on them. Ahemmmm..

I say that to  people in Indiana when they done know me from before...from my past life...well from Cleveland. Once I started going Cleveland on Corey he said " that's the old Shannon back!" I stopped in my tracks and really wondered what he meant by that.

Another story...

I had a student tell me the other day " you are so sweet and just go with the flow". Ok I definitely had to stop at that one. I thought to myself....does she know me at ALL? Now I work with the student, I've been around the student on good days and bad...soooooo???

That got me to thinking.

Have I changed? Has so much happened that I forget who I am, or was....or maybe who I want to be? Deep down I feel that I am the same old" don't mess with me Shannon" (fly girl Jones) but now I don't think I would recognize that girl in the mirror anymore. I always used to say in college that "people don't change, only situations change". That was like my slogan...my live by quote. Was I wrong?

Have I changed or has my situation changed? I think a little of both. From 21 years old to 33 years a lot has happened, things that would change anyone. I was then a college student, a social butterfly, a hang out all night and go straight to work girl, a homie. I thought that was the most exciting time in my life. Boy was I wrong (even though it was super fun:)

Now I'm a wife, a mother, a home owner, a professional, a care giver, a provider. I think my situation has changed but so have I. I've grown. Ive stepped back. I am patient. I am present.

I'm not sure where the change happened. Maybe when I moved from Cleveland out to the country. Maybe when we were dealing with infertility issues for so long. Maybe when I found out I was pregnant for the second time. Maybe when my grandmother passed away. Maybe when I found out my mom had breast cancer. Maybe when I found out my daughter was deaf.

I think all those things happening in 2 years will change anyone. I'm different. I feel different but didn't really realize it. Maybe I didn't change. Maybe I just grew up. Some things I believe will never change:

Life is too short to hold on to grudges
Laugh out loud...really loud.
Apologize.
Time heals all. Give time time.
Have no regrets.
Mistakes happen. Learn from them.
Always forgive, but never forget.
Life goes on.
Pain is tempory. Quitting lasts forever.

Change. Maybe change is a good thing. If I didn't think back an everything we've been through in the past two years I wouldn't think anything has changed. But how could I not. I want change. I like change. I'm a mother now. An advocate for my child and children with hearing loss.  If you were to ask me 5 years ago if I thought I would be married, living in the country, with a 6 month old with profound hearing loss...I would think you were crazy. Nuts. Off your rocker. The good thing is I have changed. I have lighted up. I have done the things I need to adapt. To be happy.

You see, happiness is a choice. We all have it. Do it. Be it. Be the change you want to see.

6 Months!

Baby Girl,

Has it really been 6 months since you were born. That means 24 weeks, 168 days, and 4032 hours that you have been here. Boy oh boy has it been the most amazing, exciting, scary, hopeful and spiritual 6 months of our lives. You have changed this family is so many ways. You make me realize that the little things in life are the big things, to realize all the things I took for granted all these year, and to stop and BE present.

I can't believe how much you have grown in 6 months. I brought you home and you were 5lbs, now your (probably) around 15lbs. Can you explain yourself? Your growing up so fast. Everyday is like a new adventure and I love to sit and just watch you explore your world. Soon will be the day you put sound with your world and we will get to go through it all over again. 

This month was a big month. You started rolling over, you ate sweet potatoes, bananas and cereal for the first time. You had a great visit to Riley Hospital and scheduled your CI surgery and most importantly you got baptised. It has been an awesome month and can't wait for spring and summer to get here. 

You are almost sitting up by yourself in your Bumbo and love to watch me get ready in the morning. I act like I'm gettin you ready with me and you just smile and smile. Your pretty much always happy. You only cry when your tired or hungry and you still love the TV. I know it's the colors and bright lights you really love because you can't hear it but dad thinks you just LOVE watching sports center with him in the morning. 

I look forward to ever day we have together and our next adventure we will go on. You will soon know that nothing in our life is scripted, everything is fly by the seat. Things change...people change and life goes on, BUT there is one thing that won't change....your dad and I love you very much. We couldn't be more proud of you and every.single. thing. about you. I love you more than....christmas, more than springtime, more than pizza cutter pizza.

Enlarged Vestibular Aqueduct

So, when we were at Riley Hospital (RH from now on), we had a CT scan and met with the surgeon. Dr. Yates informed us that Riley (our Riley) had an enlarged Verstibular Aqueduct. A whatee whatee hubbeee doobeee? Yes, I think that was my exact response.

Let me go back. Josh and I have always wanted to know how this happened? How our child was born with hearing loss? There's not HL in our family, nothing from the ultrasound. How did this happen is the question I ask myself about once a day.....until I found out.

Doc says that this "MAY" have caused her hearing loss because most children with this condition will develop HL over time. Our girl just got it from birth and it is sort of a good thing because as we all know about everything....early detection is KEY.

So this is what I know about the enlarged VA ( and this is straight from Dr. Goggle)

Vestibular aqueducts are narrow, bony canals that travel from the inner ear to deep inside the skull (see figure). The aqueducts begin inside the temporal bone, the part of the skull just above the ear. The temporal bone also contains two sensory organs that are part of the inner ear. These organs are the cochlea, which detects sound waves and turns them into nerve signals, and the vestibular labyrinth, which detects movement and gravity. These organs, together with the nerves that send their signals to the brain, work to create normal hearing and balance. Running through each vestibular aqueduct is a fluid-filled tube called the endolymphatic duct, which connects the inner ear to a balloon-shaped structure called the endolymphatic sac.



Recent studies indicate that a vestibular aqueduct is abnormally enlarged if it is larger than one millimeter, roughly the size of the head of a pin. This is called an enlarged vestibular aqueduct, or EVA; the condition is also known as a dilated vestibular aqueduct or a large vestibular aqueduct. If a vestibular aqueduct is enlarged, the endolymphatic duct and sac usually grow large too. The functions of the endolymphatic sac and duct are not completely understood. Scientists believe that the endolymphatic sac and duct help to ensure that the fluid in the inner ear contains the correct amounts of certain chemicals called ions. Ions are needed to help start the nerve signals that send sound and balance information to the brain.

Did you get that? I am learning more and more about the anatomy of the ear, how we hear and everything in between that I sould have been an ENT. A lot goes into sound  and how we hear that I'm amazed we all hear like we do.

EVA is something that can affect your hearing over time. When we were at RH they said her hearing was actually getting worse (meaning from really bad, to really worse) and this could be why. Thats why we decided to go bilateral (both ears) right away.

Now to some parents, this could be heartbraking. To Josh and I, we are hopeful. The heartbraking part is over, it's done, we've greived and got through. Now we know how this happened, or why she has hearing loss. There's a good chance it isn't genetics and may not affect any other children we have. Who knows. That part is all out of our control. For now we are just happen that they WHY question in our life is answered.

FRIDAY! FRIDAY! FRIDAY



Dear Weekend, I am so glad your here. Have I told you how much I miss you. I actually get to NOT work this weekend. What a concept! Dear husband, I am going to apologize ahead of time for the honey do list and projects I am going to have going on. Sorry:) Dear Mother Nature, You and I have to talk! Please can we have a nice weekend. I would love to take the baby outside and enjoy some of the sunshine I am praying you provide. Dear Laundry, will you just please stop being lazy and wash yourself? Dear Pinterest, I don't know how I ever lived without you and can not wait to try some of your amazing recipes this weekend. Here is some of the things I am pinteresting lately....

I think you can see where our weekend is headin...

YUM....

and super yum......

This is so the truth! Happy Friday!

My Wish...

I hope that the days come easy and the moments pass slow,
And each road leads you where you want to go,
And if you're faced with a choice, and you have to choose,
I hope you choose the one that means the most to you.
And if one door opens to another door closed,
I hope you keep on walkin' till you find the window,
If it's cold outside, show the world the warmth of your smile,
But more than anything, more than anything,
My wish, for you, is that this life becomes all that you want it to,
Your dreams stay big, and your worries stay small,
You never need to carry more than you can hold,
And while you're out there getting where you're getting to,
I hope you know somebody loves you, and wants the same things too,
Yeah, this, is my wish.

I hope you never look back, but ya never forget,
All the ones who love you, in the place you left,
I hope you always forgive, and you never regret,
And you help somebody every chance you get,
Oh, you find God's grace, in every mistake,
And you always give more than you take.

How the CI works

Many of you have been wondering how the CI works. How Riley will hear? What are the risks, the milestones, the possibilites and more? As I am no expert on the topic, I sure have done my share of research. I am contantly on the internet looking at youtube video and reading other mom's blogs of children that have implants. I will tell you that it is so uplifting to see (and hear these children).

The Nucleus® cochlear implant system works in the following manner:

1. Sounds are picked up by the small, directional microphone located in the ear level processor.
2. The speech processor filters, analyzes and digitizes the sound into coded signals.
3. The coded signals are sent from the speech processor to the transmitting coil.
4. The transmitting coil sends the coded signals as FM radio signals to the cochlear implant under the skin.
5. The cochlear implant delivers the appropriate electrical energy to the array of electrodes which has been inserted into the cochlea.
6. The electrodes along the array stimulate the remaining auditory nerve fibers in the cochlea.
7. The resulting electrical sound information is sent through the auditory system to the brain for interpretation.

Riley will have two processors that she will wear at all waking times. She won't be able to hear when she has them off. The surgery will take away all of her natural hearing, leaving her to rely solely on the implants. Which I'm sure in her teen years that will come in handy for her:)

The surgery and the implants do not guarantee success. She will be able to hear speech, but developing speech is a different story. Riley will not hear like you and I, she will not know what it is like to hear like us. Her hearing will be more digital, more like a robot. She's going to get out of it what we put into it. We will kind of have to teach her to listen, to understand, and put sounds with words.

We have chosen to do Audio Verbal Therapy with her for her speech pathology. This approach to learn is a parent approach, and will teach Riley to communicate through conversation and natural sounds in her environment. AVT is learning to listen, not just hear. It is listening through VERBAL communication and not through visual communication, meaning sign language. As much as teaching your infant sign language is a good thing, it is not for what we are trying to accomplish with Riley. Josh and I do not know sign language, we know verbal english. We want Riley to be in our world. It's like if I were to go live in a foreing country that spoke another language, I would be lost. This AVT is a parent being the teacher approach and gets us involved in every step of the way.

 The CI outcome is really based on what we do and how Riley responds. Since she will be so young she won't know any different and will respond like any child learning to speak. We will continue to work with her providing everyday conversation, and our goal is for her to speak and be in mainstream preschool and so on.

Some people say to me " you guys are so awesome", " I am proud of you", "you are such good parents" or we are an inspiration on how aggressive we have been. My question is to them....Should it be any other way? What do other parents do? There is nothing Josh and I wouldn't do for this little girl and the power of 3 is how we will be.