Tuesday, October 27, 2009

Sienna's hearing progress!

Well, it'll be just about 3 months post-activation for our little Sienna.
Everyone always asks...so are they working?
Here is what I say...
Yes, my little girl can hear!
She looks right at us when we speak to her!
She looks at the phone base when the phone rings!
She recognizes certain sounds and points or acts it out!
ex: When she hears "eeee" she does a monkey.
She differentiates between sounds... for example a bark and a meow!
She dances when she hears music!
She sings our little song when it's time to wash our hands
(doesn't have any sounds right but she has the melody somewhat)!
She localizes sound!
She can hear!
The next question asked.... is she talking?
Here is what I say...
She is making new sounds, not nessarily the ones we are showing her but they're new sounds!
She does "ou", "ow", "ba" and others with no association to anything, yet!
She just started saying,"mam, mam, mam" when she is whining for me!
Its only a matter of time before we hear her first word!
We are reading to her all the time.
There's never any background noise.
We go to Peace River for speech therapy once a week.
Alot of one on one with her.
Lots of repetitions.
There is one thing Sienna has taught me through all of this, it is PATIENCE.

Thursday, October 15, 2009

Wash your hands....STOP CMV!

As most of you know, Sienna has congenital (born with it) cytomegalovirus, CMV. While pregnant with Sienna, my doctor noticed on the ultrasound that Sienna had an enlarged ventricule in her brain. After many ultrasounds at the Royal Alex, one doctor recommended that we get a TORCH screen done once the baby arrives. This would have meant, Sienna would have immediately been diagnosed with CMV, perhaps given an antiviral which could have slowed down and maybe stopped the virus from attacking. She may not have had severe/profound hearing loss, she may not have had such great developmental and growth delays but the doctors referral was missed; all the doctors under baby Sienna's care did not see the recommendation.

After 18 months of questions, concerns and many appointments, a diagnosis came in March '09 when a dedicated and caring pediatrian at the Glenrose Rehabilitation Hospital and a persistent and knowlegable Infectious Disease Specialist at the Stollery Children's hospital worked together to give us an answer to Sienna's hearing loss and developmental and growth delays. They did a never before done test of her newborn blood (which is kept in a lab in Edmonton for the scientist not the doctors), testing for CMV, which came back positive. I have learned alot about this silent and complicated virus and I continue to learn everyday as I encouter new situations. I would like to take this time to share with you what I know about CMV. My knowledge comes mostly from the website Centre for Disease and Control and from the Infectious Disease Specialist at the Stollery Children's Hospital.

  • Between 50% and 80% of adults in the United States are infected with CMV by 40 years of age

  • CMV is the most common virus transmitted to a pregnant woman's unborn child

  • Approximately 1 in 150 children is born with congenital CMV infection

  • Approximately 1 in 750 children is born with or develops permanent disabilities due to CMV which is a 0.001% chance that it'll happen to you

  • Congenital CMV (meaning present at birth) is as common a cause of serious disability as Down syndrome, fetal alcohol syndrome, and neural tube defects yet nobody knows about it

  • CMV is found in body fluids, including urine, saliva (spit), breast milk, blood, tears, semen, and vaginal fluids

  • Once CMV is in a person's body, it stays there for life

  • Most CMV infections are "silent," meaning they cause no signs or symptoms in an infected person

  • Transmission of CMV occurs from person to person, through close contact with body fluids (urine, saliva (spit), breast milk, blood, tears, semen, and vaginal fluids), but the chance of getting CMV infection from casual contact is very small.

  • In the United States, about 1%-4% of uninfected mothers have primary (or first) CMV infection during a pregnancy.

  • 33% of women who become infected with CMV for the first time during pregnancy pass the virus to their unborn babies.

  • CMV is spread from person to person contact (such as, kissing, sexual contact, and getting saliva or urine on your hands and then touching your eyes, or the inside of your nose or mouth)

  • Women who are pregnant or planning a pregnancy should follow hygienic practices (e.g., careful handwashing) to avoid CMV infection. Because young children are more likely to have CMV in their urine or saliva (spit) than are older children or adults, pregnant women who have young children or work with young children should be especially careful.

  • Vaccines for preventing CMV infection are still in the research and development stage.


  • Wash your hands often with soap and water for 15-20 seconds, especially after changing diapers or touching saliva or nasal secretions from a young child.

  • Reduce contact with saliva and nasal secretions from young children by 1) using soap and water or a disinfectant to clean hard surfaces that have been contaminated by secretions, 2) not sharing food, drinks, or eating utensils with young children, and 3) being careful to limit kissing of young children on the lips.

  • If you work in a day care center, limit close contact with children younger than 2½ years of age, especially if you've never been infected with CMV or don't know if you've been infected.

Because Sienna has congenital CMV, she carries the virus and will for the rest of her life. Most of the time the virus is "latent" (i.e. hiding in different cells of the body) and not being excreted. However, from time to time they will shed virus without any symptoms. It can be transmitted by direct contact or contact with a contaminated object, although the highest risk is with repeated direct contact.

Although the risk is extremely low, 0.001% chance, of having a baby born with CMV and permanent disabilities, it happened to me. I am very cautious when Sienna is out especially around pregnant women. This post is to educate pregnant women on the importance of hand-washing even when you are around your own children because they could also be carrying the virus.

Here are other informative links:

Congenital CMV Blog

Department of Health- New York State

Stop CMV

Please pass this message on and help me spread awareness about CMV.

Friday, October 2, 2009

Grieving the loss of a hearing child

Just to bring you back to the day we found out Sienna was deaf...
For months we were told that she may have a minor hearing loss as she was very vocal and had also passed her newborn screening test. So after many consultations, we finally had an ABR scheduled, an auditory brain response test where the child is sedated in order to test their brain's response to all levels of sound.
There we were waiting in the recovery room, our ENT entered. She went on and on about hearing loss and that Sienna had a profound hearing loss. She said they stimulated her with sound as loud as they could and there was no response. Kevin and I were sitting there, confused so I had to ask, I just had to..."Is Sienna deaf?" I said it, I said the "D" word, and the ENT responded with "yes." Our world came to an end, we were speechless. This news came on December 19th, 08, just before Christmas. Our Christmas last year was spent grieving, we traveled through all the grieving emotions, one by one. This did not happen overnight, it took a while to deal it. I watched an Oprah episode shortly after and one man who lost his twin brother described it like this...
You have a beautiful picture on the wall of what you imagined your life to be,
For us it was a healthy, "normal" family...
Then one day, something happens
They tell us Sienna's deaf...
You then take that beautiful picture from your wall
You smash it into a million pieces
Grief overcomes your mind, body and soul
And slowly as you accept your new life,
As you journey through the pain
You begin painting a new picture.
We have painted that picture, Mom, Dad, Rylee and Sienna, our beautiful family. Sometimes, I catch myself going through the grieving emotions all over again, so I read the poem below.
I came across this poem on one of my CI mom's blog, Tammy about her son Aiden. She is a truly amazing mother. Aiden is very blessed to have a mother who loves him, who will do everything and anything to make his world a better place. I learn alot from her.

This poem is about what happens when a parent finds out there child has a diability. It is so hard to help people understand the feelings a parent goes through. When first told, every parent goes through a grieving process, we are grieving the loss of a "normal" child. With grieving comes denial, anger, deep yearning, despair and finally acceptance.
Welcome to Holland
by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go.
Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free
to enjoy the very special, the very lovely things ... about Holland.