Sunday, December 13, 2009
- Lung Specialist- We were told that Sienna’s airways are always constricted which means it takes a lot out of her to breathe right. This did not come too much as a surprise; thus the reason I requested an appointment with a lung specialist. Sienna is always sick. Since a young age, she seems to get a cold easily and often which usually led to bronchiolitis, vomiting when she coughed, inhalers to calm her breathing, and many trips to the hospital. While we were there, he noticed her sides were in-drawing meaning she was having hard time breathing. I could not see this, in my eyes, she did not have a runny nose nor a cough therefore she was healthy. She did get an allergy test and surprisingly she is allergic to cats, dogs, dust mites and feathers. Well now that we know her airways are fragile, we must fix it. Because of her CMV, she has poor muscle tone which he says is contributing to the constricted airways. Therefore we must continue doing exercises to strengthen her trunk tone. Second, he put her on QVAR, a corticosteroid oral inhaler and ventilin daily until she gets stronger. We will return to see him in 4 months.
2-Endocrinologist (Hormone Specialist)- CMV does cause poor growth, however, our pediatrician at the Glenrose recommended that we see a hormone specialist to make sure that we are not overlooking what could be a factor in Sienna’s poor growth. So after a detailed review of Sienna’s history and our history; he came to the conclusion that Sienna’s poor weight gain is not due to her growth hormones but due to her having congenital CMV and to the fact that Kevin and I are small people. We return to see him in 6 months. According to their chart, with her weight and height of that day, she is actually gaining at a faster rate. Yeah! Let’s keep up the trend! She weighs 20lbs. 13oz..
We had a fantastic visit with my cousins, Darcy and Lisa, and our kids played, played, played. They were great hosts and took very good care of us, thank-you!
We also had a chance to visit some friends who we’ve been in touch with since May 09. A mutual friend introduced us because their daughter, Allison, just received bilateral cochlear implants last spring. Since then we’ve been in touch by phone and email so we decided to finally put a face to their friendly voices. We had a great time; it was such a pleasure to meet them and to share our stories.
Seeing that it is -40C here in northern Alberta, yes -40C, which marks the beginning of our cold winter, I am very happy that our next Edmonton appointment ( 4.5 hours away) is in mid February…. hopefully, after the brutal cold has past.
Wednesday, December 9, 2009
It’s not about the gifts, it’s not about the stress, it’s not about the go, go go like this time of the year usually brings. This year is different for me because really the only thing that matters is our health and our family. It will be exactly 1 year on December 19th, that we found out that Sienna was deaf. What an early Christmas gift that was!! As I take a look back, I cannot believe what our family has gone through. Today, my little girl is hearing and she is walking (not 100% but it is official), and that itself is a blessing, a miracle, a gift from God. I really don’t want anything else.
I just can’t come around to the entire gift giving thing. It’s just things. Can’t we just be grateful at this time of the year for the gift of health, the gift of family, the gift of laughter? Please take this moment to really be thankful for those gifts which surrounds you. How do we teach a 2 year old and a 5 year old that Christmas is not about the gifts it’s about family? With our actions and ours words, I hope that they see it as we see it.
Tuesday, December 1, 2009
Rylee is my #1 language tool.
Rylee is her #1 idol.
Sunday, November 8, 2009
Tuesday, October 27, 2009
Thursday, October 15, 2009
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.
PREVENTING CMV DURING PREGNANCY
- 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:
Please pass this message on and help me spread awareness about CMV.
Friday, October 2, 2009
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.
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.
Thursday, September 24, 2009
Video is from August 11th, her CI activation. What a great reaction!! The big frown, the look around, the arms out and of course the turn to mom, it was just too much for her.
We have begun seeing our SLP, Lindsay, in Peace River. We go once a week and we have a schedule of activities that we do. Right now it's all about receptive language for Sienna. She is taking it all in. You can tell that she is hearing everything, I just love it when she turns her head to me immediately after I start talking to her. We read to her everyday, we sing songs and we repeat everything...and by the way we have chosen to do all of this in french. We are a bilingual family, we are French Canadians. My husband only began speaking english when he was 6 years old and as for myself, my mother is english and my father is french. I went to school in french and received my Bachelors of Education in french. Rylee is bilingual, she speaks both french and english and sometimes frenglish. We cannot close that bilingual door just yet for Sienna. Our bilingualism is a part of our culture, our identity, our pride. I am a teacher, I believe that with Sienna being immersed in the two languages she will do well. However, I am open to the fact that at the end of the day, if two languages is too much for her, we will drop the french, and english will be her only language. Our SLP researched CI and bilingualism and found out that as long as the CI child is immersed in both languages, it is possible.
Hope you enjoyed the video!
Friday, September 4, 2009
I heard that!!
I turn the water on
It is so hard to believe
It is too good to be true
This is only the beginning
Rylee, the older sister
Sienna, the younger sister
misses her older sister
but gets to spend quality time with her mom!
Wednesday, August 26, 2009
Saturday, August 22, 2009
We went for our 2nd mapping appointment, it went very well. Sienna has worn her CI's without a fight for over a week now. I put them on every morning and she wears them all day except for when she naps and when we travel. She is very cooperative, she actually attempts to push it in when her ear mold falls out. Our audiologist gave us 4 more programs to work through. We do return on September 9th for the last of the 3 initial mapping appointments.
From the beginning, even before we knew she was deaf, I always said she was my little social butterfly. She is very interested in communicating, she reads people very well and she is always smiling. This is why I am so very excited about what she will be able to accomplish now that she has her CI's. I am wanting to begin a routine with her... my own speech therapy at home. The teacher in me is coming out. We are from a small town and our resources are limited. Her SLP is about 45 minutes away and has limited experience with hearing impaired children. She is very interested in learning and keeps in contact with the SLP at the Glenrose Hospital. However I feel like alot of the work will fall in my hands. That is why I am interested in taking webinars, online sessions, correspondence courses ... I just need a few more hours in a day!!
I find I am focusing too much energy in "looking" for those hearing moments, reactions to a sound, her head turning to my voice or any kind of "Aha" moments. Instead, I need to just relax and play with her, let her be a 2 year old. Sound to her right now has no meaning. My voice is just another sound. I can't wait to move her up through to program 4... so we can put her in her optimal hearing range... so she can look at me when I say Sienna. I've been waiting a long time for this.
CONGRATULATIONS TO SIENNA!
She is standing on her own for a couple of seconds.
She is taking a few steps.
She can go to a standing position from a squatting position.
Keep it up, we are almost walking.
Thursday, August 13, 2009
My sister, Anne, my brother in law and my niece joined us on this special day. It might help to know that, the Glenrose Rehabilitation Hospital is not a hop, jump, skip away from our home. We are a good 4 hour drive north of there so when my family comes for support, we appreciate it enormously as they took minutes, hours and days out of their schedules to spend it with us. Thank-you.
August 11th will always remain a special day in our lives. Before she was "turned on", our audiologist checked everything and all 22 electrodes are firing on both sides. This is great news as usually there are always some electrodes loss. Sienna cooperated very well, in part because her older sister, Rylee, was playing very nicely with her but also because I had marshmallows for her.
I, nor our audiologist, could not have predicted a better reaction. When the sound first came on, she made a big frown, looked around and put out her arms as if she was saying, "What in the world was that?" Our audiologist turned it off for a minute, we signed "all done". When she turned it back on, Sienna again had the big frown and now she signed "all done". We nodded our heads and said, "Not all done, Sienna, this is just the beginning." She then turned and hugged me, the sound was now scaring her. Our audiologist set the sound conservatively and has given us 4 programs, each one giving her a little more sound. By next Friday, when I need to return to the Glenrose, we should have worked our way up to program 4 slowly, depending of course, on Sienna's reactions. We need to make this a positive experience for her, the last thing we want to do is scare her.
As we walked out of the hospital, we could not help but feel sad. Saddened at the thought that for the rest of her life, she will need this equipment. First thing every morning, she will need to gear herself up to be able to hear the world around her, and the last thing she does before bed is take the gear off. This is a forever thing. When she first got her hearing aids, we needed time to adjust at the fact that she's always going to be different from the rest of the children. Again with the CI's, we seem to be going through those same feelings. A feeling that is hard to describe. A feeling my husband and I both felt. For a moment, when Sienna's CI's were first hooked up, she seemed as though she did not belong to us. "Who is she, really?" This feeling did not last long, we decided to come home that same day. We needed that alone time with her to remind us of who those little eyes belong too. They belong to our little girl who came into our world on August 28th, 07. Our little girl who is comical like her father and persistent like her mother. Our little girl who we will love unconditionally.
The next day, we spent time, fiddling around with her Ci's, helping them stay on her ears better. Her ear molds definitely work better. I remember a mother had sewn pouches on the back of her child's shirt. I'm going to try sewing a pouch on a few undershirts to see maybe if that'll work. I just find the babyworn clips so bulky. This is a learning experience for us, we will take each day as it comes. As soon as I have more time, I will post a video and pictures.
Thank-you to the CI moms out there who have been there for us. We will always need you.
Thank-you for the miracle of technology that is allowing our little girl to hear.
Wednesday, August 5, 2009
Weight- 18lbs. 7oz. (up 1 lbs)
Head circumference: 44.5 m (up 1.5 cm)
She is very close to 20 lbs... she is on an upward trend, this has never happened, it always was more like a roller coaster ride.
Our pediatrician at the Glenrose believes that CMV is the probable cause of her growth delay however she does not want to miss anything so she is referring us to the Pediatric Endocrine Clinic for an assessment. They will check her growth hormones which could be causing the delay.
She is getting closer and closer to walking! She lets herself go when standing against something... she's working on her balance.
As for her CI implants, we are less than a week away from Sienna's activiation! Can't wait!
Wednesday, July 15, 2009
We arrived at the hospital at 6:00am, I gave her a kiss goodbye as her eyes slowly closed at 7:45am and then the waiting began. If it wasn't for my parents who hung out with us for most of the day, we probably would have not made it. They are the most understanding, caring and the most unselfish people I know... they are always there no matter what. We love you enormously for that. We finally seen our little sunshine at 6:30pm, 11 hours later. She was lying there, still groggy from the sedation, but alert enough to wave hi to my mom and dad. Rylee did very well with the entire surgery thing. When it was time to go, she kissed her older sister and sang her "Twinkle, Twinkle Little Star." Sienna woke up at 2:00am, she had pulled out her IV and thankfully the nurses decided that as long as we gave her enough liquids, they would not put the IV back. Thank goodness! For the rest of the night, she slept off and on in my arms.
the Stollery Children's Hospital
Tuesday, June 30, 2009
Wednesday, June 17, 2009
Monday, June 15, 2009
This is it, we have decided to go with simultaneous bilateral implants. And... we have good news... our surgeon told us she has two dates available in JULY for Sienna's CI implant surgery and that we will know this week what day it will be. WOW... we were hoping for before her 2nd birthday, August 28th, but this is awesome. Hmmm.... July... that is just around the corner, so many emotions are running wild...
anxiety, nervousness, fear, but most of all excitement.
I found these pictures on Alexander's blog, i am thankful for my ears, and thought you would be interested to see exactly what it is. I actually just copied what Alexander's mom wrote as she explains it so well.
"The implant is more like a powerful hearing aid, although it is very different from a hearing aid. Instead of simply amplifying sound, it creates signals that the brain interprets as sound, making it ideal for people who have little or no hearing. Cochlear implants use a device called an external speech processor, worn outside the ear, to capture sound and convert the sound into digital signals. Those signals are then sent to a surgically implanted electronic receiver inside the head, which tells the implant to stimulate the electrodes inside the cochlea (inner ear). The brain then recognizes these signals as sound. Those that are qualified for an implant must have a certain degree of hearing loss (meaning "bad") or hearing aids will not help them communicate in society. "
stick to the
and there is the processor thats sits
behind each of her ears.
Cochlear implants is not a cure for deafness. Sienna will always be deaf however it is a "tool" to help Sienna communicate and live the best life that she can. With hearing aids, she is still in the moderate hearing range but with cochlear implants, she will be able to hear at a 20-30 decibels. Normal hearing is at 10-20 decibels.
We also met with the Neonatal Followup Clinic which included a dietician, PT, OT, a nurse, an audiologist and our pediatrician. We are very hopeful that she will be walking soo. We need to focus on her diet as she is only gaining 3 grams a day and she needs to be around 7-8 grams a day. Her CMV is working against us... so we need to work extra hard at getting those calories in her.
Friday, June 5, 2009
Sunday, May 24, 2009
She is a CI candidate according to her profound hearing loss in both ears however we still need to go through a few more appointments before they tell us that she is definitely a CI Candidate.
Here is what we are in for...
9-10- Sienna's hearing test (Glenrose)
10-11- Speech assessement (Glenrose)
11-12- CI Consultation (Glenrose)
3:00- appointment at the Wildrose to check Sienna's hearing aids
9-12 - CI Consultation (Glenrose) (without kids)
8:00-?? CT scan at the U of A where they need to sedate her
9-12 CI Consultaion (Glenrose) (without kids)
1-2 Social Worker (Glenrose)
3:00- The Wildrose Audiology Clinic is having a Kids Party for all the kids who wear hearing that they work with.
It'll be a very informative week, we will be reviewing the risks, pros, cons, statistics, etc... of cochlear implants.
We would like to thank Darcy and Lisa, Matante Yvonne and Tracey, in advance for helping us out this week in Edmonton, your kindness means everything to us.
I will keep you posted!
Sunday, May 17, 2009
I'm sure you can relate!
especially when I'm on the phone, or cooking supper....never fails)
Wednesday, May 13, 2009
BETTER HEARING AND SPEECH MONTH
For over 75 years, May has been designated as Better Hearing and Speech Month. This month provides an opportunity to educate and inform others about the importance of good hearing, the social and emotional implications of hearing loss, and the available solutions for those who suffer from hearing loss. One of the most commonly unaddressed health conditions in America today, hearing loss affects more than 31 million Americans, most of whom are below retirement age.
Raise your hand to support hearing health and take action to spread the word about hearing loss in your community.
Hearing Loss Facts
** 1 out of 10 Americans have a hearing loss - that's more than 31,000,000 people1
** 3 out of 1000 children are born with hearing loss - 1.4 million children have hearing loss in the United States
**Children with hearing loss who are identified and receive early intervention prior to 6 months of age develop significantly better language ability than children identified after 6 months
**15% of "baby-boomers" ages 45-64 have hearing loss
**29% of people over age 65 have hearing loss
** The majority (65%) of people with hearing loss are below retirement age
**It's estimated that 6.2 million people use hearing aids - per the Better Hearing Institute, 5-10% of people with hearing loss do not benefit from hearing aids, but could benefit from an alternative treatment such as an implantable hearing solution instead
"Even a very slight hearing loss can have an impact on your daily life," said Dr. Jerry Punch of the Department of Communicative Sciences & Disorders, and the Oyer Speech-Language-Hearing Clinic at Michigan State University. "Hearing loss is treatable, and there is no reason for anyone to miss all the important sounds of life."
Thursday, May 7, 2009
May 5th , 2009
weight: 16 lbs. 8 oz.
height: 28 3/4 "
No weight gain from March 24th but...
she did grow 0.6 cm, YOUPI!
CMV does cause poor growth...
however, I'm sure
her mom and dad's size
may have a little something
Wednesday, April 29, 2009
We are researching as much as we can, to find out about the risks, the pros and the cons. It is not easy when this life-altering decision for our girl is placed in our hands. All I have to say is thank goodness for the Internet. I have found all sorts of information through websites, forums and blogs. I would like to thank all of you out there for sharing your stories, your trials and tribulations in regards to your child's hearing loss and cochlear implant. You have helped us out enormously, being from a small town, it is sure comforting to know that we are not alone in this process and that there is hope for our little girl to hear one day.
Monday, April 27, 2009
From June 2008 until December 2008, Sienna was under investigation, why are these things happening to our little girl? In the summer of 2008, we started noticing her hearing loss. The first wakeup moment was when I returned from grocery shopping, I called her name and she did not respond. She is a mommy's girl, I knew if she had heard my voice, she would have turned without hesitation. By the time we were referred to an audiologist, an ENT, a test was done, an ABR was done... we finally were told on December 19th, 2008, the life-altering news, our little girl is deaf in both ears. Thankfully, impressions were taken on that following Monday. She was fitted with pink hearing aids on January 14th, 2009 when she began to hear.
The Glenrose Rehabilitation Hospital in Edmonton Alberta has played an instrumental part in taking care of our family. We began our visits in December 2008, over the Christmas holidays, someone from the hospital called us everyday, to see how we were doing. After extensive report analyzing, our Pediatrician at the Glenrose suspected Congenital Cytomegalovirus as the culprit for Sienna's health concerns. Just last week I received a call, they did a never before done, high-tech procedure, they checked her newborn blood spot for CMV. It came back positive. It's a relief to know that we finally have found the reason however CMV is a very complicated virus. If you would like more information about the virus, please click on the link to the Centre for Disease Control and Prevention.
Our journey has just begun. At 19 months, we know why, now we need to focus on having our little girl walk and of course having her hear with her two little ears she was born with.