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Archives for 2020
Steamboat Ski/Ride Weekend for Families of Deaf/hh Children
Registration is Open:
Steamboat Family Ski Weekend!
Plan now to attend this event just for rural western families with kids ages 5-21 who are deaf/hard of hearing at the STARS Ranch in Steamboat.
Lessons from never-ever to expert level, lift tickets, lodging, and most meals included in pricing, plus a chance to meet other families on and off the mountain with social events organized by Colorado Hands & Voices are included. Interact with Deaf/hard of hearing adults and Deaf/hard of hearing skiers, too!
Go to https://tinyurl.com/SteamboatFamilySki
to register by December 11. 
All children, communication modes, and abilities welcome, age 5 – 21.
Any waitlisted families from outside the mountain areas/western slope will be contacted after the deadline, so register now!
All access services included, and housing/transportation to and from the slopes. Lunch each day is on your own.
Hidden Dangers – CMV
Hidden Dangers
When Erin and Jeff Swetnam got the news that they were pregnant with their second child, they were overjoyed. Their son Michael was going to be a big brother! Erin did everything right during her pregnancy. She exercised, ate all the healthy foods, and didn’t drink alcohol. But there was another danger in her home that she didn’t know about; one that her doctor didn’t talk about. CMV (Cytomegalovirus) is the number one virus transmitted from mother to unborn child and the number one cause of non-genetic sensorineural hearing loss (SNHL) in children. It’s a danger that infects over 30,000 children every year.
According to the National CMV Foundation, “the virus is often symptom-free or may seem like a cold or flu. It is typically harmless in otherwise healthy children and adults. CMV is very common among healthy children one to five years of age (one in three five-year-olds are already infected), especially for those in daycare and preschool.” Expecting moms with older children are at high risk for catching CMV and passing it along to an unborn baby. Moms are often never told that using simple healthcare precautions could drastically reduce her chances of catching CMV while pregnant. These are as simple as avoiding sharing food or drinks with her toddler, not putting a pacifier in her mouth, not kissing away her son’s tears, and washing her hands after wiping his nose when he was sick.
“At 20 weeks we knew something was wrong with the baby. My OB still never mentioned CMV. We were sent to a high-risk doctor to do an in-depth ultrasound and amniocentesis. We found out that Matthew had calcifications on his brain and a small hole in his heart. We left without a reason why. We made a plan to induce at 35 weeks if we made it that far, but the doctors had told me to be prepared that he probably wouldn’t survive. At 30 weeks, we were told that Matthew had congenital CMV via a test result from amniocentesis. It was the first time I had ever heard of this virus. I wish I would have been told about my risks at my first prenatal appointment. It would have been nice to know precautions that could have been taken. The first time anyone explained anything about it to me was after I received the diagnosis,” says Swetnam.
Carrying a child with CMV is very stressful. There are no guarantees what kind of life a child may have until he/she is born. It’s a lonely and hard journey. At 32 weeks, Erin started early labor, and her family rushed her to the hospital. Later that day she had Matthew via emergency C-section. Weighing just 2 pounds, 7 ounces, he was diagnosed with an enlarged liver and spleen, low platelet counts, a blueberry muffin rash called petechial, and a bilateral hearing loss. He would go on to have multiple blood and platelet transfusions and start his 6-month antiviral medication series during his 46-day NICU stay.
As Matthew grew, Erin and Jeff knew he would need some extra help to meet his milestones. As he was learning to walk, he needed support from a walker to stay balanced while on the move. Matthew received his first Cochlear Implant when he was one and a half, and then another when he was almost four. When Matthew was 3, he was also diagnosed with severe Autism. His mom notes, “There are so many things we have to take into consideration for Matthew. Speech Therapy is a challenge because he needs so much sensory input during therapy. Trying to keep him on track with his autism is challenging. Every week we have PT, OT, and Speech, along with two therapies to help with his autistic behaviors. We did Sign Language and Auditory Verbal Therapy for a while as well. What he needs on a day-to-day basis always changes. He is also just a little boy trying to keep up with his big brother.”
Matthew’s day-to-day routines also have to incorporate his older brother, Michael. “We are very fortunate to have such a helpful son. He is always asking what he can do to help. He puts his brother’s implants back on if they fall off and he is so patient. Having a special needs brother has made him more sensitive and aware of others’ needs. But I also see the acting out. It’s hard to not be able to do all the ‘typical’ things that ‘typical families’ get to do. We are lucky to have grandparents on both sides who spend time with Michael. Jeff and I make sure we switch places so we can have one-on-one time with each of the boys,” says Swetnam.
There is plenty of joy, too! “We get these pleasant surprises out of Matthew all the time. Just recently we found out that he was reading at 4 years old. We had little cues from him, and one day I put about 20 words up on our whiteboard in our house. Matthew read every single word!”
These little warriors change our world as parents. “Our CMV kids who have challenges are often behind in meeting their milestones. But what they give us and what we see out of them is amazing. They are so strong and resilient. And they make us better people.”
For more information: National CMV Foundation or the CDC online.
Join the CMV Task Force in Colorado; email here.
Thanks to Jami Fries and Erin Swetnam for collaborating on this article. We look forward to sharing more information as a sub-recipient of the Colorado American Academy of Pediatrics Partnership Grant Award announced in June 2020.
Pen-Pal and Zoom-Pal Project
New to the Journey? Finding Your Way
New to the Journey?
Learn, Explore and Connect with other parents! These 45-minute Zoom sessions are led by Parent Guides to help parents connect with each other and learn more about raising a child who is deaf/hard of hearing. You don’t know what you don’t know – yet!
If you are new to the journey, this is your place.
Questions? gbys@cohandsandvoices.org
RSVP for one or more sessions here:
https://forms.gle/JpeYMDDGoDzG9QCt9
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