It’s been six months since the story of a baby who has myotonic muscular dystrophy was featured at The Warren Center’s 29th annual Fantasy Football Draft Night.
Baby Siena who is the youngest of five, was diagnosed with myotonic muscular dystrophy, which is a condition her parents, Meghan and Daniel, said they did not know she was going to have.
Siena was born with low muscle tone and had some breathing issues, so she went straight to the NICU so doctors could figure out what was going on. Right away, her mom pumped milk for the baby and provided skin-to-skin contact, but said it was initially “very difficult.”
“It was hard to bond with her the same way that I did with the other kids just because she was so fragile we didn’t know what was going on,” Meghan said.
Siena remained in the NICU for a few weeks until her parents learned about her genetic diagnosis.
According to Siena’s mom, they then spoke with her doctor’s to put her on palliative care. Siena’s doctors weren’t sure if she was going to make it, so they transitioned her to a specialty care facility, where family members were invited to say their farewells to Siena.
However, Siena had other plans. She started breathing fine on her own, shortly after her doctors said they weren’t sure she was going to make it.
“We’ve decided in our house that ‘plan’ is definitely a four letter word that we’re not allowed to say anymore because every time we make a plan, Siena has a different plan for us and for her, so she got stronger every single day,” Meghan said.
Once Siena was discharged from the hospital and sent home, Meghan and Daniel looked up early childhood intervention services online and discovered The Warren Center. They contacted The Warren Center to see if there was anything they could do for Siena. They brought Baby Siena to The Warren Center for an evaluation. At the time, Siena was still wearing full-leg casts for her clubfoot.
They were introduced to physical therapist, Sam, at The Warren Center. Meghan said Sam started Siena’s evaluation and began manipulating Siena’s body in ways that she and Daniel had not done before because they were trying to be delicate with her.
“I knew then that it would be the perfect fit. Sam was so confident. She was asking all the right questions. She was handling Siena in a way that, you know, even we probably weren’t at that time,” Meghan said.
“What struck me about Sam is how confident she was. It didn’t matter that Siena had this relatively rare diagnosis. She was just like, ‘this is what we’re going to do. This is what we need to do,’” Daniel said.
Siena also began receiving speech therapy through The Warren Center in 2022.
Some major accomplishments Siena’s parents saw in July 2022 was that Siena’s upper extremity and lower extremity strength was improving week to week while working with Sam. She was able then to able to prop herself up with one arm, which is something she couldn’t do before working with The Warren Center. She could also roll to the side and roll over on her stomach.
In the video player at the top, you can watch Siena’s story that was featured at The Warren Center’s 29th Annual Fantasy Football Draft Night.
So how is Siena doing in January 2023?
Siena has continued to grow stronger, thanks to The Warren Center and her parents who have been working hard alongside of her! She has gotten a stander and is tolerating being in a supported standing position for one hour a day. She is also able to move the wheels of a small wheelchair and can spin in a circle, according to her physical therapist, Sam.
Siena is able to sit for five minutes independently and has started reaching short distances while sitting without losing her balance. She is also able to kneel with support and is getting better at tolerating weight on her hands.
As for her progression in speech therapy, Siena is babbling more and is using several American Sign Language signs to communicate with her parents throughout the day. She especially loves signing “all done” during her therapy sessions, but her therapists keep pushing her to reach her fullest potential.
Siena’s speech therapist, Allison, says the baby is following lot of commands from her therapists and parents. She plays a lot with food and will sometimes bring it to her mouth. She also loves reading books with her mom.
Siena’s family is currently touring schools and planning on enrolling Siena somewhere soon so she can interact with her peers.
Sam and Siena’s parents recently underwent a training at The Warren Center where they learned Dynamic Movement Intervention. Dynamic Movement Intervention is “a therapeutic technique used in physical and occupational therapy to treat children with motor delays by improving automatic postural responses and promoting progress towards developmental milestones.”
During this course, therapists got to learn 35 exercises with progressions and alternate holds to use with children they serve, like Siena. Sam got to practice the new exercises with Siena and her parents after she learned them.
In the video player below, you can view a January 2023 therapy session with Sam, Siena, and Meghan at Siena’s home. During this session, Sam used many of the techniques she learned at the DMI Therapy training.