KS95 for Kids

Grady

Grady20Sommer

Listen to and read Grady’s story below:

Cary Sommer already had one child, so as far as her second pregnancy went, she believed she knew what to expect. That all changed when she was in her doctor’s office for a diabetes test, and began to experience the first symptoms of a placental abruption, a serious medical condition that can cause preterm labor.

“It was incredibly disconcerting,” Cary says. “You’re just going about your day and then now you’re being ambulanced to a hospital for an emergency C-section. 25 weeks is so early, what’s that going to mean for your child?”

Cary’s son, Grady, was born on May 17. He barely weighed two pounds.

He had also endured periventricular leukomalacia (PVL), which is characterized by the death or damage of the white matter in the brain. This is the section of the brain that transmits information between the nerves, spinal cord and separate hemispheres. The symptoms of PVL vary from child to child, but it often makes it much more likely that a child will have difficulty controlling certain motor movements. It also puts a child at a much greater risk of developing cerebral palsy (CP).

Grady and his family would spend the next three months in the hospital.

Coming Home and Next Steps

“When we finally got to take him home it was nice to just be parents for a little while,” Cary says. “Then as he grew and we were coming up on milestones, you started to see him missing them. It was around this time that he was diagnosed with CP and we were introduced to Gillette.”

CP isn’t just one condition. It’s actually a spectrum of movement disorders that manifest in symptoms that vary from child to child. In children like Grady, who had PVL, the most common type of CP that results is called spastic diplegia. This is a form of CP characterized by tight, contracted muscles, especially in the legs.

“Grady was basically in therapy from his infancy on,” Cary says. “As he got older he was pretty mobile, but it was difficult for him to walk. The tightness in the muscles in his legs made it almost impossible to do certain things.”

What is a Rhizotomy?

Around the time Grady was 6, the Sommer’s were told by their specialists that a surgery called select dorsal rhizotomy (SDR), would likely be the next step of his treatment process.

The muscle tightness that comes along with spastic diplegia is both friend and foe, simultaneously holding you up while also holding you back.

Rhizotomy surgery removes the faulty nerve roots in the spinal cord that are misfiring and causing this tightness. This effectively relieves the spasticity of the muscles, the only problem being that now you have to learn how to use muscles you’ve never really used before. The rehabilitation process requires carefully scheduled physical and occupational therapy that usually lasts between four to six weeks.

“No doubt, that’s a long time for a 6 year old to be in the hospital,” Cary says. “But Grady did so much better as an inpatient that we expected. In between his intensive therapies, we watched movies, we played games. It was almost like camp. We actually started calling it “Camp Gillette.”

During his stay, Grady also made multiple friends (both people and animal alike).

“The animal-assisted therapy with the therapy dogs was definitely a highlight,” Cary says. “The other nice thing about being at Gillette is that there’s this beautiful blend of people, many of whom are going through similar things. I think it really had an impact on Grady to look around and realize that he wasn’t the only one who had CP. He made so many friends in the unit, some who lived locally and others from all over the world. We all came from different places, but there was this shared understanding between the kids and their families.”

Looking Ahead

Nearly a year out from his surgery, Cary says that the progress Grady has made has been phenomenal. He’s spent the summer playing cards and board games with his friends, and recently visited the Boundary Waters for the first time.

“I’m incredibly proud of him and can’t wait to see what the future holds,” Cary says. “I think people who don’t have a child or know someone who has a disability occasionally overstate how important it is. Grady’s so much more than his condition and once you get to know him, the fact that he has CP isn’t something you spend too much time thinking about. Are there challenges? Of course, but life is good even when stuff is hard. We do our best to approach each day with that mentality.”