Michelle and Ben are head over heels in love with their son Blake. They are quick to tell you about how wonderful he is, and how he easily steals the hearts of almost everyone he meets. Blake is so amazing he even saved his mom’s life before he was even born.
Ten weeks before her due date, Michelle’s water broke unexpectedly. Although she didn’t begin having any contractions, Michelle, already having four sons, knew that she should go to the hospital. Once there, doctors found that she had bacteria in her body that, had it entered her heart, would have been fatal. “They said had my water not broken, I literally had 12 hours to live,” said Michelle.
After inducing labor, a nurse noticed something else was terribly wrong. Blake’s umbilical cord had prolapsed and Michelle was rushed in to surgery for an emergency cesarean section. Born at 30 weeks, Blake stopped breathing twice for a total of eight minutes. “I could tell by the nurses’ faces that something wasn’t right and I didn’t hear him cry for what seemed like forever,” Michelle said. “It ended up being only three minutes, but then as they moved him down the hall to the NICU, they lost him again.”
Determined to live, Blake once again began breathing thanks to the efforts of the medical staff and was put on a ventilator. Because of the prolonged lack of oxygen to his brain, Blake’s prognosis was questionable. Doctors informed Michelle and Ben that they didn’t know when Blake would begin breathing on his own, if ever. Astonishingly, he was off of the ventilator four hours later. Additionally, they were told that Blake would be in the hospital for at least three months. Blake went home after four weeks. When they began to bottle feed Blake, the nurses said it could take him awhile to learn how to eat. He finished his first bottle with no problems. “They nicknamed him ‘firecracker’ because you could never count him out,”
Due to Blake’s traumatic entrance into this world, Michelle and Ben didn’t take any chances when they finally got to take him home. Susceptible to infection and illness, they didn’t take Blake out of the house and if anyone was ill, they could only look at Blake through the glass door. “We made the decision that he absolutely came first,” said Michelle. “He did not go to daycare, he did not go to the grocery store. We changed our schedules so someone was with him seven days a week for the first year. He needed a fighting chance to stay well, and he has never been back to the hospital or been sick since he was born.”
Although they were told that Blake could have seizures or brain bleeds, Blake continued to receive a clean bill of health from his pediatrician. It wasn’t until Blake was 15 months old when he was not walking, crawling or even rolling over that Michelle and Ben were finally referred to Heartspring for an evaluation. Immediately he began receiving occupational and physical therapies from Heartspring Pediatric Services in December 2008.
In the beginning occupational therapist Mimi French and physical therapist Cheryl Jabara used a co-treatment approach with Blake to best address his needs. “He had a lot of trouble using his legs in a functional manner,” said Cheryl. His poor trunk stability made it hard for Blake to perform any fine motor or play skills according to Mimi. Soon Blake progressed to where he could begin using a walker. That’s when Cheryl and Mimi both realized that his delays were being caused by more than just his premature birth.
Blake was having difficulty taking steps, as his legs would cross over each other. Unable to stand, Cheryl and Mimi referred Michelle and Ben to Dr. Valarie Kerschen, a developmental pediatrician, who diagnosed Blake with cerebral palsy when he was 18 months old. “I started crying,” said Michelle. “But it wasn’t because I was upset to hear the words, it was because we finally had an answer. We can take on anything if you let us know what we’re facing.”
After finally receiving a diagnosis, Michelle was quick to educate herself and her family about cerebral palsy. At Heartspring, Mimi and Cheryl continued to provide Blake with all the tools and resources he needed, including braces for his legs that help maintain his foot position.
“It is truly a blessing that Michelle and Ben brought Blake in for an evaluation,” said Mimi. “He demonstrated tightness in his lower extremities which affected every area of development: sitting, propelling himself, reaching for toys, grasping, general play skills and even self help skills.”
When he started occupational therapy, Mimi focused on strengthening activities to improve his trunk stability in sitting, creeping and crawling activities. They also worked on fine motor activities and self help skills.
Because Mimi works with fine motor skills that require hand-eye coordination, she watched Blake struggle to track objects visually. His eyes would even cross at a certain point. She then referred him to an ophthalmologist in November 2009 where he received several diagnoses including esotriopia, astigmatism and hyperopia. “There was a significant difference when he got glasses,” said Mimi. “He saw smaller pictures and was able to name animals and objects. He was more interested in puzzles and was motivated more toward fine motor activities because he could see them. “As soon as he put on those glasses it was like, ‘Ta da!’,” said Michelle. “He could see. He doesn’t ever take them off. He wakes up in the morning and asks for them and he’ll hand them to us as he gets in bed.”
Able to clearly see the world around him, Blake’s next challenge was learning to walk. Utilizing a walker and wearing braces on his legs, Blake navigates anywhere he wants to go. Wanting to be independent, he doesn’t like to be picked up. Instead he’ll say, “Blake do it” or “I walk,” even when it’s difficult.
“The first time that Cheryl brought out the walker and said you can take this home and we’re going to have you walk down the hall - Oh my gosh, you would’ve thought it was Christmas,” said Michelle. “He was so excited. He grinned and laughed. He was finally on the same level with everyone else.”
Michelle and Ben are grateful to Cheryl and Mimi for being so proactive in helping get Blake to Dr. Kerschen and Dr. Whitfield (Blake’s ophthalmologist). “Working with Cheryl and Mimi has been the greatest thing ever,” said Michelle. “They have made a huge difference in his life. They truly, truly have. They’re the reason he’s gotten help as quickly as he has. They’re the reason why, when I’m frustrated with things like (leg braces) or when I’m frustrated with his eyes, they helped me take care of it.”
“Even though I‘ve had four other boys, having a kiddo like Blake is like being a first-time mom all over again,” Michelle said. “Because you don’t know where to go and you don’t know what to do and Cheryl and Mimi guide us through that process. Literally. They have been with us the entire time. It’s amazing.”
Most of all, Michelle is thankful to Heartspring for helping to build Blake’s confidence. Blake’s newfound confidence, along with a recommendation from Cheryl, led Michelle and Ben to St. Louis, where Blake underwent a special surgery, selective dorsal rhizotomy (SDR), on August 27, just eight days after his third birthday. SDR involves cutting some of the sensory nerve fibers that come from the muscles and enter the spinal cord. Any abnormal nerves are cut, leaving the normal nerves in tact. This results in a better balance of activities of nerve cells in the spinal cord and reduces tightness caused by Blake’s cerebral palsy.
“The benefit of this surgery is that he will still have the use of his legs, but without the tension,” said Michelle. “He won’t scissor step. He’ll be loose.”
Now Blake will have to learn how to use his “new body”. He won’t know how to crawl, how to walk or how to sit up, said Michelle. “That’s when therapy comes in to teach him how to use his new body.”
In order for him to do that, Blake will be attending physical therapy with Cheryl four or five times a week for the next year, up from his hour-long session once a week. Cheryl jokes that she and Blake are going to be the best of friends. “Hopefully (this surgery) will allow him to walk someday without his walker, “ she said.
As much as Blake needs Mimi and Cheryl to accomplish his goals, they are just as excited to be a part of his life. “Blake is an awesome little man with the best smile and the cutest little laugh,” said Cheryl. Mimi and Cheryl are constantly purchasing Buzz Lightyear (Blake’s favorite movie character) toys to encourage Blake during his therapies. Following a recent therapy session with Mimi he had the biggest hug for her. “He is a little doll,” she said. “He can’t help but melt your heart.”
Ever since he defied the odds at birth, Blake has had the desire to do more. “He has a lot of work and a lot of milestones in front of him,” said Michelle. “He’s going to get frustrated, but he’ll turn that frustration into determination. He always has. It’s amazing. He’s very determined and always has been. Obviously.”
The youngest of five boys; Josh, 17, Jake, 15, Robert, 9 and Will, 8, Blake could easily get lost in the shuffle or be babied to the point where he didn’t have to do anything for himself. Luckily his tight-knit family pushes Blake to achieve. “They love him,” Michelle said of her sons. “They’re his protectors, but they also know that he can do things on his own. They’re teaching him independence so he doesn’t get spoiled.”
Blake’s oldest brother, Josh, who will start college soon has decided he wants to enter a field where he can help children with special needs after observing what his youngest brother is going through. “He’s seen what a difference Mimi and Cheryl make in the lives of these kids and that’s huge,” said Michelle. “(They are) actually changing a person’s life.”
Often you’ll find a member of Blake’s family tagging along to watch him work during therapy. “He’s got a big fan club,” said Michelle. “He doesn’t go anywhere where he’s not surrounded by people who love him.”
There isn’t anything Michelle and Ben wouldn’t do for Blake. “All I want is just to see him happy,” said Michelle. “He’s the reason I’m still here. If I have to sacrifice for him, I will. If I have to carry him, I will. If Heartspring decided to move three hours away, I’d say ‘Ok, I’ll drive it.’ He’s the reason I’m here and he deserves every opportunity he can get.”
For Mimi and Cheryl, Ben and Michelle are fantastic parents to work with. “Ben and Michelle work tirelessly with Blake to help him be the best he can be,” said Mimi.
“I can’t imagine our family without him,” said Michelle.