Tiny-k program gives hope for toddler’s future
Alexandria Rose rolled over, sat up, looked at her grandmother and let out a sigh and a little squawk. She looked around the room wide-eyed from her post on a large blanket surrounded by pillows in her grandparents' living room, wiggled and kicked her feet gleefully. Alex is doing many of the things a normal infant of only a few months old would do, but Alex will be 2 at the end of this month.
Doing all these things at the age of 2 may not seem like a big deal to some, but to Alex's grandmother Martha, who asked that her last name not be used, it's everything.
"If this is all she does, that's fine," she said. "I didn't know if she would do anything."
When Martha looked at Alex at birth, she said she appeared to be a normal little girl, but after about three months, everything changed drastically.
"She was about three and a half months old when she started having seizures," Martha said.
The intense 30-minute or longer seizures turned Alex and her family's life into a whirlwind of hospital visits, doctors and tests to figure out what was wrong.
After three or four trips to Children's Mercy South Hospital a month, including an almost month long stay last summer, only a few things were learned about Alex's condition.
"We do know she has a little bit of brain damage," Martha said.
Alex also has atrophy of the brain and wears a patch on her back to help control a condition called chorea, which causes constant involuntary movement. Small myoclonic seizures cause her to lurch forward every so often, but she has escaped a major seizure or hospital stay for more than a year.
Now, it has been up to grandma and grandpa, Daniel, to re-teach her all of the things she knew before the seizures.
"Teaching a child to sit -- it's so weird," Martha said. "These things should come naturally, but the seizures just knocked everything out."
Martha said she is thankful that she does not have to go it alone. While Alex was relearning the basics, Martha also had to learn how to properly care for her disabled granddaughter. She found out about a program called tiny-k with the Leavenworth County Infant-Toddler Services, that provides therapy services to children from birth to age 3 in Leavenworth County at no cost to the families. Kelli Chop, an occupational therapist, began visiting Alex and Martha at home once a week for an hour to work with Alex and track her development.
"They gave me an idea of what to do and what to keep doing," Martha said.
Items were brought in such as a Bumbo Seat, which gives children support as they are strengthening the muscles used to maintain a sitting position. Once Alex outgrew the Bumbo Seat, she was placed and held on top of an exercise ball to continue to strengthen the trunk muscles. Martha said Chop has been a huge help to her and Alex, especially since they can work in the comfort of their own home.
"I'd rather have her (Alex) here with us than try to figure this out in a hospital," Martha said. "That's what I like about tiny-k -- they come to you."
Martha said she gets excited to see Alex progress everyday with just the smallest things: making noises, reaching out, gripping with her fingers, sticking out her tongue and feeling with her feet.
"It's all so medial to some people, but she's never gripped before," Martha said. "There is so much stuff I took for granted with my kids."
Dawn O'Brien, director of tiny-k, watched Martha interact with Alex on Thursday and was pleased to see Martha's excited reaction to Alex's small yet progressive actions.
"One of the goals of tiny-k is to teach the families to work with the children," O'Brien said. "This is a perfect example of that."
Chop said that because Martha is with Alex 24 hours a day, she has helped Alex progress even further by incorporating the things Chop does with Alex during her weekly visits into Alex's daily routine.
"Grandma just gives her (Alex) so much support," Chop said. "Our one-hour visits are not what is going to make the difference in the life of that child. We rely on the caregivers to follow through. Martha does a really great job with that."
Currently, Chop and Martha are working with Alex on touch, purposeful movements and play and oral stimulation. Alex eats through a Mic-Key button, or a stomach tube, right now and Chop said the oral stimulation would help bring them closer to one of the first goals of getting Alex to eat food through her mouth.
"Tiny-k has been the only thing that has helped me know what to do," Martha said. "I've never had to teach before."
Other goals are standing, walking and forming words. While most children Alex's age are just embarking on their terrible 2's, Martha said Alex is far from terrible. Even though she cannot walk or talk yet, Martha said Alex's little brown ringlets and happy disposition never fail to bring a smile to everyone's face.
"This is her; she's just a joy," Martha said. "It is so odd not having to say, 'don't do that' because she never cries or does anything wrong. She doesn't have sorrow or know the concept of mean. It just brings tears to my eyes because everything she does is amazing."
Alex will go to the doctor for her next MRI in November to see if her condition is progressive. Martha said she is hopeful for a positive outcome because everything has been growing proportional physically and her actions are not regressing. She said tiny-k has been a big part of their success.
"It was so hard, not knowing any outcome," Martha said. "Just working with them has given us hope that she'll do much better."