COLUMBUS — Just a little more than a year ago, we met Baby Cohhen Grate, a little boy who has both Down syndrome and a heart condition.
At that time, Cohhen was scheduled to have heart surgery in April 2020. However, plans do not always turn out, as Mike and Tedra Grate has found out. COVID changed things and Cohhen’s medical status changed too.
Many of our readers will remember Cohhen and his struggles from last year and the help he received from Scioto County Developmental Disabilities and his case manager Cassie Clark. One of the great things that the DD group does is stay with the child from birth through their life, so they are with Tedra and Cohhen to assist in any way possible, but with COVID, there wasn’t any way for them to do much in-person help. Clark shared that she is just able to give Tedra support on the phone. Both she and Theresa Rowland, the Community Opportunities Navigator for the DD board, have only been able to do that at this time, but they know that too is important.
Three months ago. Grate (Tedra) said that they went to Columbus for his checkup and to see when they thought Cohhen’s heart transplant might come to fruition. They never did the surgery in April and then it was decided with his condition as it was then that he needed a transplant, but they were able to keep him at home until three months ago when they were told his condition was such that he was going to have to stay at Children’s. Mike and Tedra took Cohhen home to say their goodbyes to their other children at home, Brenden, who is now 14 and Amelia who is now nine, then they went back to Children’s the next day and Cohhen has been there ever since.
They were told he was a 1B on the transplant list and it might take anywhere from three to six months for him to get the transplant. His stats started to drift down and they put him on oxygen just for nights, but now he is in-house. Grate said that they had been told he has moved up on the list, but they cannot tell the parents or anyone just where they are exactly and they don’t know themselves exactly.
Grate explained that she stays during the week and then Mike comes up Friday and she goes home for the weekend and then they switch back so he can go back to work. Grate’s parents Tom and Moni Kielmar, are taking care of the other two, who are both being taught virtually since the pandemic and due to Cohhen’s condition. Grate said that her dad, who is retired, has been doing most of the ‘teaching.’ She said it has been hard on the other children, with their mom being gone during the week and their dad on the weekends, then top that off with they can’t go to school and be with the other children. She said Amelia, the youngest, has had a really hard time because she is the mothering type and she wants her brother home. They have seen him just a few times, only through the window and it just seems to make it harder because they want to bring him home.
Cohhen has been doing therapy three times a day there, and he has learned to crawl while he has been there. Grate says that they are hoping that Cohhen will have his transplant before they have their ‘surprise’ baby boy coming in August.
Grate also mentioned that Mike has two young adult children Jacob and Sierra and that Sierra has been helping with keeping the younger children’s spirits up by doing things with them and bringing them some special little things, as Grate says it takes a village, what with them and her mom and dad.
Rowland said that the Scioto County Developmental Disabilities group had been around since the Ronald Reagan era in 1987. Also, each March, the National Association of Councils on Developmental Disabilities (NACDD) and their partners work together to create a social media campaign that highlights the many ways in which people with and without disabilities come together to form strong, diverse communities. The campaign seeks to raise awareness about the inclusion of people with developmental disabilities in all facets of community life, as well as awareness of the barriers that people with disabilities still sometimes face in connecting to the communities in which they live.
Reach Kimberly Jenkins (740)353-3101 ext. 1928
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