Families got through many things in their lives, but one very special family has already been through quite a bit and their baby was just born right before Thanksgiving. Tedra and Mike Grate have a beautiful three-month-old baby boy, Cohhen, but unfortunately, Cohhen has already been through so much and has so far come out like a champ.
Tedra tells the story from before birth and wanted to share their family’s lives as Cohhen became part of it. “We found out that we needed to go to Columbus to get what we were told then were new measurements. We go up and there are about five or six people standing around and we were wondering what all these people were doing. The doctor said we need to do further testing on the baby’s heart, cause it looks like he has a heart defect. He also said during that it looked like he had traits of down syndrome. But we would have to wait several weeks to find out, so here we are driving home, my parents, my husband and me knowing that our baby had a heart defect that may not be able to be treated and that the baby could possibly have down syndrome too,” said Grate.
Grate said that after about five or six days, their genetic counselor called and said that the baby did indeed have down syndrome and that for several weeks, she cried continuously and that she and her husband had to decide whether to go to Pennsylvania to terminate the pregnancy or to carry on with it and they decided to continue the pregnancy. “We had to go to two different doctors every two weeks. The size of his heart was very tiny. The doctor told them that she felt she could get him through his first and even second surgery, but that she wasn’t sure she could with the third one which would be around the age of two, because of the defect and the down syndrome.”
They had to then come home and tell their kids that not only was their sibling going to look different but that he may not be with them for a long time. She said her younger children who live at home said, “Well, we’ll still love him.” She said that they even discussed with them that as they get older, there was a possiblity that they might have to take care of him one day. Her son, Brenden who is 13, said that he didn’t care he’d just get him an XBox and they’d play it together all the time. Her younger daughter, Amelia(Millie), who is just eight, did have a sad time, but they started showing them photos of what he would possibly look like and they also were told by the doctors that they needed to start right away, making memories, because they didn’t know how long he might be with them.
Cohhen was scheduled to be born in Columbus and they had a plan to be induced so that Cohhen could be immediately taken care of. Grate, however, went into labor before Thanksgiving and the baby was born in Portsmouth and then immediately flown to Columbus. Tedra and Mike had to stay four hours before they were able to go to Columbus.
Cohhen was in Columbus for six weeks and he had open-heart surgery when he was four days old. The doctors were impressed that he was able to drink a bottle at that time and not have to have a tube. However, the day before they came home with Cohhen, he stopped drinking his bottles, so that is when they had to put in the tube. He is scheduled to have another open-heart surgery between April and June, which will be his second one. He is scheduled to have a GI tube in place before that instead of the one in his nose.
With the help of friends, Grate got in touch with Scioto County Developmental Disabilities and she said, “They got me set up with the girls that come into my home, they come every two weeks, and they access him and make sure he’s up to his milestones, they are great and they tell me what they want to work with the family, stuff that we want him to do, and we want him to do everything he can. Brenden wants him to someday be able to hit rocks.”
Cohhen has two developmental specialists, Erica Wallace and Cassie Clark. Wallace said, “We came together to do our first visit, but he did not necessiarily have to an evaluation, because down syndrome is a qualifying diagnosis, so we go right to the accessment piece. That is a family directed piece, we sit down and ask a lot of questions regarding his rountine, like what does do in the morning, the afternoon, evenings, car rides, and even bathtime, all that that you do during the day and anything that you see is a concern, then we talk about that. A family outcome might be just ‘tummy time’. Mom might choose that she would like to see him sit in a certain amount of time, so we choose that for one of his goals in 180 days.”
Wallace also stated that they do not compare him to a typical child, “We compare Cohhen to Cohhen. We gave her a booklet, an App to look at and we say this is where he is, and this is where we want him to be. We talk about medical appointments and just kind of update information from before. Our outcomes do not necessarily have to be child outcomes, they can be family outcomes, anything that the family would like it to be.” Wallace and Clark work for the Scioto County Developmental Disabilities Board and all of their visits are done in the natural home setting. She said that they are like coaches and that giving tips to the family, will change his life.
Grate is now a stay at home mom and Mike works to take care of the family, as Cohhen needs someone 24 hours a day. Wallace says that their family has been great to work with because it is usually hard to let strangers come into your home and they are excited to see where Cohhen is in the next six weeks.
Also while visiting the Grate home, Teresa Rowland, who is Community Opportunities Navigator for the Developmental Disability Board and a friend of Grate, said that eventually she too will work with Cohhen when he is older. Grate says that they want the best for their son and you want the best for your normal kids, so we want the best for him and the people at Scioto County Developmental Disabilities are part of the best for Cohhen.
Tom and Moni Kielmar, who are Grate’s parents, live just a few minutes away, are big support for her and the entire family. Her dad was at the house during the visit just to help straighten things up a bit because Cohhen had not slept the night before and she was too tired to do anything after that. Cohhen also wants to be held all the time. Her parents take their other children to school every day and help as much as they possibly can.
Cohhen also has two older half-siblings, who are grown, Jacob and Sierra Grate and they too, are involved with Cohhen. Grate also shared that Cohhen is quite unique, as Children’s Hospital has not had a child in the past 20 years that has had down syndrome and his exact heart condition and that here in Portsmouth, they had not had anyone since at least before 2012. So he will be in studies to help others who may have the same condition as he has. She did say that some of the studies that may not be him exactly, still have helped in taking care of him as his studies will help other children in the future. And according to those who work with him at this point, Cohhen is already overcoming obstacles.
Visiting Cohhen’s home and learning about what the family goes through and what he goes through, can’t help but make one see how special this family and this precious little boy is.
Reach Kimberly Jenkins (740)353-3101 ext. 1928
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