For the first time on this whole journey, Makenna asked me this question. And it broke my heart. It was at a doctor's appointment for her speech in Cincinnati last week. She had to have a nasal endoscopy to see her throat while she spoke. I'm not going to lie. It wasn't pleasant. They stuck a scope up her nose to see what happened in her throat while she spoke. We had talked to her prior about how she might see her throat on the screen and how cool that might be.. but it wasn't working. It was terrrible. Maybe the worst thing I've sat through. Dave asked on the way out of town if this was worse than coming out of anesthesia and casting... it was a resounding "YES' for me. I could always blame anesthesia on the anesthesia... this was fully awake and alert. And she was crying that it hurt ~ but she had to keep going. They couldn't see anything if she didn't talk while the scope was in. And when she cried, you could see the screen cloud up with silivia and mucus. That wasn't going to help... "Makenna, you have to stop crying and say the words before we can take it out" the doctor kept saying. It sounded sharp and strict, but it was necessary. I tried to tell her to be quiet and it wasn't working. "Just let Ann talk. It'll work" , they said. And it did. Eventually.
Finally they were able to see what they needed. Her adnoids are not symmetrical. They are slightly smaller on one side than the other. So when they go to close for the "s", "c" or "z" sound it doesn't create a full closure. We should keep doing speech therapy. Apparently, your adenoids change position/shape over time... and the doctor said in most cases they "fall forward", so that should help close the gap. I
We did meet with a wonderful geneticist on staff at Cincinnati Children's who took geat interest in Makenna. I thought it was wonderful that when he entered the room he had already looked up her genetic condition. That speaks volumes. And when the nurse told him.... "only about 80 cases"... he said "you mean 81" and pointed at Makenna. That struck a cord and I liked him a lot, He seemed very interested in her case and was thoughtful and thourough enough to have looked it up prior. We talked for at great length even though Makenna's speech issues aren't related to a genetic condition. But I welcome the oppotunity to make another doctor aware of her genetic condition. And of casting as a cure. Her original casting Doc, Dr. Sturm, is now casting at Cincinnati. This is important for all doctors at Cincinnati Children's to know. Many genetic disorders often have scoliosis as an orthopedic issue. Early treatment and proper care is critical. These kids need to go through an orthopedic department that can treat and cure the condition early. And this doctor welcomed the information and took it all in. Good people :)
Finally they were able to see what they needed. Her adnoids are not symmetrical. They are slightly smaller on one side than the other. So when they go to close for the "s", "c" or "z" sound it doesn't create a full closure. We should keep doing speech therapy. Apparently, your adenoids change position/shape over time... and the doctor said in most cases they "fall forward", so that should help close the gap. I
We did meet with a wonderful geneticist on staff at Cincinnati Children's who took geat interest in Makenna. I thought it was wonderful that when he entered the room he had already looked up her genetic condition. That speaks volumes. And when the nurse told him.... "only about 80 cases"... he said "you mean 81" and pointed at Makenna. That struck a cord and I liked him a lot, He seemed very interested in her case and was thoughtful and thourough enough to have looked it up prior. We talked for at great length even though Makenna's speech issues aren't related to a genetic condition. But I welcome the oppotunity to make another doctor aware of her genetic condition. And of casting as a cure. Her original casting Doc, Dr. Sturm, is now casting at Cincinnati. This is important for all doctors at Cincinnati Children's to know. Many genetic disorders often have scoliosis as an orthopedic issue. Early treatment and proper care is critical. These kids need to go through an orthopedic department that can treat and cure the condition early. And this doctor welcomed the information and took it all in. Good people :)