Our New Grandbaby is Deaf, Now What?
by Jayne Frank
by Jayne Frank
We were so excited to welcome a precious gift from God into our family. It was May of 2006, and we knew the big day was fast approaching. My husband and I did not know a thing about being grandparents except the word on the street was that it is the best thing that will ever happen to you. So we bought a box of diapers and some wipes, a onesie and of course a special lovie to keep at our house. We were anxious to pour our love on our new baby.
Morgan Elizabeth was born on May 31st. The doctor said, "Oh. what a beautiful healthy baby girl you have, just perfect!"
Well, or course perfect in God's eyes. but to our surprise Morgan didn't pass the newborn hearing screening. "Oh, don't worry, it is fluid," the nurses said. "Come back in a week and we are sure she will pass." One week later she still didn't pass.
The Missing Smiley Face: A Journey To Hearing Loss
by Rachel Zook
by Rachel Zook
The journey to Emma being diagnosed with hearing loss was frustrating to say the very least. It started shortly after her first birthday when she had not really started to speak clear words. But we were told by her early intervention teacher that they did not worry about speech until the second birthday. Fast forward to her second birthday, when Emma still had only about four spoken words and a lot of gibberish. We were sent for a hearing test before her first speech evaluation.
Focus: Hearing Impairment
My 19-month-old son, Spencer, is a rock star. Music is ingrained in his DNA. It really doesn't surprise me since his dad and I have been schooling him since before he was born. When I was pregnant, his dad and I would fight over what type of music "the fetus" would listen to in the car--Metallica or Phantom Planet. I would drum on my stomach along to Nofx songs and Spencer would kick right along. I sang The Gaslight Anthem songs and played MXPX on guitar for him and he would "dance" on my bladder. His dad was waiting for the baby to come so he could brainwash him into being a heavy metal kid. I was planning on sharing my love of punk and indie with our little bundle of joy. Needless to say, we knew Spencer would love music just as much as we do, and he does. His face, his entire body, lights up when he hears music notes.
Hearing impairment is a common problem in children with developmental disabilities or who have multiple complex medical issues or disabilities. In many cases, however, hearing loss is overlooked because of the difficulty of assessing children who cannot speak, move, follow directions, or maintain concentration throughout a hearing test. Other disabilities, such as autism or physical disabilities, may make standard indicators of hearing milestones difficult to interpret for both parents and professionals.
One afternoon last February, my daughter Karuna's eyes started going wild. Her pupils would get stuck at the sides of her eyes, and every time she tried to fix them, they would bounce right back into the corners of her eyes. At times, they would just wiggle back and forth in a classic horizontal nystagmus, though always to the left. Even her head would tic along with the movement of her eyes.
While my daughter is significantly visually impaired, we had never seen anything like this. At first we thought it might be a seizure. We gave her several doses of seizure rescue medication, which did manage to stop the movements once she fell asleep. But as soon as she woke up, the eye and head movements began again. The next day she had eye movements not only to the left, but also to the right.
What on earth was this? And how could weird eye movements end up as hearing loss? It turned out she had a rare condition called labyrinthitis.
Specialty Article
Puffy, Dry, Why? Fluid Balance Issues Explained
Quality of Life: Tubes, Lines, and Other Attachments
My daughter is currently in the PICU having a lot of trouble with fluid balance issues. It's something she deals with all the time, as is the case of many children with complex medical issues, especially those with tubes or lines. Currently she is very acutely ill, so the issues are more extreme, but they are omnipresent no matter how healthy she is.
In the most general terms, the term "fluid balance" refers to the state in which the fluids you take in are equal to the fluids you put out through urine, stool, sweat, and other losses. When fluid balance is not perfect, either dehydration or overhydration can occur. In this article, I'll go through the symptoms of being dry, being overhydrated, and some of the complications that can occur with either state.
Feature Article
We've all heard some variation of the following said by healthy adults: "If I get sick and need a feeding tube or breathing tube, just let me die. What kind of life is it with a tube to eat or breathe?" While all people are entitled to an opinion, I think it is a common misperception that tubes, lines, and other attachments reduce quality of life. Most parents of children with these devices would say the exact opposite, that medical technology has improved quality of life.