Chase's first and only Christmas, age 11.5 months.
The Wheelchair Runaround: Oh, the Bitter Irony
by Sharon Berry-Brown
A durable medical equipment vendor in Northern Virginia recently got to see a side of me rarely seen.
I
am non-confrontational by nature. I was voted "Best Friend" by my 4th
grade class. But if you try to dupe me or in some other way wind up on
my doo-doo list, you will be rebuked. And if you try any of the above
AND it involves my kids, well...you've been warned.
Focus: GI Treatments and Surgeries
Life with an Ostomy: A Mother's Perspective
by Jodee Reid
My daughter Matisse has never pooped; she never even passed meconium after birth. Along with bilious vomiting and an unwillingness to feed, her lack of pooping alerted us to the fact that our baby was sick. We would not know how sick for several months, since in the meantime she was misdiagnosed with a condition called Hirshsprungs disease, but it was believed that parts of Matisse's large bowel did not work.
As devastating as this was for us, her parents, we were somewhat reassured to hear there was hope for our baby, namely a surgery that would bring her "working" intestine out through a stoma or opening onto her abdomen. Called a colostomy, she would poop into a bag until such a time when the procedure could be reversed, allowing time for her large bowel to fully develop in its own time.
by Jodee Reid
My daughter Matisse has never pooped; she never even passed meconium after birth. Along with bilious vomiting and an unwillingness to feed, her lack of pooping alerted us to the fact that our baby was sick. We would not know how sick for several months, since in the meantime she was misdiagnosed with a condition called Hirshsprungs disease, but it was believed that parts of Matisse's large bowel did not work.
As devastating as this was for us, her parents, we were somewhat reassured to hear there was hope for our baby, namely a surgery that would bring her "working" intestine out through a stoma or opening onto her abdomen. Called a colostomy, she would poop into a bag until such a time when the procedure could be reversed, allowing time for her large bowel to fully develop in its own time.
Imperforate Anus--What!?
by Tracy Reed
August 8th was a day that both my husband and I will always remember. Not only were we going to welcome our fourth little bundle of joy into the world, but it was also a day that we learned about something most people have never heard of, or if they have, it's a "dirty" little family secret: imperforate anus.
by Tracy Reed
August 8th was a day that both my husband and I will always remember. Not only were we going to welcome our fourth little bundle of joy into the world, but it was also a day that we learned about something most people have never heard of, or if they have, it's a "dirty" little family secret: imperforate anus.
(Read More)
Biliary Diversion: Another Option for Children with Severe Dysmotility
by Jessica Hilliard
"Does it always look like that?"
"Hmm?" I turned to our surgeon. "What?" The nurse and I were trying to negotiate a sterile dressing onto my three-year-old's central line, a technically demanding procedure, especially on a squirmy preschooler. Of course, the specialist we'd been waiting all week to see had chosen that incredibly inconvenient moment to show up ready to discuss an extremely important step in my daughter Eithene's care.
"Her stomach drainage. Does it always look like that?"
I glanced at the bag. As usual, it contained about half a liter of blackish-green bile that had drained from my daughter's stomach over the last few hours.
"Yes, more or less."
"That is bad. I need to think about this." And he was gone.
(Read More)by Jessica Hilliard
"Does it always look like that?"
"Hmm?" I turned to our surgeon. "What?" The nurse and I were trying to negotiate a sterile dressing onto my three-year-old's central line, a technically demanding procedure, especially on a squirmy preschooler. Of course, the specialist we'd been waiting all week to see had chosen that incredibly inconvenient moment to show up ready to discuss an extremely important step in my daughter Eithene's care.
"Her stomach drainage. Does it always look like that?"
I glanced at the bag. As usual, it contained about half a liter of blackish-green bile that had drained from my daughter's stomach over the last few hours.
"Yes, more or less."
"That is bad. I need to think about this." And he was gone.
Specialty Article
When my daughter restarted TPN (IV nutrition) at age three, there were not many options available for cleaning or protecting the end of the cap (valve or hub) on her central line. We had a choice of alcohol swabs or rather expensive, drippy huge Chloraprep® applicators and Frepps®. To protect the end of the line, which always seemed to dangle right near her GJ tube and diaper, we had to resort to tape, plastic wrap, and creativity.
In the past few years, many new products have come out that make cleaning and protecting your central line cap much easier. Here are just a few of them.
Feature Article
I've had to write her school district many letters, most involving things such as placement and transportation. But this was the first time I had to write a letter alleging noncompliance with her IEP, and I definitely learned a lot of lessons along the way. While I will focus on the subject of a well-written IEP that is not being implemented in this article, much of the information applies to any letter you compose and send to your school district.