Gia, 19 months, who is diagnosed with a chromosomal duplication (9q34 Dup) and has used a feeding tube since birth.
One BIG Miracle in Such a Small Girl
by Tiffany Cox
If I ever had any doubts about whether God truly existed or if he really heard my cries, those were all erased the day Riley was diagnosed. I witnessed the healing hand of God.
Next week we celebrate four years of LIFE with Riley that weren't promised to us. I've been asked before if this story is made up. Trust me, I WISH! Riley was diagnosed on October 28, 2006 with a rare blood disorder. There is no cure. She had a hemoglobin level of 2.9 and was near heart failure. In the past four years, Riley underwent surgery, chemotherapy, blood transfusions, medications, tests and numerous hospital stays. Doctors have told us that medically speaking she shouldn't be alive. She IS, and God has given her one heck of a testimony along the way!
by Paxton Moynihan
I cannot speak for everyone, but I will do my best to help give a voice to people who can't express themselves.
My name is Paxton. I'm 25 years old and I'm in college. This is my fifth year, and I'm a long ways off from graduating. I have Asperger's syndrome, hereditary spastic paraplegia, Ehlers-Danlos syndrome, asthma, and eosinophilic GI disease.
I wish I were like all my friends who live in dorms, have snowball fights on the quad when there are snow days and drive around to Starbucks, Taco Bell and the diner near the school. I wish I could drive anywhere.
I wish I was taking the same math classes other kids who have been here as long as I have are taking, but I'm not. I guess I make up for this in my head because people always say they wish they could draw like I do.
The Lady with the Lamp: Using Ultraviolet Light to Sterilize Line Sites
by Laura Bailey
My son, Tyler, has had a total of 26 central lines. Some of those lines
were temporary and some were meant to last a long time, like the
Port-A-Cath that he had last year. Tyler has been very traumatized by
these line placements and especially by painful dressing changes. After
watching him struggle for years, I finally came up with a better
solution: ultraviolet light sterilization.
Current Information on Omegaven
by Abby Brogan
My daughter Ellie was born in April of 2006. She came a month early,
but over all my pregnancy was normal and she was initially doing very
well. Things began to change after her first hour. The next 24 hours
were something I wouldn't wish on anyone. It ended with both of us in a
new hospital, her recovering from exploratory abdominal surgery, and the
very nice surgeon explaining to us that Ellie was born missing 90% of
her small bowel and 30% of her colon. After she fully explained what
Ellie's GI system looked like, she started talking about what
Ellie's life was going to be like and what the future could be like.
It was a very scary and grim conversation.
In the past, long-term parenteral or intravenous nutrition (PN) has been reserved primarily for children with isolated gastrointestinal disorders, and not for children with complex medical issues, such as mitochondrial disease or other severe multi-system disorders. In fact, the most recent version of the Merck Manual continues to state that PN is only indicated in patients without functioning GI tracts or requiring bowel rest, such as in short bowel syndrome, bowel obstructions, inflammatory bowel disease, or congenital anomalies.1 These conditions represent the majority of people on PN; however, there are other groups who can potentially benefit from it, particularly those receiving palliative care who experience significant GI pain and dysfunction.
While many studies address the use of PN in terminal illness or other end-of-life situations, the use of PN in children receiving comprehensive palliative care who are not at the end of their lives has not been explored in any great detail, either ethically or medically. This article will discuss the advantages and disadvantages of using PN as a treatment in children receiving comprehensive palliative care.
Eating Like a Toddler -- With a Feeding Tube: Tube Feeding Whole Foods
by Chelsea Webber
Like any parent having her first child, I had planned out the various ways that I might raise my son. Thoughts of his bedroom, entertainment and nutrition were all part of the big picture. Just like having children wasn't supposed to put me in lock-down in my home, having a child with a feeding tube wasn't going to change my nutrition plans if I could help it.
I pumped in the NICU to provide him the milk that I intended him to have. Although we were always trying bottles and then baby food, it was apparent at eight months that I had better start focusing on what my child with a feeding tube was going to be eating for the majority of his nutritional needs.
Monitoring a child's food needs is an ever-changing process, and at times I have certainly felt that giving the physician prescribed formula was just the easier way to go. But when I have the time and energy to give it my focus, I know that giving him blended whole foods is something helpful that I am adding to his life.
by Michele Juda
Yeah, you would--or would you?