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Glossary of Raya

Here's a list of words that we have learned since Raya was born. I'm sure there will be more added to it. :)
Aspiration: Accidental introduction of food or liquid into the airway.
Bard button: Low-profile G tube device. Small & easily concealed but doesn’t have a locking device to keep the extension tube from coming out of the button. (
Bolus feed: A larger amount fed over a short period of time. Can be done by gravity or with the use of a feeding pump.
Cerebral palsy (CP): An umbrella term for a group of motor conditions that cause physical disability and difficulty with movement. Caused by damage to the brain that can happen during pregnancy and/or birth. CP is not progressive or degenerative, meaning that it will not continually get worse over time and can improve with therapy.

Continuous feed: Small amounts of formula fed slowly over an extended period of time.
Duodenum: The first section of the small intestine.
EGD: Esophagogastroduodenoscopy, which is a fancy word for endoscopy.
Endoscopy: A procedure used to visually examine the upper digestive system with a tiny camera on the end of a long, flexible tube. The camera is inserted through the mouth. Pediatric patients are sedated for this procedure. ( )
Enteral nutrition: (enteral feeding) When food (in liquid form) is delivered directly to the stomach or intestine through a feeding tube. (
External digestion: In Raya's case, external digestion involved draining all of the gastric fluid from the stomach and then injecting them into the jejunum (when she had a GJ tube). This allowed her to get some of the enzymes and electrolytes that are in the bile but helps to keep her from repeatedly throwing it up which is uncomfortable for her and potentially harmful to her esophagus and mouth. We tried it for a couple of weeks but it gave her such horrible blistering diaper rash that we had to stop refeeding the bile.

Feeding therapy: A therapy that helps children with feeding disorders to learn how to eat. Children who exhibit food refusal behavior, are selective of food by texture, have difficulty swallowing, have developmental delays, and GI problems are some of the groups that can benefit from feeding therapy.

Feeding pump:  A pump that delivers formula through a feeding tube. It can be programmed to deliver the desired dosages over a specific period of time. The two that seem to be most common for home use in the US are the Kangaroo Joey and the Zevex Enteralite Infinity. For a comparison of the two pumps, see here.
Gastroenterologist: A doctor who specializes in the study & treatment of diseases of the digestive system.
Gastroesophageal Reflux (GER, GERD, GORD): The medical term used to describe a condition in which stomach contents - food and gastric acid - frequently flow back up out of the stomach into the esophagus. (
Gastrojejunostomy tube (GJ tube, GJ button): A feeding tube that is inserted through the abdominal wall with one opening in the stomach and an additional tube that goes past the stomach into the jejunum (a segment of the small intestine). (
Currently MicKey is the only company that makes a button-type GJ tube, but AMT will be releasing one in 2012.
Here is a picture of one of Raya's used GJ tubes (hence the brownish tint :)
The black-ish stripe down the long part of the tube is what makes it visible under x-ray.
Gastrostomy tube (G tube, G button, PEG tube): A feeding tube that is inserted through the abdominal wall to allow access to the stomach. There are several different kinds of G tubes. Some are held in place by a bumper or disc that is larger than the opening in the abdominal wall and some are held in place by a balloon that is filled with water. The two that seem to be the most popular/common are the MicKey button and the AMT button. Both are low-profile buttons but the AMT is slightly smaller and the balloons are a little bit different in shape & size.
Granulation tissue: Tissue that develops around the edges of the stoma (hole where the G tube enters the abdomen). Granulation tissue is often red and painful and bleeds easily. It can be caused by the friction of a poorly fitting tube or a tube that is not well-stabilized. (
Jejunum: The jejunum is the middle section of the small intestine. (click here for diagram) 
Jejunostomy  tube (J tube): A feeding jejunostomy tube, also called a J-tube, is a tube inserted through the abdomen and into the jejunum (the second part of the small bowel) to assist with feeding and to provide nutrition. (
Mic-key button: A low-profile tube feeding device that allows the extension tube to lock into place. This helps prevent accidental leakage due to the extension tube coming unplugged.  It is held in place by a balloon on the inside of the stomach that is inflated with water. Mic-key buttons come in both G tube and GJ tube.
Modified Barium Swallow Study (MBS): A test that assesses a patient’s ability to swallow different consistencies without aspirating. Different consistencies of barium are swallowed under a fluoroscope while a radiologist and speech therapist watch the mechanics of the swallow on a monitor. They are able to determine which consistencies are safe for that patient and which ones put them at risk for introducing liquids into the airway (aspiration), which can lead to complications such as pneumonia.
Nasogastric tube (NG tube): A feeding tube that is inserted into the patient’s nostril, through the esophagus and into the stomach.

Nasoduodenal or Nasojejunal tube (ND or NJ): A feeding tube similar to an NG tube only instead of ending in the stomach, the tube is either placed through the nose and stomach and into the duodenum or jejunum (in the small intestine). This allows formula to bypass the stomach in cases where the stomach is unable to tolerate feeds. ND & NJ tubes were NEVER an option for Raya due to the fact that she either pulled or vomited her tube out at least a couple times a week. ND & NJ tubes have to be placed by an interventional radiologist at a hospital, and it just wasn't feasible to attempt an NJ or ND tube with Raya. We later used a GJ tube to accomplish the same goal of bypassing the stomach though.
Nuclear medicine gastric emptying study: A test in which a patient is given food (like scrambled eggs or formula) to eat which contain a radioactive substance. After the food (or liquid) is consumed, the patient is monitored by a scanner that measures the rate at which the radioactive food empties from the stomach. This test is used to identify problems like delayed gastric emptying or rapid gastric emptying. Raya had this done twice. During one, she was strapped to the table under the scanner for the whole hour but during the second one, she was given the radioactive formula and put under the scanner and then scanned again at the 1 and 2 hour marks.
Occupational Therapy (OT): Similar to physical therapy but is focused on teaching the individual to perform meaningful activities of daily life (ADLs). In Raya's case, OT is for the purpose of helping her to overcome the challenges of her sensory processing disorder and help prepare her to learn how to eat and feed herself (if/when she decides she WANTS to eat).

Plagiocephaly: Medical term for misshapen head. Also known as deformational plagiocephaly. Positional plagiocephaly refers to plagiocephaly that occurs when an infant is kept in the same position for extended periods of time resulting in flattening of part of the skull. Raya's plagiocephaly was congenital, or present at birth due to in-utero positioning.
Parenteral nutrition: (Total Parenteral Nutrition/TPN) Nutrition that is delivered through a PICC line or central line when the GI tract is unable to digest food or absorb adequate nutrition.
Percutaneous Endoscopic Gastrostomy (PEG): (Also known as a G tube) The method used for placing gastrostomy tubes. When people refer to a PEG tube, they're most likely talking about a tube that is in the stomach (or jejunum if it's a PEJ) but instead of a low-profile button on the outside, there is a longer tube.
Physical Therapy (PT): A therapy that works to restore function to parts of the body with injuries or restricted movement using stretching, exercise, and therapeutic modalities.

Reflux: See Gastroesophageal reflux
Sensory Processing Disorder (SPD): (Also known as sensory processing dysfunction, sensory integration disorder/dysfunction) A neurological disorder that causes difficulty with taking in, processing and responding appropriately to input from one's environment and one's own body. In other words, the brain misinterprets sensory input which may result in agitation, indifference, distress, fear, confusion or avoidance.

Torticollis: (congenital muscular torticollis) CMT is caused by damage to or a shortening of the Sternocleidomastoid muscle in an infants neck.  Sometimes, but not in all cases,  there is a hematoma (lump) in the muscle where it was damaged.  That lump will eventually go away as the muscle heals and is stretched.  The most common causes of CMT are inutero positioning, lack of space inutero (big baby or little mom), a traumatic birth, multiples (lack of room again!), and low amniotic fluid inutero. (
Raya's torticollis was present at birth and although it is MUCH improved, at 2 years old it is still noticeable.
Upper GI (barium x-ray): A test where barium (a chalky white liquid that can be seen on x-rays) is swallowed in order to identify things like reflux, hernias, blockages or anatomical defects in the esophagus, stomach, and duodenum.

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Adhesives Part 1: Adhesives & Taping Techniques for NG tubes

This series has been a long time in the making. Back when Raya got her NG tube, I had no idea there were so many different adhesives on the market. At the hospital, they had used some kind of fabric tape in a box that had to be cut with scissors and that was the ONLY thing we accidentally left at the hospital. Raya caught her little pinky finger on the tube a couple days after we got home and the only medical tape I had ended up bringing home was Durapore. This tape is VERY sticky, very strong, and definitely not the best option for the tender little cheek of a 2 month old baby. A couple days later, we went to the GI doctor and the nurse saw the tape and told me that Duoderm would be much gentler on her skin and she gave me a couple of 6x6 sheets to try out.
That was the beginning of our trial-and-error process of figuring out which types of adhesives were better for all of the different things we used them for. This will of course NOT be an exhaustive review of every adhesive out the…

Sensory Processing Disorder: How to Make a Weighted Blanket

Lately I've been toying with the idea of making Raya a weighted blanket. She loves heavy things and has a lot of sensory seeking behaviors in regards to proprioception. Translation: she craves sensory input that helps her to gain awareness of where her body is in space, and it takes stronger than average input for her to get the feedback that her body is craving. (or at least that's how I understand it :) She seeks out "heavy work" activities, like carrying heavy things, pushing heavy things around on the floor (chairs, full laundry baskets, etc), and anything that gives heavy resistance to her muscles and joints. Lucky for us, carrying her backpack is a good heavy work activity because the poor kid gets to do that for a few hours a day. :)
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Feeding Tube Terminology: G tube words

One of the many things I didn't have a clue about before Raya got her G tube was the fact that there are LOTS of different kinds of G tubes, all with similar but different features & functions. Some of the terminology that was tossed around in the beginning was very confusing. When I met with the surgeon to pick out a button for when Raya's initial tube was ready to be changed, they pulled a bunch of tubes out of a cupboard, put them down on the table in front of me and said, "What kind do you want?" I had NO idea what to pick, all I knew was that anything would be better than what we had at that point.

Here are a few things I wish someone could have explained to me before Raya got a G tube:

1. What the heck does PEG mean?
PEG stands for percutaneous endoscopic gastrostomy. In other words, a gastrostomy tube is placed through the abdominal wall using an endoscope to visually guide the surgeon to the best location to place the tube. The term PEG is used to refer to …