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Diagnosis

Here's Raya's list of diagnoses:
*Failure to thrive (FTT) -she's outgrown this diagnosis thanks to the feeding tube
*Poor weight gain -she's outgrown this one too
*Reflux/GERD
*Torticollis (Congenital Left Torticollis)
*Plagiocephaly (Also congenital, not positional; corrected by DOC Band)
*Chronic vomiting
*Feeding/oral aversion
*Dysphagia
*Deep laryngeal penetration during swallow (i.e. failed swallow study)

There may be others that her doctors haven't shared with us and we're still looking for that "golden diagnosis" that will explain some of her other issues, like the chronic vomiting, which is currently our biggest challenge.

Update 10-5-10:
Raya's neurologist has now added to the list:
*Cerebral palsy (spastic diplegia, affects primarily the lower extremities)
*Sensory processing/integration dysfunction/disorder

Update 12-21-10:
*Visceral hyperalgesia
Raya was evaluated by a world-renowned motility specialist at Nationwide Children's Hospital in Ohio, and it is his opinion that Raya's unexplained GI symptoms are probably being caused by her sensory processing disorder. It seems that her GI tract is extremely sensitive to "visceral sensations" and when she experiences things like nausea, excess gas, feeling full, etc., her body overreacts to those sensations. For a full explanation of our visit to Ohio, click here.


Update 8-23-11
*suspected rice allergy and possible dairy allergy

Update 1-5-12
*possible chromosomal defect, hopefully we'll find out more at our appointment with the geneticist at the end of the month.


Update 1-25-12
*Duplication on 18th chromosome at 18p11.31 of unknown significance


Update 5-12
*definite dairy intolerance and/or allergy (confirmed by trial of liquid milk, not by allergy test, but girlfriend DEFINITELY can't tolerate dairy products) Update 9-12 *Positive allergy tests confirmed allergies to: wheat, rice, dairy/milk, oats, peanuts, tree nuts, chicken, and shellfish. Update 12-12 *Anxiety, possible OCD, possible ADHD; anxiety & stress from moving in September & starting preschool in November wreaked havoc on her motility

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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. :)
The idea behind a weighted blanket and other heavy work activities is that when the child gains greater body awareness through proprioceptive input, the nervous system can be calmed and the need for constant fidgiting, moving, jump…

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 …