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The Beginning

Raya's challenges started pretty much at birth. She was born on 11-10-09 at 39 weeks and 6 days. Her birth was quick & without complication and she was precious & perfect. After some discrepancy between scales, we decided that her birth weight was 6 lbs 13 oz. I noticed while we were still at the hospital that her soft little head was tilted to the left and her head was a little bit crooked, just like her older sister's had been. I didn't worry about it too much then, I was just excited to have her. :)
Although she learned to nurse fairly quickly, it was a bit of an effort to keep her awake and interested long enough to eat. It wasn't more than a day before the spitting up started. We anticipated it based on the fact that our other 2 daughters had been very spitty-uppy. Our oldest daughter didn't stop spitting up until she was 18 months old and our 2nd daughter was on Prevacid for her reflux for 10 months. She also had a lot of trouble gaining weight. We assumed that Raya would probably have the same issues as her sisters so it wasn't a surprise that she did.

There were a lot of surprises with Raya though. She spit up a LOT. She cried for HOURS at a time. She vomited. She could projectile vomit 4 feet. When I took her in for her 1 month check-up, she was still teeny. She weighed 7 lbs 8 oz. I was okay with that because she was exactly the same size as her older sister was at 1 month. Because of the experiences we had had with her, I asked the pediatrician for Prevacid. She was on it for 1 month with very little change. She still threw up, still spit up, still cried for hours and still didn't get much bigger.

In January 2010, I decided that I needed to do something different. What we were doing wasn't working, so I started researching remedies for reflux and came across information on an elimination diet. It is what it sounds like. I pretty much eliminated EVERYTHING that could possibly bother her out of my diet and for almost 2 weeks, I ate turkey, rice/rice milk, potatoes, sweet potatoes, zucchini & yellow squash, and pears. That was it. It was hard, but I felt like it was something I had to do. I took her in for her 2 month check-up. She weighed 8 lbs 8 oz. She hadn't yet gained 2 lbs since birth. I told the pediatrician that I didn't think the Prevacid was working as well for her as it did for her sister and asked if we could do something different. Her response was that since all of the reflux medications were off-label for infants and because of all the symptoms she was experiencing, she would feel more comfortable if we saw a pediatric gastroenterologist.
That afternoon I called the GI doctor's office & was surprised to get an appointment the next morning. What an appointment that was. Since it was short notice, I had to take the other kids with me. My darling son had been up since 5 that morning and his little sister had been up since 3:30. They were bouncing off the walls and I was frazzled by the time the doctor came in. I expected that we would talk about Raya's symptoms and then she would write me a prescription for a new antacid and we'd be on our way. Didn't happen that way. :)
To put it bluntly, she scared the crap out of me. She was very direct and didn't waste any time in asking me her barrage of questions. What do you feed her? How often & how long? Do you supplement with formula? Do you water down her formula? How often does she spit up? How often and how much does she vomit? How far does the vomit go? Why did you eliminate all that food from your diet? Have you tried adding rice cereal? And on and on. I felt like I was being interrogated but tried not to take it personally because I knew that she was looking out for the best interest of Raya. After she had asked all of the questions, she had me lay Raya on the exam table. As soon as she unwrapped her, she said, "This baby is underweight." She looked in her ears, tested her muscle tone, checked reflexes, and pinched her inner thighs. After she had examined her, she said, "Your baby is very underweight and malnourished and I'm very concerned. In fact, I'm thinking about sending her to the hospital right now for some testing." I was not expecting that at all and was very grateful when she decided to give us 4 days over the weekend to try and get some weight on her. We were to come back Monday and have a weight check.
Monday came and instead of gaining 4-6 oz like the doctor wanted, Raya had lost an ounce. Her vomiting had increased significantly over the weekend. I thought she would send us straight to the hospital after that but she wasn't around. I hadn't heard from her by 8:00 that evening so I figured she'd call the next day and I took a shower. As soon as I got out of the shower, the phone rang. The doctor was concerned that Raya would start to get dehydrated with all of the vomiting she was doing and asked me if I wanted to bring her in that night or wait until the morning. We made arrangements for the other kids, Donny and our friend Scott gave her a priesthood blessing, and I headed for the hospital with her.


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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 …