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Happy Birthday Raya!

Good morning, Birthday Girl!!

This was part of our ridiculous attempt at taking birthday pictures. Someone was slightly uncooperative. :)
One of the better attempts. :)

My favorite one of the day, even if she is playing with her extension tube. :)

♥Happy birthday, dear Raya♥

Hmmm...not sure what they expect me to do with this thing but at least it's fun to play with. (PS the frosting on her lip was from Mommy, not Raya)

Raya was nice enough to share her birthday cupcake with Mommy. It's a step in the right direction. :)

Me & Ray-rays :)

Daddy & Raya, the girl who won't eat food but loves to chew on electronics

Well it's been one heck of a first year. Raya's first year of life has tested us in ways that we've never been tested before. This girl has probably had more doctor/therapy appointments in one year than I've had in my whole life. I've driven about 1,500 miles this past year just driving to appointments. She's spent a total of almost a whole month in the hospital and has undergone more tests than I can count (without getting out my notebooks, Raya: volumes 1, 2 and 3, that I write everything down in) and has spent a lot of her life not really feeling good. In spite of all of the craziness she's been through in her first year, she is one of the happiest babies I know and is such a sweet girl. There is a very big personality packed into that cute little body.
She loves to "sing" (more like yell) and "dance" (wiggle) to music. She waves and says bye-bye, which she learned during her 2 weeks at the hospital from all the people that were in & out of her room all day every day & said it to her. She loves Mommy but she LOVES Daddy and she LOOOOOOVES her big kids. She hugs a lot and if she's in the right mood, I can get her to give me a kiss (which is HUGE for a kid with as much of an oral aversion as she has). She's pretty headstrong and a lot of what we do with her has to be on her terms (or else Mommy has to sit on her to get it done, like change her dressing & hook/unhook her extension tubes or change her diaper :). When she's being poked & prodded at her appointments, she's not shy about letting the whole world know what she thinks about it but she's always very quick to forgive once it's over. She doesn't forget though. :)
I had hoped we'd be closer to a diagnosis & resolving her problems by her birthday than we are but I'm so grateful for the team of people that have gotten her to where she is and helped her to be the happy & healthy little girl that she is. Believe it or not, she's our biggest 1 year old. She's beating out Cole by over a pound and Kaida by about 5 pounds. :)
We are so grateful to have Raya in our family and for everything we have learned from her. And we're hoping that year 2 is less turbulent than year 1. :)
(and how fitting that this is the 100th post on Raya's blog :)


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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 …