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How far we've come...

Where we started:
2 month old baby that weighed 8 lbs 8 oz (smaller than a lot of babies are when they're born), was malnourished, had no body fat and was miserable

When I took this picture I thought, aww, what a cute baby! Now when I look at it, it brings tears to my eyes because I just see a tiny, sick little girl whose eyes are asking for help. Dramatic of me, I know. :)

Raya had her 1 year well-check yesterday. It made me wonder if other moms of medically high-maintenance babies feel the same way that I do about well-checks, like that they're kind of silly and a waste of time other than getting immunizations. :) It also reminded me to be grateful for how incredibly efficient Raya's GI doctor's office is because we waited forEVER. It didn't bother me too much though because I had scheduled her PT for 9:00 and the doctor's appointment for 10:00 so I knew I'd have plenty of time to get from one to the next because they'd be running behind. :)

Anyway, here's the stats:

weight: 21 lbs 6 oz (9.695kg) 51st percentile
height: 30 inches, 73rd percentile (pretty sure that's incorrect, she's not that tall)

She's definitely our biggest baby. She outweighs Cole at 1 year by 1 lb 6 oz, Ashtyn by 3 lbs 9 oz, and Kaida by a whopping 4 lbs 10 oz. (She's only about 5 lbs behind Kaida right now & they're 2 years apart. :) Raya would have a great college fund going if I had a dollar for every time someone has looked at her and said, "If I didn't know better, I'd never guess she has any problems!" or "Oh, after reading her medical chart I wasn't expecting to see a healthy-looking baby." :) Looking at her now, you'd never guess that she was labeled with failure to thrive and poor weight gain. Tube feeding is definitely a blessing and a curse and sometimes it feels WAY more curse than blessing, but you can just look at her and see why doctors turn to tube feeding for their patients.

Fast forward to the present:

Big ol' 1 year old who looks pretty darn healthy if you ignore the bottle of stomach contents draining from her G tube and a big lumpy Mic-key button under her shirt! :)


Popular Posts

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 …