Skip to main content

Happppppppppy New Year!

Happy New Year! With the kids all having lingering colds, we didn't make any big plans this year. Not that we do any year, really... We put Raya in bed at her normal bedtime, got some Japanese food, let the big kids stay up watching movies and playing games with their Aunt Holly and Uncle Adam, and went over to a neighbor's house to watch them light fireworks. They're legal 4 days a year here now. :) After we put the big kids to bed, Raya woke up again not feeling great (stupid cold) so we brought her out into the living room to watch stupid YouTube videos with us. She rang in the new year snuggling with her daddy. Uploaded from the Photobucket Android App Today we took down all the Christmas decorations. I gave myself permission to take the day off from school work and get some much needed cleaning and organizing projects done. I never get as much done as I'd like to but it was still a very productive day. When it came time to take down the ornaments from the tree, I got to one and had to pause for a minute. I put it on my lap and just stared at it, trying to decide how I felt about it this time. Here it is: Uploaded from the Photobucket Android App See what I mean? I remember picking that ornament out at Target. I had a sweet, tiny little 2 or 3 week old baby who needed a Baby's First Christmas ornament from her parents. All the other ones I saw were not cute. They were actually kind of ugly or else they didn't have the year on them, and I wanted the year on it. Then I saw thIs beautiful, shiny silver spoon with sparkly pink rhinestones on it. It was perfect. Before Raya was born, her big sister wanted to name her Sparkle. That's what we all called her right up until she was born. (Well, more like right up until the day after she was born when we finally picked a real name for her.) so the shiny Spoon with the sparkly pink rhinestones on it was perfect for her. I bought it with joy in my heart and brought it home to put on the tree. I think we even have a picture of me helping her put it on the tree. Things weren't going great for her that Christmas but we had NO idea, not the slightest inkling of what was coming in the next few weeks. When the next year came, I was too stressed with trying to keep up with her feed/med schedule, the other 3 kids, the house, the husband, and trying to get ready for our trip to Ohio that I don't even remember noticing the irony that year. Or maybe I've just blocked it out. Last year, I got it out of the box and laughed with a tear or two in my eyes. This year when we decorated the tree, the kids were "helping" me and we all shared a laugh about Raya's spoon ornament. The big kids are old enough now to understand why it's funny. Today though, I took the ornaments down by myself while the kids took an unwanted but much needed rest. When I picked up the little spoon, I couldn't help but think about everything that's transpired in the last 3 years. It's hard to put the feelings into words. In the beginning, I thought we'd be able to figure out what was bothering her within a matter of weeks, change formulas, change reflux meds, or do SOMETHING to make her feel better so she could keep things down, grow, and eat on her own without a tube. (Things obviously didn't happen that way.) At other times, I wondered if I would EVER get more than 2 or 3 hours of sleep at a time without someone crying or something beeping at me. Thankfully that did happen. Back then, I thought that things would be a lot different by now than they really are, and that's hard. Life is good and we're certainly in a better place now than we were a couple of years ago, but as I stared at that little silver spoon, it hit me again that we still have such a long way to go before Raya will be a 100% oral eater. At the same time, I wondered as I packed it carefully away where we'll be at next year when we get out the ornaments to decorate the tree. Maybe she'll be down to 50% tube feeds, or maybe she'll only be using it for meds and extra fluids. Or maybe she'll still be at 90% tube feeds. Only time will tell, but the numbers aren't important, and neither is whether or not she's fed by tube or fed by mouth. The important thing is that she is healthy and happy. The new year is always a time of mixed feelings for me. I'm sad that another year has come and gone and my babies are growing up so fast. If it was a good year, I don't want it to end because the next one might not be so good. If it was a hard year, I move forward with a prayer in my heart that the next one will be kinder to us but worried that it won't, and that's where I find myself going into 2013. We have dealt with difficult things this year that we had never faced before, and although we were tremendously blessed throughout the year, the lows of 2012 are things that I do not wish to repeat or outdo in the coming year. With a hopeful heart, we say goodbye to 2012 and hello to 2013, ready or not!


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 …