Skip to main content

Moving

I hate moving. In a lot of ways, moving a long distance is much easier than moving across town, which is what we're doing next week. We've done both and although both were stressful, everyday life doesn't pause while you pick up and move a few miles. I feel like today has been the calm before the storm. It was the first day this week that we didn't have some kind of appointment or somewhere that we had to be other than taking the kids to school. Next week is going to be downright insane. We have 3 appointments, one of which is a huge deal, one will take an hour of driving both ways and be at the clinic I hate the most, and the other will determine whether or not we have to make some big changes with food. Donny will be working late into the evening until moving day and somewhere in there, I have to remember to feed everybody. We're really excited about the move, just not excited to do it. I really hope she'll start taking naps again when we move because she hasn't had one the whole week and I REEEEEEALLLLY miss her taking naps.
Last night I woke up to the sounds of the IV pole clanking against things as Raya tried to escape from the bedroom. I got up and asked her what she was doing and she started crying and said, "You need to unplug me!" meaning that she wanted me to disconnect her from the feeding pump so she wasn't tethered to the IV pole. Donny put her back in bed but a little while later, I woke up again when she flung her 2 fleece blankets onto my pillow and bounced into bed with us. I never thought that would happen. She's not generally a snuggler. She still wasn't though. If I touched her, she got mad. It's an unspoken rule with her that physical contact is on her terms or not at all. She's a restless sleeper and it was NOT a restful night for any of us but I didn't want to put her back in bed because I didn't want her waking everybody else up screaming.
Speaking of screaming and moving, I don't think the rest of the neighborhood will miss us when we go if for no other reason than the animalistic screams that come out of Raya when I'm buckling her into her carseat against her will. Today she hit pitches I've never heard her hit before and kicked my seat halfway to school to pick the kids up. Kaida plugged her ears the whole time we were driving. It was bad. If we'd been in a parking lot somewhere, passers by would have thought I was trying to abduct her with the way she was kicking and screaming and trying to get away from me. And it was all over the fact that I wouldn't let her bring Legos in the car. Whenever it's time to go somewhere or for her to go to bed, she suddenly HAS to find the perfect toys to bring with her and if we don't let her take her time and do what she wants, she throws a fit. (she throws a lot of fits because children don't rule this house :) She wanted to bring Legos and I didn't let her for 2 reasons: 1. that would have put her in control, and 2. she would have had them in her mouth the whole time because lately, everything small goes in her mouth.
Everything is a power struggle with her these days. And yes, that's fairly typical of a child her age but she is not my first almost 3 year old and she takes it to a whole new level. This morning she wanted something to eat so Donny offered her a Nutrigrain bar. He reminded her to say "please" and then held her food for her for the next 10 minutes while she refused to make eye contact with him. Finally she said it. He handed it to her and asked her again, "What do you say?" but she wouldn't say "thank you" either. He couldn't back down at that point or she would have gotten her way, so it turned into a standoff that eventually resulted in Raya going to bed but not going to sleep. I really hope she starts napping again once we move.

Comments

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 …