Skip to main content

Motor delays? What motor delays? (Tues 6-8-10)

I'm pretty sure that's what the PT from the early intervention program is going to say when she comes to work with Raya next week. :)

As you can see, the physical therapy we've been doing every week for the last 3 months has been very effective & beneficial. :) Her neck still has room for improvement but is getting better, and she's age appropriate in almost everything else. Her one big delay now is that she is completely and utterly unable to roll to the right. Not from tummy to back or from back to tummy. She's totally proficient at both when she rolls to the left but just can't figure out how to roll to the right. The little stinker is going to be crawling any day now though, which we were not anticipating at this age. Even her current level of mobility has made things interesting since she's tethered to her feeding pump for 16 hours a day. :)
She started feeding therapy last week with early intervention and I have high hopes for that. Tube feeding has been a blessing and a curse for her, as it apparently is for a lot of kids who are tube fed. She's growing & her health overall is great compared to how she was 5 months ago but the trade-off is that she has very little interest in putting anything but toys in her mouth. When we try to feed her, she doesn't really try to spit food out but she doesn't try to swallow it either. She is probably lacking some of the normal oral sensation and I can imagine that vomiting 2-3 times per day has probably dulled her sense of taste and may make it unpleasant to swallow anything anyway. You can tell in the picture that her tongue is kind of sticking out of her mouth too. It does that a lot these days. The tube feeds are a necessary trade-off and definitely worth it, but the feeding therapist warned me that we still have a long road ahead before she'll be eating enough orally that she won't need the tube anymore. I must be pretty naive because even after 5 months of being told that we'd be doing this for "a while", I still didn't comprehend that when they say "a while" they're talking in terms of possibly years and I'm thinking weeks or months. We're still kind of in the discovery phase but I feel like we're getting close to more of a maintenance phase.

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 …