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Monday, September 6, 2010

Mobility, slight overkill, and feeding therapy (Fri 7-9-10)

Since Raya discovered that she can, in fact, leave the carpeted living room, she has been exploring the house. It kind of drives me crazy because she doesn't like wearing her backpack so usually she gets to the middle of the kitchen & then stops and cries until somebody comes & rescues her. Over the last couple of days though, the big kids have decided that Raya is kind of like a little puppy. One of them will pick up her backpack and carry it behind her while the other one tries to coax her into crawling into their rooms (since they're not allowed to carry her). Many times I've found her like this:

I have to admit that it's been really nice to have them entertain her and her entertain them. Ashtyn likes to put pillows behind her and a blanket over her lap and play house with her. They're learning to watch & make sure that Raya's tube doesn't come unplugged from the pump bag and as long as she's happy & they're happy, I'm okay with it. :)

And speaking of pump bags, when we switched to the new pump last month, the home health company didn't send us enough bags for the month. When I got back from Idaho, I called & told them what had happened & asked if they could send us enough to last until we were able to make our next order. The lady said they were out of the 500ml bags that we usually get so they'd send us 5 of whatever they had available. I kind of forgot about that part & was just relieved that we were getting more bags until this came:

Slight overkill indeed. She only gets 224ml at a time (56ml/hour x 4 hours at a time), so 1200ml bags are ridiculously huge for her. 1200ml is more than she gets in an entire day and this bag doesn't even fit in her little tiny backpack so it's been a challenge using them. BUT, of course we are grateful to have a reliable way to get nutrition into her since trying to feed her by mouth is a joke.

And speaking of feeding her by mouth, now that we're home, I've been working diligently to help her learn to eat. It's amusing, frustrating, messy, cute, sad, and did I mention messy? Since the vomiting has increased in frequency over the last 2-3 weeks, her aversion to anything being put in her mouth has also increased. She rarely takes a pacifier at all anymore unless she's almost asleep when I give it to her and most of the time, if I try to put something in her mouth, she gags & throws up. (her gag reflex has gotten stronger too) She's had 2 appointments with the feeding therapist and we've gotten some helpful suggestions from her. One of Raya's FAVORITE things in the whole wide world right now is this:

my Oral-B Cross Action battery-powered toothbrush. Who knew. :) She LOVES it and will chew on it for several minutes at a time before she accidentally flings it across the room. It's entertaining for me too because it makes funny noises when she chews on it. :) We start out a feeding (if you can call it that) with a few minutes of her playing with the toothbrush. Then I dip it in whatever food we're trying (yesterday & today it's sweet potatoes) and let her chew on it with the food on it to give her a taste. She makes a funny face but since she likes the toothbrush, she keeps going. After she starts to seem bored with it, I get out the medicine dropper and/or syringe and put 1 tsp of food in it. Then I spend the next several minutes trying to get her to let me put some in her mouth without being too forceful and without touching her tongue, which inevitably ends in gagging & vomiting.

She closes her lips and turns her head:

(please ignore the crusty helmet-head) and eventually sometimes I can get her to let me squirt food in her mouth:
Sometimes she even swallows it. On a good day, we get a full teaspoon in and on a really good day, 2 teaspoons. If she lets me squirt food in her mouth, then I give her back the toothbrush for a few minutes and then try a spoonful to see if she gags & throws up or not. Then we wait for a few hours to see if there are any adverse reactions. So far she's tried pears, applesauce, peas & sweet potatoes and 3 out of the 4 have had very unpleasant side effects for her. The peas were fine, she just hates them.

Some days I wonder why we're bothering with this right now. Since she's still throwing up as much as she has been, it's unlikely that she's going to get over her aversions anytime soon so part of me would rather wait until we figure out why she's throwing up & get it to stop before we try to feed her solid food. Then there's the part of me that realizes that she's going to be 8 months old tomorrow and most babies her age eat a wide variety of foods and are starting to pick up food & feed it to themselves already and she wants nothing to do with any of it. So we'll keep plugging away and experimenting with different foods & flavors and maybe we'll find something that she likes. Until then, at least there's this:

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