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OT, Textures, Walking, and G-tube Feeds

I took the camera with me to OT yesterday and I'm glad I did. Raya was in a good mood and was very cooperative. :) Here are some of the things she did at her appointment yesterday:
Hugged the 2lb medicine ball while trying to decide whether to keep holding the block or put it in the giraffe and ignoring Ms. E who was trying to get her to touch the soft, fuzzy board.

Rubbed the sandpaper board. Became obsessed with the sandpaper board. She LOVES rough textures.

Stood on the sandpaper board while trying to get the silly putty off her hand and trying to decide how she felt about the silly putty. The sandpaper board was like a little sanctuary for her while she tried things she wasn't sure about.

Playing with drums while avoiding Ms. E's request to touch the soft fuzzy board by standing on the sandpaper board instead.
FINALLY touched the soft fuzzy board! You should have seen her reaction to the smooth hardwood floor board that's touching her feet. She wanted NOTHING to do with it.

Being rewarded for her hard work (i.e. touching the fuzzy board) by getting to play with the drums. If only Ms. E wouldn't put silly putty on top of them. :)
So far, OT is going great. Most of the time, Raya doesn't realize that the person playing with her is actually pushing her to test her limits and making her work. (not the case with PT. She totally gets that the PT is working her! :) She definitely has reservations about touching certain textures. Watching her at OT is interesting. It's amazing to me the lengths she will go to to avoid certain textures and to seek out others. I think we had about 6 different texture boards out and the one that she wanted to sit on to play was the sandpaper. Of all the pleasant, comfortable things available to her, she wanted the rough, scratchy sandpaper. I can't imagine kneeling on sandpaper with bare feet but she seemed really comfortable on it. When she touches some of the other textures, like the hardwood, her reaction is what can only be described as fight-or-flight. She backs up and moves away like a cat avoiding water. It's very interesting to watch. She loves to hold heavy things like the 2lb ball, and she loves to put her hands & fingers into holes of any size she can fit them in. (like the hole in the middle of dvds)

In other news, for the last week or 2 she's been walking pretty much all the time. She doesn't crawl much at all anymore. She walks a little crooked & usually has her left hand up to help with her balance but she's doing really well with it. A few months ago I'm not sure that we expected this much out of her at this point. :)

You can tell that she's concentrating on something other than walking because her torticollis looks really bad in this picture. Her tilt always looks bad when she's concentrating on something new. :)

Always yelling about something. :)
G tube Feeds
I did a new experiment today with her feeding schedule. Normally, we mix up a full 24 hours' worth of formula every evening and add in the additional 320ml of water that her doctor wants her to have. That way we have the whole day's worth in the fridge and when it's gone, she's done for the evening. It's much easier to keep track of that way & a lot less work not having to mix up formula all day long. Anyway, last night I mixed the formula but didn't add the extra water. We fed her overnight like we usually do and Donny turned off the pump before he left for work around 5:30. At 8:45 I started with a 30ml bolus feed of water through her G tube. 30 minutes later I gave her another one. I did 6 of them in a row every half hour for 3 hours. After I thought she'd had enough time to drain the water from her stomach, I resumed her formula feed in the J tube with the feeding pump and put her in bed for her nap. After she woke up, (from a 3 1/2 hour long nap!) I waited for her to run out of formula and then gave her the rest of the water she needed for the day 30ml at a time every half hour. It went REALLY well. I was surprised. I even put 20ml of formula in one of them and she did fine with that too. There was one time in the morning when I thought she was going to cough too hard & then throw up but she didn't. She almost threw up with the last feed in the evening too but she kept it in. I'm not holding my breath until we have a little more success with it but this is a step in the right direction. At least we know she can "drink" water without puking.


  1. That is awesome! I hope you r starting to move the right direction. I tried with Aly smaller meals more frequent and she did better on that then the big meal. I noticed less puking. I haven't done it all day just in the morning time. The days we have PT. I am afraid it would be to much work to do it all day long. But I do need to try it just to see how she does over all. Good luck!


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