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Showing posts from January, 2011

Sensory Processing Disorder: How to make a weighted stuffed animal

I guess I should first explain WHY anyone would want to make a weighted stuffed animal, shouldn't I. :)

Here's the condensed version as I understand it, which hopefully isn't too far from the truth. :) Kids with sensory processing disorder (aka sensory integration disorder/dysfunction, sensory regulatory disorder, sensory processing dysfunction, etc.) have difficulty interpreting the sensory input that they receive from their bodies. It is manifested in many different ways and differs from person to person. Things feel different to them than they feel to the rest of us. If you want a more detailed description, click here or here.
One of Raya's sensory things is that she likes to squeeze things. It's a "sensory-seeking behavior", meaning that she is craving strong sensory input. She likes to hug stuffed animals and she pats really hard. (sometimes it hurts when she pats us while we're holding her) She also likes to hold and carry heavy things. Accordi…

And just like that, the bleeding stopped

Thankfully, whatever was bleeding in Raya's stomach was kind enough to stop on its own so that we didn't have to do anything unpleasant like go have an endoscopy. I'm not sure what caused it. My only theory is that she must have gotten her tube caught and tugged on a little bit and it irritated the inside of her stomach and made it bleed. The tissue around the tube can be very delicate and even though there's no granulation tissue on the outside right now, it doesn't mean there's none on the inside. We learned that the hard way. :)
OT is going well. I think going to OT is just as important, if not more so, for me than it is for Raya at this point. With us only going once a week, it really doesn't benefit her unless we are able to continue with the activities at home. It would be like only exercising once a week. Unless you exercise more frequently so that your body can get used to what you're doing, it is very difficult to make progress. I feel like at t…

Bleeding again

**Warning: Gross picture of Raya's stomach contents ahead!! Don't say I didn't warn you!**
So on Thursday I had the bright idea to email Raya's nurse and tell her that things were going pretty well aside from having to stop bolus feeds for a few days because she wasn't tolerating them. Of course a couple hours later, I got a text from Donny while I was gone for the evening saying that there was a bunch of bloody stuff coming out of Raya's stomach drainage tube. Sure enough, when I got home this is what it looked like:


I hadn't expected it to look so red. When she had this problem before, everything that came out was more brownish. This looked more fresh. We didn't feel like it was anything to really worry about, we just watched her closely yesterday and today. Everything that drained out yesterday was still a brownish color (kind of like apple cider, sorry to ruin apple cider for you :) and today it's getting back to more of her usual colors. Obvious…

Another thing Raya doesn't like...

Sand. She pretty much hates it. Either that or she's a little scared of it. I wish I'd had my camera with me. She wanted to go where the other kids were playing but once her bare feet got a little feel of that sand, there was NO WAY she was getting in it! She stayed on the sidewalk, which she seemed to really love. She loved it so much that she kept laying down on it. We'll add sand to the list of things she doesn't like yet. :)

OT

Raya officially started OT today. The whole OT thing is pretty foreign to me. In some ways it's similar to PT but the goals are very different. Raya's OT goals are all about helping her to gain body awareness and reduce her tactile defensiveness.
I know I keep saying this but somtimes I still have this internal struggle about whether or not Raya really does have issues or if it's just me imagining things or making mountains out of mole hills. Since I'm with her all the time, I'm used to some of her quirky little behaviors so I forget whether they're normal or not. Occasionally little things happen that validate my feelings that her "quirks" are more than just simple little things that will go away on their own and I'm grateful for that because it makes me feel not so crazy.
Okay, so anyway, our OT session today was one of those things that makes me feel better about putting Raya through all the therapies that I drag her to. Her OT started out by…

Bummer.

To summarize the week, the bolus feeds did not end up going well. Each one got worse and I stopped giving them to her all together since she was tolerating them less each time. Back to the drawing board, I guess. Last night was a terrible night for her too. She was coughing/gagging/choking pretty much from 11:30 to 11:50. The stuff she threw up smelled funny but since it was on her dark brown pajama shirt I couldn't tell what it looked like. Everything that came out of her tube yesterday was kind of an off color that isn't in her usual range and there were little flecks of blood in it. Hopefully today will be a better day for her.
On the bright side, her feeding therapist is coming today and she might get to officially start OT today too.

I'm so confused.

I can't figure this girl out. The first bolus feed went great. The second one didn't. The third one went ok, the fourth one was as bad as the second one only worse because I was doing all the right things so it SHOULD have been fine but wasn't. Ugh. She threw up 5 times today, which in and of itself isn't a huge deal but every time she's thrown up, there's either more stuff coming out than normal or else her stomach is contracting so hard and for so long at a time that her whole head turns beet red and she can't take a breath until it relaxes. It would be nice if there was something I could put my finger on that's causing the increase in problems so I could fix it tomorrow.
On the bright side, she had another good PT session today and has really warmed up to her therapist. Huge relief for me since the first 3 sessions, all Raya did was cry and try to get away from her. She'll let her PT do stretches with her that she won't do for me and vice ver…

SUPER exciting!

So this morning I was awakened every 10 or so minutes for 2 hours straight by Raya's gagging/vomiting/dry heaving. From about 5-7 she just kept throwing up. (I don't know if throwing up is the right term since nothing was coming out but there's still a difference between her dry heaving and the times when you know something would come out if there was anything in her stomach. TMI.)
ANYWAY, I figured that since that's about the worst morning she's had in a while, today was as good a day as any to try a gastric bolus feed. (FYI a bolus feed is when you give a larger amount over a short period of time)
Since we know that her stomach can clear 2 ounces in 2 hours, I thought that would be a good place to start. I waited 2 hours after I had turned off her night feed and then sat her in the high chair. I had never done a gravity feed before (that means letting gravity push the formula in) so it was really awkward and she kept grabbing things and almost made me spill. As…

A few of my favorite things...at the allergist's office

Raya had her follow-up with the allergist today. This is how it went:






 After all of that fun, the allergist, whom I love, came in and apologized profusely for the long wait. It was okay, I've come to expect it. We discussed the results of our visit to Ohio and I updated him on the medications she's on & the adjustments we're making to them right now. I explained the plan that the GI doctor & I discussed on Monday and how allergy testing will fit in to that.
Our plan is that I'll talk to Raya's feeding therapist and probably the GI nurse and come up with a list of 8-10 single ingredient foods that we want to test. Then in 6 weeks at our next appointment, I'll bring in small amounts of each of the foods and we'll do fresh food scratch testing with them. That means they'll take a little poky thing (technical term :) and dip it in the food and then scratch her skin with it and then we'll wait a few minutes and see if she has a…

Breaking in the new insurance

Our insurance changed on 1-1-11 and I was just grateful that we didn't have to use it until January 3rd. :) After a really rough day on Sunday (as in, back to vomiting 4 times that day, all the G tube drainage being bright yellow & green again, not napping at all or only for 15-20 minutes at a time in the stroller, waking up screaming and vomiting, and sleeping the entire night in the stroller in the living room) I emailed the nurse late Sunday night and told her that we would love to come in before January 13th when our next appointment was scheduled. I listed the reasons why, among which was my concern that the new GJ tube she had put in while we were in Ohio is smaller than the old one and asked her if there had been any cancellations between now & the 13th. She emailed me back yesterday morning and asked if we could come in at 4:15 so we did. Luckily I have nice friends who let me pawn the other 3 kids off on them on very short notice. :)
Whatever progress we had made …