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**I am not a medical professional and the information on this blog is not to be construed as medical advice of any kind. ALWAYS consult with your child's doctor before making any kind of changes to his/her treatment, feeding schedule, etc.**

Thursday, January 27, 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. According to, "Proprioceptive input is the performance of tasks that involves heavy resistance and input to the muscles and joints, and is essential in helping our bodies assimilate and process both movement (vestibular) and touch (tactile) information."

So basically, giving her activities that compress her joints and make her use her muscles is one way to give her body the input that it needs in order to start recognizing and processing sensory input correctly. At her appointment this week, her OT gave her a stuffed animal to play with that had 2 lbs of weight in it. She was SOOOO excited about it and carried it around with her for most of the appointment. She squealed and hugged it and patted it (really hard, of course) and was very excited to play with it. We were even able to get her to climb over the deflated bean bag that she refused to touch and was really scared of last week in order to get to the stuffed dog. Since she responded so well to it, I decided to make her a weighted stuffed animal to play with at home. Here's how I did it:

**Note: See note at the end of the post for updated recommendations on what materials to use. In hindsight, poly pellets work better than rice & beans. :)

I started with the Eeyore that Raya's great-grandparents gave her last week when they visited. She likes to hug it so I thought it would be a good choice. I used rice and pinto beans but you could use small rocks too. Raya's OT told me not to make it more than 10% of her body weight.

I looked to find the seam that was left open for Eeyore's original stuffing process, which was on the back.

Once I located the seam, I carefully separated it and used a seam ripper to pick the thread out of the seam.

Once I had clipped the thread, I pulled it out to make an opening. I only opened it as far as the original opening had been stitched so that I didn't end up causing Eeyore to fall apart.

Then I pulled out the little ball of stuffing that was right in front of the hole and worked my fingers around on the inside of the body to make a path for the bags of rice & beans to go.

I had to divide the rice into small baggies so that when I stuffed them through the hole, they didn't pop open and make a mess.
I put the bags of rice in and pushed them up into the neck. I had to pull a little more stuffing out of the lower part of the body to make room for the bags of beans. Then I put the bags of beans in the the middle/bottom of the body and made sure that they were situated so that there weren't big lumps sticking out anywhere.

Once the bags were tucked away neatly, I put back all of the stuffing I had taken out. I made sure to put it in between the outside of the body and the bags of beans so that Eeyore is still soft when you hug him.

After everything was stuffed back in, I made sure that the body wasn't misshapen or lumpy.
In order to make sure that the stitching was secure, I threaded the needle with a double strand and then knotted it so that there were four strands to stitch it closed with.

Once everything is ready, stitch the opening shut by poking the needle through the under side of the fabric instead of from the outside. This will hide the stitching. When it's all stitched up, tie it off securely and clip the extra threads.
And VOILA: Eeyore now weighs approximately 1.75 lbs and is contributing to the family's long-term food storage.

Raya likes Heavy Eeyore :)
And there you have it. She never really shows much preference to specific toys. She'll play with something one time and then the next time you give it to her she'll completely ignore it. She seems to really like Eeyore now that he's heavy.

**Note: I used rice & beans because that's what I had lying around. However, after Eeyore got puked on a time or two, I realized that I didn't dare put him in the washer with baggies of rice & beans in him so I have since replaced them with little baggies of Poly-pellets like the ones I used in the weighted blanket tutorial I did. You can get them at craft/fabric stores and in the craft section at Walmart and they're pretty inexpensive.

Note to self

Note to self: Don't let Raya catch a cold. Post-nasal drip+super-duper gag reflex=BAAAAAAD combo.

Tuesday, January 25, 2011

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 this point in OT, it's more important for me to learn some of the theory behind what we're doing and learn to set realistic short-term goals so that I can measure our progress. I'm in that "new and exciting phase" still. :) Our OT has given me a lot of ideas on how we can adapt things we have at home or make little changes with the way we do things at home that will push Raya out of her comfort zone a little bit.
I've also started working on a little/big project that I think will be helpful for her and protect her from herself. Up until now, we haven't worried much about her pulling out her GJ tube. She really doesn't mess with it as long as she has a shirt on. When she first got the tube, they told me to make sure and keep a snap-crotch onesie on her so she wouldn't bother it but that made it hard to access her extension tubes. Anway, in the last few days, she's learned to take her pajama shirts off. When she wakes up, instead of throwing fits so we'll know she's awake and get her out of bed, she sits in her bed and plays with her shirt until she gets it off. Then she plays with her extension tubes. One day, she had even taken the tape off that holds the tube onto her skin and the tube was just dangling from the port. It's kind of scary when she does things like that, especially because she has a GJ and not a G tube. If the GJ comes out, it has to be put in by a radiologist at the hospital which would be a giant pain in the rear, not to mention risk of infection if it comes out, pain/discomfort/trauma of another procedure for her, etc. SO we need to do whatever we can to protect it.
We're also trying to prepare ourselves for when she's old enough to go to nursery at church, which will be in May. Even if she knows not to mess with her tube, other kids might be curious about it and pull on it or it could get caught on things when she's playing, etc.
What I've decided to do is make her some kind of strap or band to wear around her stomach that will protect the G tube from getting pulled on, played with, etc., and will also hold the extension tubes in place so that they don't have to be taped to her skin, which would also make it so that we could unhook the extension tubes when they're not being used. Or at least give us a place to tuck them in when they're not being used. It has to be stiff enough to hold everything in place but light enough to not be too hot when it's hot outside. I'm HOPING that I can figure out how to make her something like that. It will at least be a fun experiment. :)

Saturday, January 22, 2011

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. Obviously I don't know exactly what caused it but it could have been that her tube got caught or pulled on or something and just made the insde of her stoma bleed a little. Who knows. Hopefully we've seen the last of it, knock on wood.

Wednesday, January 19, 2011

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. :)

Tuesday, January 18, 2011


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 explaining a little more to me about what we're trying to do and how to go about it. She showed me some things that we can do at home. Then she had her play with a few different toys and crawl around. We tried to get her to crawl through a little collapsible play tunnel but she wasn't having it. :) She put toys in it and tried to get Raya to get them out, but Raya would reach in just far enough to get the toys out & that was it. The one time she got her whole body in, she totally freaked out and couldn't get out of there fast enough. We had Kaida crawl through the tunnel to try & lure Raya in but she just kept crawling around the tunnel to meet Kaida at the other end.
Then she tried to get Raya to crawl over a bean bag chair that didn't have very much stuffing in it. Raya HATED it. I'm trying to even think of how to describe her reaction because it was more than just a baby not liking something. She was very distressed by it. As strange as it may sound, it was one of those validating moments for me because obviously that's not a normal reaction. I know this one little example might not seem like a big deal, but it's just one example of a whole pattern of behaviors. Raya is a very smart little girl and she has demonstrated that by how well she has learned to compensate for and avoid things she's uncomfortable with.
Now that we're back to pushing her a little more in her therapies, some of those things that she avoids are becoming more apparent and it evokes 2 different reactions for me. One is a reaction of sadness and sympathy for her that her experiences of her environment are so skewed from a normal perception. The other reaction is that I'm SOOOO excited to move forward with therapies and so grateful for the people who have helped direct us to what she needs. She had feeding therapy today too and even though she was really tired and cranky, she was very receptive and cooperative with her FT. It is becoming more apparent to me that it's going to take time and probably a lot of time to get Raya to where she should be, but I'm feeling very optimistic about her ability to get there. We just have to be patient and go at her pace.


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.

Thursday, January 13, 2011

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 versa so it's a good team effort.

Tuesday, January 11, 2011

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 soon as it started going in, she totally stopped moving everything but her feet and just sat there. (not normal for her) After the first ounce went in she kept swallowing funny and looked like she was going to puke. I wondered if I was making a mistake but I finished the 2 ounces anyway. She just sat there completely still and looked like she was either going to vomit or fall asleep. She fell asleep. :) I didn't move her for 30 minutes and then I moved her onto a blanket on the floor. (a very thick one in case she threw up:) She slept for a few minutes and then woke up and started playing. SHE NEVER THREW UP! I was very excited. I waited another hour after her 2 hours that I gave her to let her stomach empty and then started her next continuous feed. I might even try another bolus feed while we're eating dinner tonight.
NOW. Of course I'm excited but still not holding my breath. After all, we are dealing with a little girl who has been vomiting multiple times a day for pretty much her whole life whether she was being fed in her stomach or not and I don't expect smooth sailing from here on out. That said, this is a HUGE step in the right direction because A. we can start teaching her body how to recognize feeling full and feeling hungry, and B. we can start feeding her real food through her tube (after we get the allergy testing done). I still feel like once we get her primarily on real food, she'll do better than she has on formula.

Thursday, January 6, 2011

A few of my favorite the allergist's office

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

Amazingly, Raya allowed the MA to take her vitals without working herself into a tizzy and vomiting this time. Then she sat in her stroller until she was bored/tired/fidgity.
Then she cried until I got her out.

The girls watched Toy Story 3 on the portable DVD player together. For 3.5 seconds. Then Kaida got mad at Raya for putting her hands all over Buzz so I had to move her away from Kaida.

Kaida was happy again. Raya wasn't. I stood up and held her but she wanted down. It was hot in there.

The temperature in the itty bitty exam room reached 80 degrees. I tried to turn it down. It didn't let me.

Once again, I found myself wanting to take the PATIENCE sign off the cabinet and break it. Slightly amusing but not appreciated.
After 1 hour, I gave up on trying to keep Raya happy and let her climb on the magazine shelf. 

Looked down & realized I had left the house wearing skinny jeans, white athletic socks and running shoes. I'm sure that breaks at least 50 of Stacy & Quentin's rules about what not to wear.
 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 reaction to it. Hopefully she won't and then we can start introducing those foods into her diet via feeding tube (for now, until she decides to actually eat them).

She also had her 4th visit with the home PT today and FINALLY let the poor woman do her job. She cried through most of the first 3 sessions but today she was in the mood to play and didn't really cry until the last 10 minutes when she'd had enough. Her PT & I were very pleased with a good solid 40 minutes of stretching & exercising.

Oh yeah, and here's something that's good for a laugh. Remember how I mentioned that Raya had horrible diaper rash from all the bile that goes through her now that wasn't before? Well, the GI doctor saw it the other day and told me it looked terrible (which I already knew) and wrote 2 different prescriptions for it. One was for nystatin (for yeasty rashes) and the other one was aquaphor+some kind of medicine. I was expecting 2 little tubes of ointment. I got one little tube of ointment and this beast:
In case you can't tell, it's huge. It's about 16 oz of ointment.

Wednesday, January 5, 2011

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 towards Raya getting over her hatred for doctors' offices/hospitals/medical facilities/medical personnel pretty much went down the drain during our hospital stay in Ohio. She's back to hating them all. I wish she could understand that they really are there to help her. Someday. :) As soon as I started taking her clothes off to measure her length & weigh her, she started crying & screaming. (BTW, she's up to 10.57kg/23lbs 5 oz which is HUGE compared to our other babies and we're very happy that she's got some meat on her bones) I can't say that I blame her for getting upset though, it was chilly and we laid her on a cold, hard plastic board to measure her and then sat her nekkid little bum on a scale in the cold drafty hallway. Luckily she calmed down after they left us alone in the room to wait for the doctor. She was happily playing on the bench next to me when the doctor suddenly knocked on the door & walked in & said hello. Raya was startled and climbed up me like a scared cat runs up a tree. It was kind of funny but kind of not.

Here's what we discussed:
  • Increased discomfort, especially at bedtime & when she's waking up puking & dry heaving
    • We're going to increase the 2 neurologic meds she's on but we have to do it slowly & do it one at a time
  • Lack of naps & difficulty getting her to bed at night
  • Big increase in reflux symptoms
    • We'll increase her Prilosec again since it's been a long time since we increased it & she's gotten really big since the last time (should help with comfort level in the early morning & help get her to be comfortable enough to go to sleep)
  • Possible need to change her GJ tube back to the slightly bigger size she had in before
    • I'll give it a few more days & see if I still think we need to change it or not (we'd all rather not have to do that yet)
    • There's granulation tissue around it again so that might be what's bothering her and not the actual size of the tube.
  • What did the Dr. in Ohio say?
    • He wants us to try Periactin or Zofran. Raya's Dr. says no to the Periactin because it's an antihistimine and the American Academy of Pediatrics says not to give antihistimines to children under the age of 2 because of the risk of cardiac complications. Zofran (anti-nausea med usually given to chemo patients) is a possibility but we may have a difficult time getting insurance to approve it because it's typically only given to chemo patients & sometimes to pregnant women.
    • Pretty much everything else in the letter was stuff he had discussed with me before we left.
  • What's our game plan?
    • The goal is to make her comfortable enough to sleep all night long & not wake up vomiting & dry heaving. I would LOVE that. So the plan is:
      • First, adjust her medications to a point where she's comfortable & her symptoms are minimal.
      • Then after that, we can start trying to do bolus feeds into her stomach a little bit.
  • I asked about the possibility of introducing real food that has been liquified in the blender. I would LOVE to see how her body handles real food compared to her formula.
    • She surprised me with how on-board she seemed to be about having us visit with a lady in Tucson who is very well-known for helping food aversive kids eat and helping parents with introducing a blenderized diet for tube-fed kids. She even said that in Raya's case, she would be okay with Raya losing a little bit of weight in the process. Normally, she doesn't agree with that philosophy when it's a low-weight child but we've done a great job putting some cushion weight on Raya.
    • BUT (there's a but) we need to make all the other adjustments we talked about first and be patient. Raya's body has always had a difficult time coping with changes so we have to take things slow with her. Besides that, one of her neurologic meds can only be adjusted by a certain amount every 2 weeks so hopefully we won't need to adjust it too much.
  • DIAPER RASH of all diaper rashes! The poor girl. The term "diaper rash" doesn't even begin to describe it. On days when her body drains more bile out of the G tube, she's ok but now that most of it is going through her instead, the second she poops, there are blisters forming. We've used Aquaphor, which used to work on her, and Ammens powder, which also used to work on her and on our other kids, but neither one of them has made it go completely away. She wrote us 2 prescriptions (one for Aquaphor+something and the other for Nystatin because she said it looked a little yeasty) for the diaper rash and also told me to use something called Balneol to cleanse her diaper area with instead of wipes. I'm still trying to find the Balneol though.
Well, I think that's pretty much it. This morning I took her to the initial eval for OT, which I'm VERY much looking forward to moving ahead with. I was worried about how she'd respond to her OT but she seemed to really like her (WHEW!) and crawled all over the room playing the whole time. Hopefully soon she'll feel the same way about her PT that comes to our house because so far she cries for at least half the session every time. I filled out a sensory profile about all Raya's fun little quirks, and then I sat down at the computer tonight and emailed the OT another long list of all the things I forgot to mention when I was there today. Like how she frequently throws up during and/or immediately following car rides. I noticed today when I yanked her out of the carseat in the garage so she'd throw up on the floor and not in the car that there's actually a large stain (with many other smaller stains on top of it) from all the times I've yanked her out of the carseat so she could throw up on the floor instead of in the car. :) But I digress. Anyway, I'm hoping that DDD will approve Raya for OT very quickly (pipe dream, I know) because I need guidance. :)
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