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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.**

Saturday, April 30, 2011

Have I mentioned how much I hate bile leakage?

Because I really REALLY hate bile leakage. I'll spare you the pictures this time but I went to put Raya's jammies on tonight and lifted up her shirt to find the gauze around her GJ tube completely yellow (dry though) and blisters under & around the tube. I cleaned her skin really well and slathered on a layer of her aquaphor+questran that the GI doctor gave her for bile problems such as this. :)
There's been a lot more leakage lately from her tube and I haven't figured out where it's coming from but I think the J port on her tube might be leaking around the connection. Or it might be leaking from around the tube. I'm also wondering if the balloon that's on the inside of her stomach holding the tube in place has a leak in it because I replaced the water in it a week or 2 ago and tonight when I checked it, there was 1/2ml less than what I put in. That might not sound like very much but when there are only 5ml holding the balloon in and it deflates by 1/2ml, it makes a big difference in how tightly the tube fits. At least now I know to keep a closer eye on it. I keep wondering when something's going to hit the fan. Probably because things have been so incredibly stable & dare I say easy with Raya for a couple of months now and I'm not used to that. I'm not being cynical or anything but when you go for such a long time where you're putting out new fires every day and then suddenly you realize it's been a month or two since anything big has come up, you just wonder what's next & when. I'm trying to not think like that though and just enjoy how comfortable life with Raya has gotten. She's still got a busier schedule than all 3 of the other kids combined but we're used to it now. :)
On a more positive note, we have increased the amount of formula that's going into Raya's stomach. Now she is fed 650ml overnight in the J tube, 125ml during the day in the J tube, and 125ml formula+125ml water in the G tube. We do boluses of about 75ml into the G tube every half hour or so until it's gone. We were only giving her 50ml formula and 190ml water, so the half & half mixture is a big step forward towards giving her straight formula into her stomach. So far there hasn't been any vomiting with the bolus feeds since we've increased the ratio, so we'll keep advancing her towards straight formula.
And now for a funny picture. One of Ray-ray's favorite things to do is sit on her "big" sister Kaida. I laugh every time I look at this picture though because Raya makes Kaida look so small!

Tuesday, April 26, 2011

Mark this day on the calendar

It took Raya almost 18 months but she FINALLY made it through an entire doctor's appointment with NO vomiting and not even any crying!! In all of her many, many doctor's appointments, that has NEVER happened. In fact, not only did she make it through the whole appointment without crying or vomiting, she was even cute & charming for most of it. :) She was on a feed while we were there so she had her little backpack on and walked right into the exam room like she owned the place. After she got weighed (23lbs 15oz) I put her diaper, shoes and backpack back on her and let her wander around the little room while we waited for the doctor. She played while I went over everything with the doctor and then she sat on my lap and let her listen to her lungs, gut and heart (which still has a little murmur) with the stethoscope. She was a very good girl. Then she sat on the exam table (that's usually where it all goes to crap if it hasn't already) and she cautiously let the doctor look in her ears. She behaved so well I could hardly believe it was Raya. If she ate food I totally would have bought her a treat on the way home. :)
We had quite a list of things to go over today but I guess that's typical. We started with the usual: meds list, feeding schedule, how are her symptoms, etc. After that, she said, "Okay, what questions do you have for me?" so I pulled out my little notebook and flipped to the page where I had written down the questions. She laughed and said, "How many volumes do you have now?" :) I told her we're very near the end of Raya Vol. 3. She said someday I'll be able to burn them but I told her I'm keeping them as proof of everything I did for this child so that she'll never be able to be rebellious or naughty because of the guilt. :)
I had previously (and very briefly) mentioned Cyclic Vomiting Syndrome. CVS is a little-known but really awful medical condition which is exactly what it sounds like. People who have CVS go through these awful episodes of unrelenting nausea and vomiting that can last for days, during which they're pretty much bedridden, they can't keep anything down, they're terribly thirsty but don't want to eat and vomit everything they drink, and often end up in the ER getting IV fluids for dehydration. The vomiting cycles can last for a day or several days, and then when it ends they return to normal life until the next cycle hits them. When I had first started researching it, there were a lot of similarities between CVS and Raya's symptoms. The deeper I dug though, the greater the distinction became between the similarities and the differences. In order to be diagnosed with CVS, there has to be a phase in between the vomiting cycles where the patient doesn't have nausea or vomiting. Um, yeah, Raya didn't have that. With her, it was vomit at least once a day and sometimes 8 times a day or anything in between. So bottom line is, after researching it further and discussing it with Dr. S today, we've decided she doesn't have CVS. The funny thing is that Raya is on several of the medications that are used to treat CVS with the exception of the sedatives that are used to aid in stopping an active vomiting cycle. Hooray for ruling out yet another possible diagnosis. :)
Speaking of vomiting, one of the other things I needed doctorly advice about today was this. Now that Raya is FINALLY under control with all of the things that were so wildly out of control before, which it took us 15 very long months to GET under control, I'm feeling very torn between wanting to push her to transition back to gastric feeds so we can get her off of the GJ tube and back to a G tube and wanting to just leave well enough alone and not rock the boat. We worked SO hard for SUCH a long time to get to where we are, and part of me is afraid that if we push too hard too soon to go back to gastric feeds, we'll undo everything that we've done, meaning what if we push her to get back to gastric feeds and her vomiting gets out of control again. Then on the other hand, since we have finally made huge steps forward in getting her symptoms managed, we are finally in a good position to make the transition back to gastric feeds. Dr. S said that we definitely need to push to get her back on gastric feeds because getting rid of the GJ tube would make our lives much easier. I'm not disagreeing with her but the skeptic in me thinks back to life before the GJ tube and wonders if it's possible to feed Raya 100% into her stomach without the vomiting coming back. I guess the key is to move SLLLOOOOWWWWWWLLLLY with her. SO that is the plan. We're going to slowly increase the amount of formula that goes into her stomach and see how she handles it. Should be fun. (Note to self, buy a tarp to put under her crib just in case.)
Due to her sudden interest in water, we're going to be redoing her swallow study sometime in the near future. The kid likes the way water feels in her mouth but chokes on it every time she gets any down her throat so we may have to start thickening the water that we give her to play with. That's expensive play water but whatever works, right?
The other thing we talked about was whether or not it's worth it for me to take her back to the allergist. When I took her before for food allergy testing, even the positive control was negative and it's most likely because of one of her medications (an anti-depressant used to prevent retching) which can apparently suppress histamine reactions. Anyway, the allergist had said that if her GI doctor was okay with taking her off of that med to redo the testing, we could do that but when I asked about it today she said she doesn't want to do that. It's fine with me, I don't want to disrupt the good thing we've got going here either, but it makes me wonder if it's just going to be a waste of time & money to go back. I might still take her though because she's had eczema on her legs ever since we switched her to her new formula, which is hypoallergenic but not as hypoallergenic as the old formula. Ugh, decisions.
Well, that just about sums it up. Onward and upward. :)

Monday, April 25, 2011

Cramming for a GI appointment

Do any of you other moms feel like you're cramming for a huge exam before you take your kid to a doctor's appointment? That's what I feel like right now. :) Raya has a GI appointment this afternoon and I've spent my morning making lists and compiling information. There's the list of all her medications, the list of things she's asked me about, the list of things I need to ask her about, the things the feeding therapist needs to know, the things the allergist needs to know, the research I've been doing about cyclic vomiting syndrome (which I'm now doubting that she has but who knows), and the list goes on and on. I realized very early on in our relationship with the GI doctor that in order to get the most benefit out of our whirlwind visits, I have to prepare ahead of time so I don't feel like a deer in the headlights when she asks me questions. It's giving me college flashbacks. :) One thing is for sure though. After making these lists of every symptom Raya has and all of the medications we use to control or alleviate them (7, by the way) I am being reminded once again not to take my pretty much normally functioning GI tract for granted. Anyone who has a child with a complex medical issue, or anyone who has one themselves, would agree.
In other news, look how cute my babies are :)
I'll report back about the GI visit later. :)

Wednesday, April 20, 2011

THIS is what sensory processing disorder looks like

As great as Raya's PT session went last week, that's how bad it went today. She was NOT interested at all. It was really strange the way her temperament changed like a light switch was flipped. Right before her PT got to our house, I flushed her J tube with about 10-15ml of water just like I do a few times a day. I don't know if that's what did it or if she would have been like that anyway, but she just immediately wanted NOBODY to touch her. She's been doing really well the last month with being somewhat cuddled when she's being held, but as soon as I flushed her tube this time she wanted up and then she didn't want me to touch her just like she used to do. I'll be holding her and she's leaning away from me and if I try to give her a kiss or hug her, she arches her back and pushes me away.
Anyway, once that behavior started, I knew PT probably wouldn't be too pretty today. She wanted NOTHING to do with her PT and it was funny to see the lengths she was going to in order to avoid touching her. Especially when Raya was sitting on her lap while the PT put shoes on her. She somehow managed to get off of her lap and stand up without her hands touching her PT. :) Since she wasn't cooperating very well we thought she might like to go outside and walk down to the park. Ha ha. She cried when I said, "Let's go bye-bye Raya!" Usually when I say that she gets excited and walks to the door or wants me to pick her up but she just stood there and cried. I picked her up and took her outside and then her PT took her and did some neck exercises for a few seconds. We put her down and started walking down the sidewalk and this is what happened:

And that, my friends, is sensory processing disorder. She's fine when she's on the flat sidewalk, but once she gets to the driveway part that slopes to the side and one foot is higher than the other, her brain just can't process what's happening to her body. She tried to avoid the activity that was uncomfortable for her by walking on the rocks next to the sidewalk. When her toe accidentally crossed over the line to the steeper slope of the sidewalk, she acted like she had stepped on hot coals. Once she realized she was going to HAVE to cross the sloped part, she just shut down and stopped altogether. Other times that we've walked across this same driveway, she's gotten to her limit about halfway across and just sat down and cried.
This is just one example of how SPD affects Raya. There are SO many other things like this. Luckily most of the things that bother her don't upset her as much as walking on the sloped sidewalk or else if they do, they are things that she is able to easily avoid. It's scary as the parent to watch as your child has an extreme reaction to something that other kids don't even blink an eye at. It's hard not to wonder how they will be able to live a "normal" life when they can't handle something so simple as walking down the sidewalk. The thing that keeps me from worrying about it is that I have seen her learn to be okay with things that she's reacted to like that before. She used to absolutely freak out and panic when we tried to sit her on a big exercise ball. Even if we sat on it with her in our laps she hated it. Slowly over time, she got to the point where now she likes it. I'm sure that the day will come when she is able to walk down the sidewalk without even thinking about it. By then, there will probably be something else that freaks her out. It's all a process of learning and growing and being very, very patient.

Tuesday, April 19, 2011

We've come a LOOOOONG way

Today while the girls and I were at Raya's OT appointment, I was flipping back through the little notebook that I write down all of Raya's feeds, meds, vomits, etc. (it's actually Raya Vol. III) I flipped to the first page in Vol. III, which was from October 24, 2010. Even though I know what's in the book and what was going on in the pages I was reading today, it just took me back to what life was like 6 months ago. I relived all of the highs & lows of the hospital roller coaster that we were on for the last half of October. I was happy, sad, relieved, angry, frustrated, claustrophobic, imprisoned, bored, lonely, and felt like I was somewhat on vacation but staying at a really bad hotel. I loved the alone time with Raya but missed the rest of the family.
Aside from remembering what it feels like to wonder if you're ever going home from the hospital, I was also reminded how high maintenance Raya was at that point in time. Her GI tract was SO out of whack and we had a lot of doctors collaborating on what to do to get things functioning properly for her.
While she was in the hospital and shortly after she got out, there was 200ml of gastric fluids draining out of her stomach every day. That's a little less than 7 oz. We were infusing some of it back into her J tube while battling the blistering diaper rash that the caustic bile was giving her. She was trying to get over the C. diff infection that she got in the hospital. (and yes, I am still 100% convinced that she picked it up while we were at the hospital) She was on 6 medications a day, which equalled about 12 doses a day. Since we were draining so much fluid out of her, we were having to add Pedialyte to her formula in addition to the water it was mixed with so she wouldn't get dehydrated. If we didn't drain her stomach 24 hours a day, she would vomit large amounts of bile, which was really disgusting and made us feel really bad for her. Life was C*R*A*Z*Y.
Fast forward to now, she is SO much better off than she was then. Her G tube output has gone down so much that we don't even measure it anymore unless it's really high. She's only hooked to her feeding pump for about 12 hours a day now instead of 20+, which has been SO great for her (and for us!). We still don't put any meds except her probiotic and the occasional Maalox into her stomach, but we put 8 oz of water+formula into her stomach 45ml at a time during the day. We got her off of the elemental formula she was on (Neocate) and put her on a peptide-based formula (Peptamen Jr.) and even though the transition took almost a month, she is doing well with the new formula. She still struggles from time to time, but overall I feel like her symptoms are being managed now as opposed to 6 months ago when we were frantically trying to get things under control. For some reason, this past week I've been feeling the frustration of not having a real, solid diagnosis for what's causing her GI problems. Having a child with undiagnosed and difficult to manage health problems is like having an itch on your nose while you're wearing a mask. You just feel this overwhelming need to scratch that itch but no matter what you do, you can't quite get to it.
Anyway, today, reading through the last 6 months' worth of my little book o' Raya helped me to see how far we've come and helped me to feel a little bit more at peace with not having the answers that we would like to have.

Saturday, April 16, 2011

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, jumping, crashing into things, etc. decreases. In other words, it helps the child to calm down, relax, and become less defensive about things that bother him/her.

After looking at several online tutorials and websites that sell them, here is how I made Raya a weighted blanket:

I started with a piece of flannel and a piece of cotton of the same size. I laid them right sides together on the floor, smoothed out the wrinkles (because I was too lazy to iron it) and trimmed any excess that didn't quite match up.

Once I was sure that the fabric was aligned, I pinned all the way around the edges so that it wouldn't move when I picked it up.

Next, I stitched around 3 of the sides (both long sides and one short side) so that it was open all the way across one end. I left about a 1/2" seam allowance so that I'd have room to top stitch it twice. 
PS No judging. I'm not a seamstress and I get too impatient to aim for perfection. :)

Then I clipped the corners to keep them from being bulky when I turned it right side out:
Yes, I have freckles on my fingers.

Once the corners were clipped, I turned the blanket right side out, making sure to pull/push the seams out as much as possible. I do this by pinching right on the seam like this: (pardon the blurry picture)

Then I pull and lay it flat like this:

And iron the seams like this:

After I had ironed all 3 of the side seams, I top stitched around all 3 sides. (I left about 1 inch of seam length open on the end of the blanket that was open so that when I was ready to finish the last side, I wouldn't have to pick out seams.)

The most difficult part of this project is just figuring out how many squares your blanket is going to have, how big they need to be and how much of the filler each square needs to have in it. Raya's blanket ended up being 8 squares wide, 6 squares long, and the finished weight is about 3 lbs. (*Note: According to this article, the guideline for deciding on the weight of the blanket is 5% of the body weight. Other sources I read said 10% of the body weight+1 lb. All of the articles I read said that you should always check with your child's OT/doctor before using a weighted blanket.)
After I did my math, I sewed vertical columns in the blanket:
Since there were no lines to follow on this fabric, I folded the side of it over to give me a
somewhat straight line as a guide. There were a lot of crooked lines on Raya's blanket. :)

After you've worked all the way across the blanket & have all the vertical columns done, the real fun begins. :) Here's what I used to fill Raya's blanket:
I got them at Walmart in the fabric section next to the quilt batting. They were about $5 a bag.

Here's what they look like:
If you spill them, you'll be SORRY!!!! They're slightly bigger than rock salt and very hard to see
when they're on the counter or floor. So be careful. Just sayin'. :)

I used 2 tablespoons and 2 teaspoons for each square. You can either pour them in like this:

Or like this:

Even though scrunching the fabric up around the funnel was kind of a pain, it made it much easier to get the little pellets where I wanted them without any of them sticking to the flannel on the way down.
Once you've put enough for the first row of squares in each column, you can stitch across the columns to seal the pellets in. (BE CAREFUL to push all the little pellets out of the way and not run over them or you might break your needle and/or sewing machine.)

Keep moving across the blanket by adding the right amount of pellets in each column and then sewing across all of the columns. It will start to look like this:

It gets a little more cumbersome as you go along because there is so much more weight with each row. When you get to the very last row, it's a good idea to use pins so you don't end up with a mess. You'll want to fold both layers of the fabric to the inside of the blanket and pin all the way across so that the beads don't fall out and so that the fabric stays in place as you stitch the blanket closed.

I stitched close to the edge on this end and continued to stitch all the way around the blanket. Then I came back to the end that had been open and stitched across it again only that time I left a larger margin to match the other 3 sides. I hope that makes sense.

And here's what it looked like when it was all done:
Not the prettiest thing I've ever made by any means (read: there are a lot of crooked lines) but it turned out great for just winging it. :) So far, Raya has absolutely NO interest in it. Go figure, right? :) I think she just needs to feel it out a little more though and figure out what to do with it. She does seem to like laying on top of it like a pillow, so I guess that's something.
Oh, and a side note, she hasn't puked on it yet so I haven't tried washing it yet but the pellets are supposed to be machine washable. My plan is to wash it in the washer on the delicate cycle and then hang it to dry so that it doesn't get caught on anything & tear open. That would be a mess.

So that's how I made a weighted blanket. :)

Friday, April 15, 2011

I {heart} Raya's GI doctor

Before Raya started seeing her GI doctor, I had never EVER had a phone conversation with a doctor. No doctor had ever called me after hours to check on my child(ren) about anything. I didn't know doctors even DID that anymore.
We started seeing Dr. S in January 2010 when I took her in after her 2 month well check because I didn't think her reflux meds were working for her. A few days later, I had taken her in for a weight check and when I didn't hear anything from the doctor before 5:00 I assumed that things must not have been too serious or she would have had someone contact me. Then at about 8:30 or 9:00 my phone rang and it was Dr. S telling me to bring Raya to the hospital. That was the first time she called me.
In the weeks following Raya's first hospitalization, she called me anytime there was something she was concerned about (like after a not great weight check, etc.) and in the weeks that we didn't have a visit or weight check, she'd call me to see how Raya was doing. I was always really touched to know that a doctor cared enough to call after hours on her own time to see how things were going.
Last May she called me one evening to see how Raya was doing with some changes we had made and she asked me one of the questions that she asked every time we saw or talked to her: Are you still doing okay with the NG tube? At first I interpreted that to mean, did I think we still needed the NG tube, and I made sure to adamantly insist that we still needed it. Then she finally got what I was thinking and reassured me that she wasn't trying to take away the feeding tube, she just wanted to know if we were ready to move on to the G tube instead. When she called me that evening in May, we talked for a good 20 minutes, which is forEVER in doctor years. :) I had made a list of questions & concerns that I had about getting the G tube and the fundoplication surgery that we were considering at the time, and I was able to discuss all of that with her. She listened to my concerns and gave me her opinion and most importantly, she supported my decisions. She acknowledged that the G tube was a big decision and that if I didn't feel like we were ready for it or needed it, she supported that.
There are just so many things that I appreciate about her. Whenever Raya has been in the hospital, she has come by to see her even though she doesn't usually do rounds on the floor. She talks to me like I'm an intelligent human being and always asks me how I'm handling things. She has sought out the advice and intervention of people outside of the state who are considered to be experts in their fields on Raya's behalf. She asks my opinion on a lot of things rather than just telling me what we're going to do next and makes me feel like she values my opinion and my role as Raya's mother. The way she treats me makes it very easy for me to trust her with my daughter's care.
It was kind of ironic that she called me this evening. I had emailed her nurse earlier in the week to ask about the possibility of bumping up a couple of Raya's meds to help with the recent increase in reflux symptoms but hadn't heard back yet. I assumed that either the answer was no or else they were really busy this week & just hadn't had time to get back to me. I've been wanting to talk to her about a few things but was planning on waiting until our next appointment. I was walking through the garden section at Walmart and my phone rang with an unknown number. I almost didn't answer it but thank goodness I did because it was Dr. S.
We talked about the medications and she explained to me why we couldn't increase them and why increasing them wouldn't help anyway, and she gave me suggestions for how to help Raya be more comfortable. Then I was able to bring up something that I've been researching as a possible diagnosis for some of Raya's symptoms. I was a little nervous about asking her about it because I didn't know how she'd react to me bringing it up, but now I'm glad I did. She said it was absolutely a possibility but that we'll need to reevaluate some things and "ponder it" a little more. I told her I don't know why but I just have this need to put a name on Raya's problems. She kind of laughed and said that she's not even Raya's mother, she's just her doctor and even SHE feels like she needs to find a name for it other than just Raya Syndrome. :)
I don't know why I felt like that needed its own blog post but I guess when you get a doctor that goes above and beyond and shows that they really do care about your child, it helps you to have hope that eventually the answers you're BOTH looking for will be found. Having had the wonderful experience we've had with Dr. S, I have also realized that there is nothing wrong with looking around to find a doctor that is the right fit for you, especially if it's a doctor you will be seeing for a long time. There ARE really amazing doctors out there.

Wednesday, April 13, 2011

Reflux, PT and a bowlegged baby

Despite the increase in her reflux symptoms this week that have made her an uncomfortable girl, Raya had a GREAT session with her PT this morning. Possibly the best one she's had yet. She was 95% cooperative and since she was doing so well and being such a willing participant, we didn't make her do anything she doesn't like to do, like walk down the sidewalk that makes her freak out. She played with the ball popper & while she was doing that, she let her PT make her stand on one leg while she massaged the other one, stretch & massage her neck, and whatever else she needed to do with her. The real shocker was that when we opened the baby gate to let Raya practice going up & down the stairs, she wasn't interested. Her PT carried her up to the landing and she started kicking & screaming so she sat her down on the top stair and Raya did a pretty good job scooting down.
I was pretty shocked at how well she did and so was her PT. She was happy & cooperative the whole time. She's had such a rough week with her reflux and has even thrown up a couple times this week, so I was expecting crabbiness from her today. She hasn't been sleeping well and hasn't taken more than a 45 minute nap the whole week. When she does go to sleep for a nap, she wakes up 20 or 30 minutes later screaming from reflux and then she won't go back to sleep. It makes for long days, let me tell you. She's also been waking up late at night the same way. There has been a little trade-off though. She's been so much less resistant to being held and, dare I say, cuddled. The girl who was never welcome in our bed because of her mad vomiting skillz, and then never WANTED to be in our bed spent an hour on Monday morning like this:

I feel like her belly is always hanging out but sometimes when she actually gets comfortable & goes to sleep, I don't DARE move her shirt or touch her! :) I was kind of laughing about the fact that she's 17 months old and I can count on one hand or less the number of times she's slept in our bed.

I've had some growing concern lately about her increasing bowleggedness. I first noticed it about a month ago and it has gotten progressively worse since then. I brought it up with her PT a few weeks ago and at first we thought that maybe it was just part of her wide stance that babies have when they're learning to walk. Then it got to where she had pulled her feet in closer together but her knees had stayed wider apart and she looked really bowlegged. It seems to be coming from her feet. When she walks, it looks like her big toe flexes really hard like her feet are trying to grip the ground, so she looks really bowlegged when she walks. Sometimes when I see her walk it makes me cringe a little. Which brings me to a side note, does anybody else ever look at their child and wonder if other kids are going to be mean to her about the things that are different about her? I think that's why I cringe when I see her walk like that or cock her head to the side. My mind starts wandering and I wonder how old she'll be when her peers start to notice that there's things about her that are "different" and pick on her, which is silly because I feel like most of her issues will be resolved before she ever gets to that point, but I still think about it.
AAAAANyway, so today we took a little video clip of Raya walking so that her PT can analyze it a little more and show it to some of her colleagues to get some ideas on what to do with her. The video was taken after her PT had massaged her feet and stretched her a little so she's walking a LOT better in it than she normally does. And she walks really fast. :) Here it is:

So there you have it. PS my favorite part of the video is how she uses her tongue to help hold on to the ball I handed her. :)

In other news, Raya's 6th tooth finally popped through. (and no, that's not the reason she's been waking up. It really is the reflux that's the problem.:) Also, I bought some materials to make Raya some more sensory stuff. Technical term. :) I'm planning on making her a weighted blanket and possibly more weighted stuffed animals of different sizes & weights. We don't have any appointments tomorrow so I plan on getting started with it tomorrow. And hopefully my little girls will cooperate. Should be fun. :)

Monday, April 11, 2011

One year ago today...

One whole year. That's how long it's been since Raya did this:
It's pretty crazy to think about someone not eating or drinking ANYTHING for a whole year. (with the exception of a few small amounts of baby food and barium that have been forced on her a few times) There have been times when the fact that she refuses to eat has really gotten to me. It's hard to explain how it feels to know that your child is incapable of doing one of the things that is most essential to sustaining her own life and has absolutely no desire to. I get asked frequently if we know how long she'll have to have the feeding tube. The answer to that question is a big fat no. We have NO idea when she'll be able to get rid of it. It's completely up to her. When she can eat enough calories, drink enough fluids, and take all her medications by mouth, THEN we can get rid of the feeding tube. How long that will take is anybody's guess.
Having said all that, there are perks to not having to feed her like a regular kid. Maybe I shouldn't admit that I feel that way but it's true. :) I don't have to worry about her getting food stains on her clothes. If she was an eater, she'd be at the age where she wants to be independent and feed herself but isn't quite coordinated enough and I don't have to clean up after that. I don't have to hose her down to clean off layers of food before I can take her out in public. I don't have to think about what I'm going to feed her for breakfast, lunch or dinner. I don't have to take up room in my diaper bag packing snacks (although sometimes I wouldn't mind having snacks in there). I've probably saved a lot of money on baby food, which probably offset a small portion of her medical expenses for last year. :) And last but not least, I've learned that no matter how much I want to control my own life, there will be parts of it that are completely out of my power to control, and that those are the parts of my life that God is in control of.
I was thinking about when I wrote this post about how frustrating it was to try and feed her baby food when she didn't have any intentions of eating it, and how inadequate it made me feel as her caretaker that I couldn't make her eat. That was about 8 months ago, and I guess I've grown since then because I don't feel bad about it anymore. I have little moments that get to me when I'm caught off-guard with something, but Raya not eating doesn't bother me anymore. I'm at peace with it and no longer feel the need to control it because I know that when she's ready, she'll eat.
I've also been thinking about how we got from a baby who would drink most of her bottles to a 17 month old who eats/drinks nothing. I don't know if people realize this but it was by choice that we stopped feeding her by mouth. Last April, we (me, Donny and Raya's doctor) made a decision to stop oral feeds. We had a couple of reasons for doing it. One was that we were concerned that she was aspirating while she drank bottles (getting formula in her airway) and we didn't want to put her at greater risk of getting aspiration pneumonia. The second reason was because none of the things we had done with her feeding schedule up to that point had reduced the vomiting, so her doctor wanted to try doing a long continuous feed with the pump hoping that it would be more gentle on her stomach. At that point, she was drinking a good percentage of her feeds but the amount she was drinking each time was going down and the number of feeds that she refused completely was going up.
Even though I do sometimes wonder if or how things would be different if we had kept her on oral feeds, I have no regrets about pulling her off of them. Because I have sought out God's guidance in the decisions we've made about Raya's treatment, I have never needed to second guess the things we've done with her. We have made the decisions we felt God wanted us to make and I'm grateful for the peace that knowledge brings.
And just because she can't eat doesn't mean she can't feed herself. I had turned off her feeding pump and unplugged her a couple days ago and then a little while later, she walked into the kitchen like this:
It's hard to tell in the picture but the little smarty pants had plugged her feeding pump into the G tube extension tube and was dragging the backpack around behind her. :)

Sunday, April 10, 2011


My girl is 17 months old today, so just for fun, here are 17 things about Raya at 17 months. (besides the obvious one, being that she'll be old enough to go to nursery at church in 1 month. Yay! :)
1. She has a lot of nicknames, as do all of the kids. The most common ones are Ray-ray and Pete/Petey.
2. Even though they're not very clear or intelligible, she does have a few words. She can say Raya, Bubba (Cole's nickname), Kaida, Daddy, backpack (her first real word), go, whip (because we pat her on the bum and say "whip, whip, whip"), Mommy (but it sounds like grandma), and no but she doesn't know what that means yet.
3. She LOVES music and loves to dance, which of course is fun to watch. :)
4. Her favorite activity when she's supposed to be sleeping but isn't is to pull everything out of her backpack, tear off little pieces of lining, and stuff them into her G tube extension tube.
5. She also loves to find things she can plug into her G tube extension tube. Mostly syringes and the feeding pump after it's been turned off & unplugged but tonight she got a plastic toddler fork in there too.
6. She's quickly learning that if she really wants to, she get the big kids to do pretty much whatever she wants them to.
7. She says "mmmmm!" a lot which is funny considering that she doesn't like the taste of ANYTHING.
8. She still only has 4 teeth all the way in and 1 more that's still just barely through.
9. She knows the sounds that a dog, cat and cow make, although according to her cows say "Boo!"
10. She resents the fact that she never gets to go upstairs unless her PT is trying to get her to practice coming down the stairs.
11. Her most recent sensory-induced panic was because she was walking down the sidewalk and then started walking across the slope of a driveway so that one foot was higher than the other.
12. She has an uncanny ability to discern crumbs from rocks or other non-food objects, and will only put the non-food items in her mouth.
13. She has recently developed a fascination with taking things from the kitchen or pantry and putting them in the bathtub in the master bathroom. Today it was 3 cheerios and a box of oatmeal.
14. She likes to take my hairbrush and walk around the house "brushing" her hair (what little she has), which equates to whacking herself on the head with the brush. It makes her feel grown-up though.
15. She LOVES cold and does not love hot. Especially water that's really warm.
16. Since starting weekly OT and PT, she has started to lower her defenses and give us a few more moments of snuggle time.
17. She is perfectly content with her little life just the way it is right now. Including the part where she doesn't have any desire to eat. And you know what? So am I. :)
Watching Kaida eat a treat
Sort of snuggling :)
Relaxing on the couch
She won't let us put a blanket on her but she'll cuddle the blanket and her puppy :)

Saturday, April 9, 2011

End of a streak and a balancing act

Last night I thought to myself, Hmmm...Raya hasn't thrown up for a long time! I didn't even say it out loud, all I did was THINK it. Then we were awakened at 5:30 to the sounds of her throwing up. And throwing up, and throwing up. She threw up off & on for about an hour. I'd have to look back in my little log book and see for sure but I think this 2 week no vomiting streak is the longest time she's ever gone without throwing up. It was nice while it lasted. She's been on a little bit of a downhill slope lately and I'm thinking maybe it's time to adjust her meds again. She sees her GI in a couple weeks so now I'm trying to decide if I should call and ask them to adjust them now or try to hold out until we go back in. She's waking up screaming, not napping for more than half an hour or so, the sudden increased oral aversion, and then there's the other typical reflux symptoms like the loud swallows that sound kind of like hiccups, the coughing, the raspy breathing, etc. So yeah, probably going to need to change something soon. Reflux is such a balancing act!

Wednesday, April 6, 2011

How & what we feed Raya

I've gotten a lot of questions recently about how Raya gets fed and what she gets fed, so here it is. :)
First, the "what". About a month ago, we finished a 2 week long transition from Neocate Jr. to Peptamen Jr. Both are nutritionally complete formulas for kids with digestive problems. According to Neocate's website, "Neocate Junior is a nutritionally complete, powdered amino acid-based medical food for children ages 1-10 with cow milk allergy and other food allergy associated conditions involving gastrointestinal tract impairment.
Neocate Junior has been formulated with extra vitamins and minerals, especially for those patients with malabsorptive conditions resulting from gastrointestinal tract impairment."
We recently switched her to Peptamen Jr. because it's a peptide-based formula (which means it's a little less broken down than amino acid-based Neocate) and we wanted to see if that would help with her chronic (and very caustic/acidic) diarrhea/diaper rash problem, which it did. Here's what Peptamen Jr's website says:

"For the Nutritional Support of GI-Impaired Children Ages 1-10, Complete tube feeding or oral supplement, Balanced peptide profile to support nitrogen absorption and growth" blah, blah, blah.
Currently, Raya gets 900ml/day of formula. She gets 625ml overnight, 245 during the day, and another 30ml mixed with 7 oz of water that we put through her G tube. All of the formula goes through her J tube.

Here's how she gets fed. We'll call it Feeding Pump 101. :)
Here's her backpack with her Zevex Enteralite Infinity pump:

Yes, if the front pocket gets zipped all the way, it almost always gets kinked and then the formula doesn't flow like it's supposed to and/or the pump beeps frequently, which is annoying.

**UPDATE: When the bag design changed and we got a new backpack, we were able to start pulling the loop of tubing into the backpack and zipping the front pocket all the way so we don't do it like this anymore.

To access the buttons on the pump, we unzip the little pocket on the front. Then we try to push the buttons while holding the elastic band out of the way and trying not to accidentally push the button that clears the dose and rate on the pump or drop anything. :)

Inside the backpack is the bag we fill up with formula and usually 1-2 ice packs to keep it from spoiling, especially overnight.

To get a feed ready, we hook the tubing into the pump, pull the red plug through the button hole, and strap the pump bag into the backpack.
For Raya's overnight feeds, we have 2 options. We can either set the backpack in the corner of her crib and hope that she doesn't wake up and decide to tear everything apart (which happens frequently, especially during naptime) or we can hang it on the IV pole. The only problem with hanging it on the IV pole is that if she gets too far away from it, there's no slack in the tubing and it's a little more scary since she rolls around a lot and could get it wrapped around her neck. The solution to that problem is this:
This is a 4 foot long extension tube. Adding this makes it take forEEEEEEEVERRRRRR to prime the tubing (you have to get all the air out so you don't pump the kid's belly full of air) but it's SO nice to have extra length so that she doesn't get tangled up and pull the GJ tube out of her stomach.
Here's how things look for her overnight feed:
We take the pump out of the backpack and hook it to the IV pole for 2 reasons. One is so that it's easier to plug it in. The location of the plug on the pump makes it hard to plug it in when it's in the backpack. The second reason is because we fill the pump bag as full as we possibly can at night and put 2 ice packs in to keep it cold so there's not really room for the pump. The feed goes into her J port and we plug in her G tube drainage bag to keep fluid from building up in her stomach overnight, which contributes to her vomiting in the morning. We also hang blankets on the sides of her crib to keep her from messing with the electrical outlet that her pump plugs into and to keep her from being disturbed by all of our comings & goings since she shares our room.
For the daytime feed, I try to do as much of it as I can when she's napping but lately she's not napping much. The rest of the time when she's awake, she has to wear the backpack or else be confined to a small space or in the car, stroller, or high chair.
During the day, she gets 1 oz of formula mixed with 7 oz of water. We give her 45ml at a time into her G tube (so it goes into her stomach, not her intestine) and give it every half hour. This is to give her stomach a little exercise and hopefully help transition back to gastric feeds at some point.
So there you have it. That's how we feed Raya. :)

Monday, April 4, 2011

The thing about bile

I earned another mother-of-the-year award this weekend. I hate when I do dumb stuff, or in this case, don't do something I should have done right when I should have done it.
Sunday afternoon we were watching General Conference and we thought Raya was taking a nap. Donny went in our room and could smell the formula as soon as he walked in the door, which of course meant that the little stinkerpot had pulled everything apart in her feeding pump backpack and had taken the tape off of the J tube extension tube (where she gets fed through) and opened the medicine port. When the med port gets opened, the formula goes out the med port and whatever is in her small intestine is also free to come out and go all over the place. Most of her right leg was saturated and a little bit on her left leg, and of course her bed was a mess. I pulled her pants off and we turned off her feed & turned her loose to go play with the big kids while they watched conference. I took all the bedding out of her bed and started a load of laundry in the washer.
We had meant to put her in the bath right after her formula leakage but got sidetracked and didn't. Usually when bile leaks out of the J tube, it's a bright fluorescent yellow color and we can definitely tell it's there but we didn't see any this time or we definitely would have washed her off right away. We noticed that her leg was getting a little red spot on the back but we thought it was because she was running around in a diaper and kept sitting on different boxes & the step stools from the bathroom. After a few minutes, it started to get really bright red and we realized that her skin was being burned by the bile that had leaked on to her pajama pants. About 45 minutes after we had taken her pants off, this is what her right leg looked like:
Feeling guilty, anyone?? She didn't seem to care but I felt terrible. I put her in the bath and carefully washed her legs but the red spots were so hot when I got her out of the tub and dried her off that I didn't want to make it worse by putting anything on it. It stayed pretty bright red most of the day yesterday but today it looks a LOT better:
It's a little more red than it looks in the picture but a HUGE improvement from yesterday. If anybody knows how to keep a 1 year old from being able to take the tape off the medicine port, I'm open to suggestion. I've seen a little device that you can hook to the extension tube to keep the kid from unplugging their feed but I've never seen anything to keep the med port closed. We wrap it with tape and I don't know how in the world she finds the end of the tape and peels it off, but she does. We have to still be able to access the port to give her meds but the rest of the time, we need her to leave it alone!

In other news, Raya has apparently had enough of me trying to get her to bite things and letting me put food in her mouth. She let me know today that she's not interested anymore. She's not gagging but she's clamping her mouth shut and turning her head again. It probably didn't help that I had to dig a lump of soggy paper out of the roof of her mouth again either. One step forward and two steps back, I guess. We'll back off again until she decides she's ready.

Friday, April 1, 2011


And just like that, Raya has decided that she no longer needs to gag and vomit when anything gets near/in her mouth. I don't know why the sudden shift but I'll take it. This week alone, I have been able to get the following things between or slightly past her lips:
*strawberry Dole fruit chiller (popsicle)
*fish stick
*metal spoon with cereal milk on it
*metal spoon with melted ice cream
*french fry
*Vanilla-flavored Peptamen Jr. formula (from a syringe and a special sippy cup that doesn't require sucking)
*water from a straw (I put my finger over one end and then put the other end in her mouth & let go so the water ran in)
*granola bar
*my finger (I let her gnaw on it where her molars are trying to come in)
*a fork with spicy sauce from the chicken I was eating
*Wendy's frosty
*Keebler grasshopper cookie

Okay, now don't get too excited. Just because she let a few things touch her mouth without gagging doesn't mean we're going to be slapping a "return to sender" label on the ol' Zevex (feeding pump) anytime soon. She has done SO well this week with letting food near and sometimes in her mouth and we're excited to see that much progress. She's rejected a LOT of things but we're happy with what she has done.
She still has a long way to go. It's like someone who is deathly afraid of water dipping their toes in it. They're still not ready to jump off the high dive, but it's major progress. Most of the things on that list didn't stay in or near her mouth very long. With most of them, she'd let them in between her lips or else bite down gently on them and that was it. With the liquids, she'd taste them a little bit and then rub her tongue with the back of her hand. A lot of times she makes funny faces and spits them out or wipes them out with her hand. She has demonstrated many times the fact that once something is in her mouth, she doesn't know what to do with it. She's forgotten how to suck, although lately she's been sucking on wet washcloths and sometimes the end of her extension tubes (gross, I know). She also doesn't know how to move food or liquid from the front of her mouth to the back so she can swallow it. She does pretty well with tiny amounts of liquid because she's good at swallowing her saliva, so as long as I only put in a couple of milliliters at a time, she can swallow it. If she feels like it. :)
The progress she's made this week has made me feel a lot better about our decision to go ahead with the GJ tube. Not that I didn't already know it was the right thing to do for her, but I've second guessed myself many times since September when we first tried to get it and October when she got it. I felt like putting it in was taking her as far as she could possibly get from oral feeds without going on TPN (IV nutrition, which she's never had to do). Having to get her to want to eat and then teach her how to eat was going to be challenging enough, but we added retraining her stomach to handle food to that list as well. Now I'm feeling like giving her stomach 5 months off from digesting food was the best thing we could have done for her. Not only did it allow the bleeding in her stomach to heal, but it also gave her a break from vomiting large amounts of everything that went into her stomach several times a day. Who would WANT to eat when you feel like vomiting all the time?

Like with a lot of things, there has been a trade-off for the new progress she's made. She has now gotten into the stage that most babies do when they're 6 or 8 months old where they put EVERYTHING in their mouths. Her favorites are rocks and paper. Yesterday we were at the park and she found a rock that was about 4" in diameter and maybe 1/2" thick and she put it between her teeth and carried it around like that. Until I took it away, which made her cry. I also had to keep prying little pebbles out of her mouth the whole time we were there. Before that, I had to scrape a chunk of soggy paper out of the roof of her mouth where it had been sitting for a couple of hours. I could tell she had eaten paper (the colored specks around her mouth and the brochure on the floor with a hole out of it were dead giveaways) but didn't see it in her mouth until later when I laid her down to change her diaper. She's scaring me a little because every time I turn around, there's some little thing in her mouth. Ironically, she frequently picks up crumbs of whatever the big kids drop on the floor but she never puts them in her mouth. Only non-food items go in her mouth. How she's able to tell the difference between a dried out black bean and a rock, I don't know. She's a smart one. :)
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