Skip to main content


Showing posts from April, 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 1/2m…

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 doct…

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 …

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…

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…

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, jump…

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 …

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 & cooperativ…

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…


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 tu…

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,…

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/d…

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 he…


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…