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Thursday, August 30, 2012

A few updates from the week

This week has been a real energy zapper. We've had 5 appointments this week (in 2 days) and weren't really too sad when appointment #6 got canceled for tomorrow and moved to next week. Tuesday started out with allergy testing. I'm very fortunate to have a dear friend who lets Kaida come play at her house whenever Raya has appointments that would be unpleasant for her to come to, like the allergist. (did not know exam rooms could be that small...)

We dropped Kaida off after we dropped the kids off at school and Raya was mad that I didn't get her out of the car too. In order to make her happy, I told her that we were going to the allergist and then to see her OT, whom she loves dearly. The allergist is Dr. S and Raya's GI (whom she also loves dearly) also happens to be Dr. S, so she was confused. When we pulled into the parking lot, I don't remember exactly what she said but it was something to the effect of, "Hey, Mom, what are you doing? This is NOT Dr. S's office!" Then for the rest of the day, she kept asking me when she could go see her GI doctor. Silly girl!

The allergy testing was not fun, of course, but at least this time the results weren't skewed by any of the medications she's on like what happened last time. We tested her for the major food allergens and a couple of other specific things that we've suspected issues with. Scratch testing is unpleasant and I felt bad for her because she has become a very tough little girl but after being poked with 2 sets of 8 prongy things and then 5 more individual prongy things, she was bawling and saying, "Owie! Ow! Ow!" I know it sounds terrible but I was actually relieved when welts started popping up on her back because I knew that the tests were at least working this time. Last time she had a zero reaction on EVERYTHING, even the positive histamine control that's SUPPOSED to have a reaction. Here's what she looked like a couple of minutes into the testing:
The giant red spot under the A is where the positive histamine control is, so it's good that there was a reaction. All the other little welts mean she was mildly positive for each of those things. I don't have the list in front of me right now but I know she was mildly positive for:
Peanuts
Tree Nuts (Brazil, hazelnut, cashew, pecan, etc.)
Milk
Wheat
Oats
Chicken
Rice
Shellfish

So yeah, that's a lot of stuff but I'm not panicking about it yet. Except for maybe the wheat. She was negative on soy, corn and eggs, which is good. Since the results were all fairly mild, her doctor ordered blood tests for all of those specific foods as well as an IgE so that we can get a better idea of how allergic she really is and if we need to keep her from eating any of those things. Wheat seemed to be her highest reaction on the skin testing, which I really wasn't expecting. We go back in a month to go over the results with her doctor and he'll let us know at that point if we need to cut anything from her diet. It always makes me laugh to make reference to Raya's "diet" since lately it consists of ice cubes and anything powdered. :)

The next appointment of the day on Tuesday was occupational therapy. Raya really loves both of her OTs. We've been SO blessed with wonderful therapists and I know that her quality of life is so much better because of the work they've done with her. Raya was in a much better mood by the time we left the allergist's office. Possibly because I fed her chocolate for being a good girl...
"MMMM...Yummy! I wieh choh-wih!" :) ♥ her!!

So lately, Raya has been a bit obsessed with Backyardigans. For a week or two she insisted on being called Tyrone. Then she started changing her name to various imaginary characters from the show. It's rather entertaining to hear a 2 year old yell, "NO! I not Raya, I Medusa!!" That one caught me off guard and gave me (and everyone at the library) a good chuckle. One of her favorite names is "Lady in Pink." I'm not a big Backyardigans fan so I'm only assuming she got it from there but it's SO funny to hear her say that her name is Lady in Pink. Back to OT, the black SPIO that she's been using was at the other clinic so she got to use a different one that day. It happened to be hot pink and SO stinkin' cute on a little girl whose name is frequently Lady in Pink.
See what I mean? We were DYING of cuteness. The necklace was a nice touch, don't you think? She did a pretty good job cooperating during that session but a lot of it was a battle of wills between her and her therapist. She is a teensy bit stubborn. She got to do some things that were a little bit different because her therapist wanted to work on her defensive reflexes a little bit. What I mean by that is that when does something that would trigger a defensive movement, like putting her hands out to catch herself when she falls or avoiding tripping over something, she's often not quick enough with those reactions. They did a lot of cross-plane work where Raya was having to balance while reaching across her body to grab a lego.
She really seemed to enjoy it but it took a lot of verbal cues to get her to do it right, especially since it was a new thing for her. She had a good session Tuesday.

After therapy, Raya fell asleep in the car and we picked Kaida up on our way home. Of course Raya woke up when I got her out of the car but she told me she was "So super tired" and laid down on the couch with her blanket. She's been doing that a lot lately. Even at 7:45 in the morning when we're leaving to take the kids to school she's telling me that she's so tired. All day long she tells me she's tired. It's been strange. While we're on the subject of strange things, she also sweats MUCH more than I think she should and at times when you wouldn't expect her to sweat. Even in the super cold air conditioned therapy room at OT she sweats like crazy, whether she's working hard or not. Then other times she doesn't sweat at all. I'm interested to see if that changed when the hot weather goes away, which hopefully will happen within the next 3 months. blech.

Since Raya hadn't had a formula feed yet that morning, she was "willy humbwee" and wanted something to eat but all she wanted was a Dum-Dum, so I gave her one. I didn't want to give her formula because her feeding therapist was coming and I wanted her to be "humbwee" so she would eat for her therapist. The whole issue of hunger has been interesting lately too. I think there is a part of her that grasps the concept that some gastric pains can be alleviated by eating, but I'm not convinced that the pain she's trying to alleviate by eating is necessarily hunger. Does that make sense?

From personal experience, I know that it can be difficult to discern certain gastric pains like gastritis and GERD from strong hunger sensations. We also know from prior history that Raya's gut doesn't always perceive sensation accurately anyway. This last week or maybe a little more than a week, she's been getting into cupboards and the pantry every chance she gets just to be able to shove SOMETHING in her mouth. Aside from the fact that half the fun for her is climbing to reach things she shouldn't have, I also wonder if she's doing whatever she can to try and make her stomach feel better. She's getting the same number of calories she's been getting plus whatever she's eating, so it's not that she's not getting enough calories or fluids. When she asks for actual foods that we know she likes, like refried beans, she might have one or two nibbles and then she's done. If she was really hungry and hunger was actually driving her motivation to eat, I think she would be taking more bites of foods she likes because we've seen her do it before. Add in the fact that she is once again bleeding from her stoma and this time it doesn't seem to be responding to the Carafate like it usually does, and I think her "hunger" is actually just gastric pain. *Sigh* It's SO hard to know what's going on with her. I used to think that it would be so much easier when she could talk and tell me how she was feeling and what hurt. She can jabber up a storm but she's still pretty much incapable of giving me any details about what's bothering her or if anything even is.

So back to feeding therapy. Raya had a pretty decent session but it still ended in her not swallowing what was in her mouth, and therefore not getting her M&Ms or ice cubes. Her therapist and I may not always completely agree on things (she's an expert with feeding disorders and I'm an expert on Raya) but we agree that Raya needs a break from therapy. I think we all do. I've made no secret of the fact that feeding therapy is hard for me in more ways than one. I would imagine that it's probably frustrating for a therapist to work with a child for however long we've been seeing this therapist (can't remember...) and see some progress but also see a lot of stagnation and some regression. It makes me sad that we are at 2 years and 9 months old and still almost completely dependent on the feeding tube. I can still remember the early days with the NG tube when I naively believed that she'd have the tube for a couple months tops and then be back to eating everything by mouth. We've made huge leaps since then but we are still so far away from being tube free. I'm okay with the tube, it's just hard not to take it personally or feel like it's my fault for not working harder to get her off of it.

Anyway, we will be taking a break for the forseeable future from feeding therapy. One of the big road blocks for us is that our schedule is no longer working for Raya. We had scheduled feeding therapy to follow OT with the hope that she would be nice and calm and organized after OT so she'd be able to sit through a feeding therapy session. The gap between OT and FT had to get bigger than originally planned because the feeding therapist has to drive quite a ways to get to our house from her previous appointment. Raya has been wearing herself out in OT and is crabby and tired by the time we get home so she does crazy things to keep herself from falling asleep during FT. If her therapist has a different opening in her schedule that would work better for Raya, then we'll start up again or if we happen to find another therapist that has openings. She's going to wait a month before she does a discontinuation report and if nothing opens up in her schedule, then she'll discontinue Raya. She won't do a discharge because that would imply that Raya doesn't need feeding therapy anymore, but she'll discontinue so that she can give Raya's slot to someone else.

I've felt like this was coming for about a month but it's kind of scary now that we're here. Even though I understand that she's not saying Raya is a lost cause when it comes to eating, having someone tell you that your child needs a break because they're not progressing stings a bit. We went over all of the "rules" that we try really hard to follow and discussed a bunch of things that I need to bring up at Raya's preschool evaluation, which was very helpful. I'm feeling slightly more prepared for that even though I still don't really know what to expect.

Yesterday was rough just because the big kids got out of school at 12:50 so when it was time to go pick them up, I had to wake Sleeping Beauty from her peaceful slumber on the floor next to her crib.
(And for the record, we don't encourage our children to use plastic bags with wet diapers in them as pillows, nor do we support them in leaving syringes laying all over the floor.)

Today was a long but very fun day. Raya's big sister turned 5 and we spent the entire day doing fun things in between Raya's appointments. First, we went out to breakfast:
Raya wanted waffles too so I got her a plate and gave her some bites of mine. She mostly licked the syrup off the plate and ate ice cubes.
After breakfast, we went to the GI clinic to have Raya's allergy/IgE labs and some other GI labs drawn. The girls read magazines while we waited and Raya kept kicking off her shoes and leaving them in various locations in the giant waiting room but refusing to let anyone else touch them. She somehow managed to make it out of the house with mismatched flip flops that were both the left foot. Oops.
Raya is so tough. I think if it hadn't been for the trauma of the allergy tests this week, she wouldn't have even cried for her blood draw. As always, she got up on my lap in the chair and then stuck her arm out for the lab tech, who saw her do it and made a sad face. Because it's a little sad that a 2 year old knows exactly what to do in that room. We have a great phlebotomist there who has had a good streak of getting in a good vein on the first stick and her streak continued today. She had to draw 4 vials of blood because of the number of labs ordered and Raya cried the whole time but she held completely still anyway. When she was done, she picked out pink coban and 2 princess stickers and we left. We had books to take back to the library and time to kill before OT so the girls read books for a while and we hung out in the air conditioned library.
It didn't take long before she had used up all her ability to focus and behave in public so we left the library and went to OT, but not before taking a lousy self portrait of the 3 of us:

Raya had a good therapy session today. She didn't seem to have a whole lot of energy and we didn't use a SPIO today so she bounced all over the mat and had her own little agenda while she did it.
She also fell off of the scooterboard a lot, which doesn't usually happen. She was just off her game today.

After OT, we went to the mall so Kaida could get the bunny she's been wanting from Build-A-Bear. By the time we finished that and did a little bit of clearance shopping at Children's Place, the girls were worn out so we went to have ice cream.
I'm anticipating that there will be fallout from letting Raya eat ice cream but she was really into it and we were celebrating so I let her anyway. I wolfed down about half of both of their ice cream cones to keep them from making a huge mess and by the time we were all done, we'd all had way too much ice cream. We had a good time though. By bedtime, Raya was an exhausted emotional wreck and alternated between saying, "I so tired" and "I want you!" until I finally put her in bed. And then peace was restored to our house. :)

Monday, August 27, 2012

Feeding Tube Terminology: G tube words

One of the many things I didn't have a clue about before Raya got her G tube was the fact that there are LOTS of different kinds of G tubes, all with similar but different features & functions. Some of the terminology that was tossed around in the beginning was very confusing. When I met with the surgeon to pick out a button for when Raya's initial tube was ready to be changed, they pulled a bunch of tubes out of a cupboard, put them down on the table in front of me and said, "What kind do you want?" I had NO idea what to pick, all I knew was that anything would be better than what we had at that point.

Here are a few things I wish someone could have explained to me before Raya got a G tube:

1. What the heck does PEG mean?
PEG stands for percutaneous endoscopic gastrostomy. In other words, a gastrostomy tube is placed through the abdominal wall using an endoscope to visually guide the surgeon to the best location to place the tube. The term PEG is used to refer to the procedure and to the actual tube placed during the procedure.

2. Okay, if PEG is the name of the procedure, then what's a PEG tube?
Usually when someone talks about a PEG tube, they're referring to this style of tube:
Photo courtesy of Kimberly-Clark
A PEG-style tube is an all-in-one tube, meaning that no separate extension tubes are needed in order to use this tube for feeds, unlike button-style tubes that require extension sets. There are also other tubes of this style. PEJ tubes (aka PEG-J) go directly into the jejunum (hence the J). There are also transgastric jejunal tubes that go through the abdominal wall into the stomach but bypass the stomach and go straight to the small intestine. There are similar GJ tubes that have ports into the stomach and small intestine.

This whole "PEG" thing was very confusing to me at first because I heard so many words being tossed around interchangably and didn't know what the differences were between PEG, button, and G tube. At our surgical consultation, I thought I heard the doctor say that Raya would be getting a button and then changing to a different button later. It all went in one ear and out the other because I didn't know what she was talking about anyway. Then I mentioned it to a friend who had recently gotten a G tube and she said that Raya would probably get a PEG tube first. See what I mean? So confusing. What I later found out was that the kind of tube the surgeon puts in initially depends on A. surgeon's preference, B. the hospital's preference, C. any specific needs of the patient. Raya never had a PEG tube because our surgeons & hospital only use them if there's a specific reason a child can't get a button initially. Which leads me to...

3. What's a button-style tube and what does 16fr 1.5 mean?
A button-style tube is a much smaller and more descrete feeding tube that can be easily concealed under clothing. There are many, many different brands of G tubes but I'm only going to talk about the most common ones, and mostly just the ones Raya has had or that we've considered using. There are a lot of things to love about buttons. For one, they're smaller and easier to deal with than PEG tubes. (or at least I imagine they are since we never had a PEG tube...)

One of the most common complaints I've heard about PEG tubes is that there's no clamp on them. This means that unless you kink the tube and hold it upright when you're opening the cap, whatever is in the stomach is free to come out. The beauty of buttons is that when you're not using the tube, you can unplug the extension tube and all that's left is a nice little button. You don't have to try and tuck it into clothing or keep it from popping open and leaking, like with a PEG tube. Another bit plus is that extension tubes come with a clamp on them so that when you're giving meds, you can clamp the tube in between syringes to keep everything from coming back out.

The "16fr 1.5" is the size of the button. The "french" size, in this case 16fr, refers to the diameter of the inside of the tube. The 1.5 means that the length of the portion of the tube that goes through the stoma from the inside of the stomach to the outside of the abdomen is 1.5cm long. French size varies from brand to brand but some are as small as 10fr-12fr and as big as 20fr. The stoma length can go from 1.0cm to 3.5+ depending on the size of the patient.

4. What is an extension tube?
In order to use a button, you need extension tubes.

 
 
 They come in different lengths (2", 12" and 24"), with and without medicine ports, and either right angle or bolus.
 


5. What's the difference between Bard, MicKey, AMT Mini One, and Nutriport?

Bard Button:
The G tube Raya got at her initial placement was a Bard button. The first time I saw it after she came out of surgery, I loved it. It was small, flat and wasn't taped to her face. Beautiful.

The Bard is VERY low-profile, meaning that it doesn't stick out very far from the abdomen. For a baby who needs to be having tummy time, low-profile is a huge plus. But.
Once she recovered from her surgery and returned to her normal activity levels, however, I realized that I although I loved the concept of a button, I actually hated the Bard button. She got HORRIBLE granulation tissue with the Bard button. Our hospital only stocked 2 sizes, both of which were too big for Raya. The stoma length was too long for her so there was a lot of friction, which led to granulation tissue, and a LOT of leaking from around the tube.
Another problem we had with the Bard was that she was a very active and mobile 8 month old and the extension tubes on a Bard button don't lock into place. The only way we could keep the extension tube from coming out was to use a whole lotta' tape to keep it in. We rotated back & forth between her left side & right side because all the tape was so rough on her skin. (we've learned a lot about all the different kinds of tape since then and I wrote about all of that here and here)
It was unpleasant. The other problem, which was a rather big problem, was that because Raya was on continuous feeds, the extension tube was plugged in 23+ hours a day. That made the backflow valve in the button wear out VERY quickly, so if the extension was not plugged in, whatever was in her stomach was free to flow out. Cleaning the extension tube was very difficult because it meant having to peel off all the tape holding the tube in and trying to keep her stomach contents from pouring out while I did it. While we're on the subject of Bard extensions, another thing that makes the Bard button a little more difficult to deal with is that the extension tubes have to be ordered by french size. Raya had an 18fr (which is the smallest fr size Bard makes, rather large if you ask me) so we could only use 18fr extension tubes. Other types of buttons are not specific to french size.

There is another significant difference between the Bard button and the Mic-Key, AMT and Nutriport: what keeps it in place. The Bard is a non-balloon button, which means that it has a hard bumper on the inside (not sure what it's made out of...plastic, silicone??) that keeps the tube from coming out. AMT also makes a non-balloon button, which I've heard is wonderful. Bard buttons can only be placed endoscopically, and can either be removed endoscopically or be yanked out. Really. That's what our surgeon was going to do with Raya's but she ended up needing an endoscopy anyway so it was cut and the bumper was pulled out through her mouth during the endoscopy. I was glad. Yanking sounded so awful.

One positive thing I have to say about the Bard button was that the special extension tube made just for venting was AWESOME. It had a long spike that held open the internal valve and went all the way through the tube so if there was ANY excess gas trapped in Raya's stomach, all I had to do was plug an empty syringe into the venting tube and pop it into her button and whatever was in there came out. It saved us from a couple of close calls with near-vomiting incidents. :)



Nutriport Button:
Photo Courtesy of BC Children's Hospital
The only reason I'm even mentioning the Nutriport is because that's what I had planned on getting after the inital 6-8 weeks with the Bard. When we had Raya's surgical follow-up, the medical assistant brought in about half a dozen different G tubes and told me to pick one. Compared to the Bard, they all looked great to me! 

What appealed to me about the Nutriport was that the overall size of the exterior portion was close to the size of the Bard, the extensions locked into place, and they even had a little clip that slid over where the extension connected to the button to keep it plugged in. With all of the leakage and disconnects we'd had with the Bard, locking mechanisms greatly appealed to me. Another thing I liked about the Nutriport was that it made very little contact with the skin directly around the stoma. Air flow seemed like a good thing. The drawback of the Nutriport (at least for us) was that it's not a very commonly used G tube, so if we ever had a problem with Raya's tube and had to get it replaced at the hospital, they wouldn't have a Nutriport to replace it with so they'd have to put in whatever they had. Also, if she was ever hospitalized with a Nutriport, I would have had to take our own extension tubes and anything else we'd need for the tube. 
In spite of that, I still decided on the Nutriport but before we could even get it ordered Raya ended up needing to have an endoscopy done. It was 5 weeks out from her G tube surgery and her doctor wanted to try jejunal feeds so she took out Raya's Bard button and planned to have interventional radiology put in a GJ. They couldn't get the GJ in, so they sent us home with the only balloon button our hospital keeps in stock: a MicKey.

MicKey Button:
Raya's first MicKey button, Oct. 2010
MicKey buttons are probably the most commonly used G tube buttons. At least in the US. MicKey buttons are great. Especially when your only other feeding tubes have been an NG and a Bard button and that's all you have to compare it to. :)

There is much to love about the MicKey. First and foremost, the extension tubes lock into place, which is a beautiful thing. After several weeks of going through roll after roll of tape trying to keep the extension tube in during feeds, locking extensions were wonderful. Another great thing about the MicKey (and any balloon button) is that because they have a balloon to keep them in rather than a plastic/silicone disk like some of the PEG tubes & the Bard button, they don't have to be changed under anesthesia or even at the hospital. Out of all the button changes and accidental pull-outs Raya has had since she got her first MicKey, there has only been 1 that I can think of that was done at the doctor's office and that was only because we were going from a GJ button back to a G button so the doctor wanted to do that one herself. Every other tube change or re-insertion has been done by myself or Donny. (and the one Ashtyn did a couple weeks ago)

Another great thing about the MicKey button is that because it's so widely used, we didn't have to supply our own extension tubes at the hospital or worry about having to switch to something else in case of emergency. MicKey buttons and all their accessories are readily available. The fact that the extension tubes aren't specific to french size is really nice too. That makes it so that if you run out & need extensions, you can find people who have extras and it doesn't matter what french size either of you has.

There have been some drawbacks to the MicKey button. In the 9 months that Raya had a MicKey (between her GJ tube and the current brand of button) we had at 3 incidents where the balloon spontaneously popped. Once during a nap, once in the early morning when she was still asleep, and once while she was in her high chair. Those are scary, especially the two while she was asleep, because the stoma can start to close within 20 minutes if you don't see it happen and don't put the tube back in right away. To the credit of Kimberly-Clark, if a balloon pops, they are great about replacing the button and they like to have defective buttons sent back to them so they can analyze what may have caused them to fail. They have a great facebook page and are quick to respond, which is nice.
We also started to have a LOT of accidental pull-outs with the MicKey, mostly due to how active Raya is. Several of them happened while she was climbing out of her crib (the little stinker!) and others happened while she was playing. When the extension tube is connected, the MicKey button sticks out almost an inch from her stomach so it is a little more likely to get caught on things than other lower-profile tubes. She also started to have problems with irritation of the scar tissue around her stoma which may or may not have had anything to do with the actual button. Because of all of those factors, we switched to the AMT Mini One earlier this year.

AMT Mini One:
Out of all the G tube buttons we've had so far, the AMT Mini One has been our favorite. On the outside, the button is very low-profile but still has a locking mechanism to keep extensions plugged in. Everything is clearly marked on the tube, including a marking with the recommended amount of water on the balloon port, since the amount varies with the size of the tube. Another great thing about the Mini One is the shape of the balloon. It's more of a flat "apple" shape, so it stays more flush against the inside of the stomach, which can help prevent leakage and also can reduce irritation from pressure around the base of the stoma. The shape of the balloon is supposed to also reduce the likelihood of the tube getting pulled out accidentally and while Raya's has still been pulled out several times, it's much less frequent than with the MicKey button.

For comparison's sake, here are some side-by-side shots of the MicKey and AMT Mini One.


These two buttons are the same size, 16fr 1.7cm. In this picture, you can see that the plastic disc that the extensions lock into in the MicKey (top) is larger than the plastic disc in the Mini One. This is the where the bulk of the size difference comes from. Design-wise, they're very similar but there is just less bulk to the Mini One. You can see on the balloon port of the Mini one where it says 6ml (what's not rubbed off, anyway) and I like having that there as a reference for how much water should be in the balloon. Both buttons have the size clearly marked.


You can see in this picture how much more material there is in the exterior portion of the MicKey button than the Mini One. Another thing you can see in this picture is the difference between the shape of the bottom ends of the tubes. This is one thing that I prefer about the MicKey over the Mini One. It is MUCH easier to get a MicKey button back into Raya's stoma than it is to get a Mini One in. She has a band of thick, fibrous scar tissue around her stoma and the tip of the MicKey button is a little smaller & more pointy than the tip of the Mini One. Out of all the times I've put in her Mini One, there's only been two where I was able to get it in without using a stiffener to keep it straight while I push it back in. It's not a huge negative and the positives definitely outweigh that negative.

Here's another picture that I borrowed from www.amtinnovation.com (which is a VERY helpful website, by the way):
The Mini One balloon doesn't extend as far into the stomach as the MicKey balloon, which has been nice for Raya. There were times with the MicKey where her stomach would kind of suck the balloon down into her pylorus like it was trying to digest it and that doesn't happen with the Mini One. Another advantage to the shape of the Mini One balloon is that the balloon retains its shape with slightly more or less water in it. Essentially, it's adjustable. If you don't have enough water in a MicKey balloon, it comes out. Period.

Another great thing about the Mini One is that you can use MicKey extensions with a Mini One button. Here's what the Mini One extensions look like:
 
 
 
 
Personally I don't care for most of them. The ports are made out of a squishy material and we have a harder time keeping the med port closed. (and we all know that keeping the med port closed is enough of a pain already) Not to mention that when we switched, we already had a large stockpile of MicKey extensions, so we just kept using what we already had & were used to. Mini One extensions fit in MicKey buttons too but I've never tried to feed a MicKey with a Mini One extension. The only Mini One extension that I really do like is the right angle straight port. We stopped using Y port extensions of any kind for feeds because it's just easier to not deal with the med port. Having the med port come open can ruin your day. Or night.

6. What's the difference between a G button and a GJ button?
A G button feeds directly into the stomach. A GJ button uses the same stoma as a G button but has one port that opens into the stomach and one port that opens into the jejunum. Currently there are only 2 GJ buttons on the market: MicKey GJ and AMT GJet. When Raya had hers, the AMT GJet was still an idea on paper in the patent office that nobody had heard of yet, so we had no choice but to go with the MicKey GJ. This is what it looks like without extensions plugged into it when it's brand spankin' new:

Here's what it looks like with the extension tubes plugged in (which is how it looked ALL the time for Raya):


And here's what it looks like when it's not in the stoma:

 
7. How long will all of these tubes last?
The exact amount of time will vary depending on the amount of use and the type of tube. Non-balloon buttons can last up to a year or two depending on use. Balloon buttons (like MicKey & Mini One) can supposedly last for 3-6 months, but in our experience, we're DYING for a new one by about 2 1/2. Most insurance companies will only cover 1 every 3 months. The longest we've ever had a balloon button last was one of the GJ buttons Raya had. We made it 5 months before we HAD to have it replaced because one of the ports broke out of it. It would have needed replaced soon anyway because the ports were leaky. Other than that one, the longest we've ever gone without having to change a G tube was about 3 1/2 months.

Those are a few of the things I wish someone had explained to me early on. Learning all the terminology involved with tube feeding is like learning a foreign language and I have a lot to learn still but I know a lot more of it now than I did 2 years & 7 months ago. :)


**updated 6-13**

Saturday, August 25, 2012

No, really, she is a sweet and wonderful girl

I think I've scared people by posting about all the mischief Raya gets into (because lately there's been so much of it). Like how on Thursday morning I went upstairs to print some papers and when I came back down, she was sitting on the floor in the living room (the only place in the whole downstairs where there's a rug) helping herself to the Country Time lemonade mix.
 
While I was cleaning it up, her OT called and said she'd had cancellations and wondered if I could come in early. I believe my exact words were, "Sure, let me finish vacuuming lemonade mix out of my couch & rug and then we'll be right over."
 
Raya has suddenly taken a liking to powdered things. Last week she ignored my warnings and took a big old lick of her handful of flour. Then there was the powdered sugar on Wednesday, then the lemonade mix on Thursday, and this morning it was some chocolate "Morning Moos" drink mix powder. I have GOT to get a lock for the pantry door too because she's become rather stealthy at pushing chairs across the kitchen floor whenever I leave the room. I caught her sitting on the couch gnawing on a Now and Later yesterday. I didn't know we had any of those but she found them by pushing a chair into the pantry, putting the stool from the bathroom on the chair (which is already a counter-height chair, by the way), and getting into a bag of candy way on the top shelf from a birthday party somebody went to last summer.
So yes, there is mucho mischief. BUT. She is also a very sweet, cute and funny girl. If you're not trying to get work done that takes your immediate attention away from her, she's quite fun to be around. We've been making a lot of Tubie Friends lately and it has rekindled her love for her bear, Tubie-rina. When I vented Raya's stomach before her nap yesterday (i.e. burped her with the G tube), she decided that Tubie-rina needed to be fed and burped too and insisted on having the venting tube & syringe connected to Tubie-rina's G tube. I obliged her and got a good giggle when I saw her pushing on Tubie-rina's belly just like I push on hers when I vent her.
 
Things like that make me laugh, make me sad and melt my heart at the same time. Having a 2 year old that knows how to burp a teddy bear through its G tube is sad but also somehow adorable. The fact that she got mad when no loud burping sounds came out of Tubie-rina like what comes out of Raya's tummy was hilarious. I need to go to Build-A-Bear and see if any of their little sound boxes make burping noises. :)
 
This morning we had to take my car in to get something fixed and on the way home (at 7:00) she said, "Mommy, I eat sumpeen?" in her very sweetest voice. I told her, "Of COURSE you can eat 'sumpeen'! By all means, eat something!" When we came home, all she wanted was cold refried beans straight from the fridge, so that's what she got. I can't watch her eat cold refried beans at 7:00 in the morning. It's gross. It made her happy though and those are good oral calories for the day. But still gross.
 
She's getting back on the right track. (knock on wood) I've been venting her more, using Farrell valve bags to vent during feeds when she's asleep, and not really stressing about oral intake. We can tell that she's feeling better because aside from her strong need to climb on things and eat various powders from the upper shelves of the pantry, she's been much happier and easier to deal with this week. As long as you don't let her out of your sight for more than a minute. (see, there I go again...this must be why it's hard to find a babysitter for her...)
 
I've had such a busy week this week between school, work, family, appointments, a little car problem, and the fun things I wanted to fit in, but I really love my life right now. Aside from having a wonderful husband and 4 awesome kids, I'm so blessed to be a part of a community of support (that just hit 7,000 "likes" on facebook today. Yay!) where I can share what I've learned through our own experiences as well as from other tubie mommas with people who are just starting out on their feeding tube journeys. It gives meaning to the struggles we've been through with Raya when I'm able to share our story with other people facing similar struggles. Hearing what other people go through also keeps me humble and makes me thankful that what we've dealt with has been mild compared to what it could have been. On top of that, I have the privilege of helping to "take the fear out of feeding tubes, one Tubie Friend at a time" by volunteering for Tubie Friends. The kids who receive these stuffed animals remind me that I can do the hard things I'm trying to do right now and help me to keep my life in perspective. If you're ever struggling with things going on in your own life, the best remedy is to get outside yourself and do something for other people. There's no way you can feel sorry for yourself when you see what chronically ill children go through while keeping a smile on their faces. So on that note, I'd just like to say that although this wasn't where I pictured myself before Raya was born, I love the "tubie" life for all of the positive blessings & wonderful people it's brought into my life, and so thankful for my sweet girl who is the reason we're living the tubie life.


Wednesday, August 22, 2012

Rethinking the Prilosec reduction

I've decided that maybe cutting the Prilosec in half was a bad idea. Or perhaps accidentally missing the morning dose when she's no longer getting a night dose was a bad idea. Then there was the salsa she ate for dinner last night... Whatever the cause, she had a lousy night last night. She woke up screaming for me at 11:45. When I went to her bed, her eyes were still closed but she was rolling around and making a yuck face while swallowing repeatedly. Reflux. Then she'd cry a little and roll around some more and I could tell she really didn't feel good. I was actually afraid she was going to throw up so I got her up and brought her and her blanket to the couch with me.

Poor kid did not feel good. I vented her stomach to see if she had any air bubbles that were bothering her but nothing came out so I gave her a dose of Prilosec (probably too little too late) and a little drink of water to wash down the "mouth puke" that she kept telling me about. I tried to keep her propped to a 30 degree angle but she's much too squirmy and kept sliding down. A couple times per minute, she would make a yuck face and be swallowing whatever was coming up. I got ready for puke but luckily it never came. I really wanted to put her back in bed so I could go to bed too but I wanted to make sure she wasn't going to throw up first. Of course she wanted to watch Backyardigans and I was sleepy so I let her. We snuggled on the couch and I went to sleep while she watched Backyardigans. She woke me up when it was over so I could turn on the next episode. I really don't know how many she watched but finally sometime after 2:00, I woke up and she was playing with a box of medical supplies. She seemed to be feeling better then so we both went back to bed.

I was SOOOOOOO tired when the alarm went off this morning. I'm not used to sleep deprivation anymore. After she climbed out of bed, I got up and started getting ready for the day. A few minutes later I went into the kitchen and she was laying on the floor licking peanut butter off of her hand. Apparently she's forgotten that peanut butter made her throw up a few days ago. This time she had climbed up onto the counter all by herself and retrieved the jar of peanut butter from the cupboard. After we took the big kids to school, I went in my room to use the bathroom (heaven forbid Mommy should go potty during waking hours...) and Kaida came banging on the door saying, "Mommy, Raya got into the sugar!" I thought, no way, she couldn't have gotten into the sugar, it's on the top shelf of the pantry. *sigh* wrong...
She looked up at me, said, "Yummy sugar!" and licked her hand. It was powdered sugar, by the way. It wasn't on the top shelf of the pantry, it was on the shelf below that. In the 5-ish minutes that I was out of the room, she pushed a chair all the way across the kitchen and into the pantry, climbed up on the chair, got the container of powdered sugar off of the second from the top shelf, took it in the living room, and helped herself. To her credit, she was trying to clean up the floor with a baby wipe with one hand while she licked sugar off the other.

The day didn't really get much better after that. I put her in bed for a nap but she never went to sleep. Then she pooped. That always puts an end to any chance of a nap. By 4:00, she was a weepy, clingy mess. I tried to vent her stomach around 5 (4 hours after her last feed) and got a pretty good amount of formula with a pinkish tint to it. Not sure what that was from, but it seemed like too much formula for 4 hours after a feed. By 6:00, she was in full-on meltdown mode.
I let her lay there for a few minutes and waited to see if she'd pull herself out of it but she was just too tired. I took her in my room where it was pretty dark and turned on some relaxing music on Pandora. We snuggled on my bed for a while until we both dozed off. She's been fussing in her bed off & on for the last 30 minutes so I hope we don't have a repeat performance. Mommy needs some sleep!

Tuesday, August 21, 2012

A bit of disappointment but we're not giving up

This is quite possibly my longest blog post ever but there's a lot to talk about. I feel like I say this in every blog post (or at least all the Tuesdays) but today was such a long and tiring day! At least it didn't start out with Raya sprinkling Apple Cinnamon Chex from one end of the house to the other though. (that was yesterday) Oh wait, it did start with a super soggy and poopy diaper that leaked all over her bed though.

We dropped the big kids off at school and then I decided it was time to pull all of the dead cornstalks out of the garden so I could weed whack the stupid bermuda grass that grew when I started watering the garden. Raya kept peeking her head out the door and I'd say, "Raya, you need to go in the house." She would smile and say, "I AM!" And technically she was right, her head was the only thing that was outside. The girls REALLY wanted to come out and "help" me so I cleared all the overgrown stuff out of the way and let them hunt for hidden treasure, aka onions. 

It was all fun and games until Raya found a plastic BB and put it in her mouth. That was when I told the girls they HAD to go in the house while I used the weed whacker. I stink at it but at least it looks better out there. It was only about 90 degrees but it was really muggy so we were all in desperate need of showers when we came in, which we took after I snaked out the clogged bathtub drain. It was only fair since it was my ridiculously long hair that clogged it to begin with. Once Raya was all clean and fresh, I laid her on my bed so I could vent her puffy tummy. She is now very amused by the noise of her tummy burps. She thought it was SO funny and kept saying, "More burp! More burp!" Then we did her hair and she HAD to have mousse in it. She's funny like that. Her hair is curly in the back but straight on the top & in the front so it just ends up looking crazy if I leave it down. We did pigtails and she picked out her favorite zebra pants & shirt to wear to therapy. Thankfully today was not one of the days where I have to wrestle her into her clothes. Those are never fun. It did take her 10 minutes to put her flip-flops on. We still haven't found the match to either of them so she wore mismatched shoes to therapy again.

She had a great OT session today. The SPIO kit that we've been using went back to the other clinic on the opposite side of town so we'll be seeing how she does without it for a while. I could tell a difference in some of her activities today. The biggest difference was her trunk stability (or lack, thereof) while she was jumping on the air mattress. Her core is weak so after about 30 seconds to a minute of jumping, she starts to bounce all over instead of being in control of where she jumps. It also becomes apparent after a few minutes that the strength in her legs is not equal. The crazy thing is that she IS able to jump for a long time. She's a big, solid, tough girl so it's easy to miss her deficits if you don't know to look for them, which isn't a bad thing I suppose. 

One of the biggest hindrances to Raya's progress lately is her lack of ability to sustain her focus on a task for very long. She is very easily distracted and sometimes I think she's so used to getting distracted by every little thing that she finds ways to distract herself. Since helping her learn to focus is one of our main objectives now, when she's doing something during OT and she's staying interested, her therapist lets her keep going until she says she wants to stop. Today it was jumping. She was like the energizer bunny! I don't think I could have even done what she did today. Every time her therapist would ask her if she was all done or if she wanted more jumping, she would whisper, "more." Not sure why she feels the need to whisper since she yells everything at home but whatever. For almost 20 minutes, she was a bouncing ball of hot pink & zebra print.
Every time she'd flop down to rest, her therapist would ask her if she was done or if she wanted more and she'd get up and start jumping again. Girlfriend is developing a great work ethic already. Therapy now, olympics in 20 years. :) 

Finally her little legs just couldn't bounce her anymore so she sat down to rest.
And please ignore the zig-zagged part in her hair. Parting hair straight on a moving target is hard.

While Raya was doing her therapy, Kaida was having the time of her life in the ball pit. She has a hard time at therapy sometimes because all the little kids there look like they're having so much fun and she doesn't usually get to do what they're doing. She got her feelings hurt a little bit because one of the therapists turned on the bounce mattress and Kaida thought she had invited her to jump on it but it turned out she wasn't talking to Kaida. She was embarrassed and sad so then she sat on my lap and cried for a minute and then played Angry Birds on my phone until we were done.  Both of the girls wore themselves out and fell asleep in the car by the time we got home. I hated to have to get them out of the car.

I almost got Raya onto the couch without her waking up but she wanted a drink of water. After that she was wide awake again. She was begging for food since we were eating lunch and we had another whole hour before her feeding therapist came so I gave her a formula feed. I try not to feed her before therapy because then it's harder to get her to want to eat but it was 12:30 and all she'd had all day was 2/3 of a Nutri-Grain bar and a little water. She had a little snuggle on the couch with Tubie-rina while her backpack fed her tummy.

On to the disappointing part. Feeding therapy went pretty much as I had anticipated. (not great) I usually sit at the table with them but I was making cookies so I didn't this time. They started with cold, straight-from-the-fridge refried beans since that's what Raya's been eating lately. Her therapist brought mini M&Ms as a motivator this time since she's not responding to ice & water anymore. (had to pull out the big guns...) She did fine eating the beans but it went downhill once they moved on to chunks of apple. Raya had no desire to swallow the chewed up apple so she held it in her mouth. She's been doing that ever since Friday when she threw up from eating the crunchy peanut butter. 

When she has something in her mouth that she doesn't want to swallow, her therapist will remind her that she doesn't get her M&Ms until her mouth is clean. It was working beautifully up until about 3 weeks ago. Now it only works if she cares enough about the motivator to swallow something that she doesn't want to swallow, which is happening less and less. After she reminds Raya to clean her mouth, Raya sometimes tries to get attention by acting silly. She doesn't really do it to me but she does it to her therapist a lot. Today was the worst I've seen her act. She was waving her arms around, slapping the table with her hands, kicking her chair, pushing herself back from the table, staring out the window, and whatever else she could think of to try and get her attention. Her therapist kept a straight face the whole time and looked away so Raya knew that it wasn't working. I didn't make eye contact with her either but I had to turn my back a couple times to keep her from seeing me almost laugh. It really wasn't funny though. I've never seen her act like that before and it was one of those moments that tugs at my heart strings for her because behavior like what she was doing is not socially acceptable. It's moments like that when I think, "Crap! How is this kid going to function in life if she keeps doing this?!" and THAT'S why we're still doing therapies.
After what her therapist decided was a reasonable amount of time, she asked Raya one more time if she was going to clean her mouth so she could have her M&Ms, and when Raya didn't, she told her she was done and got her down from the table. We talked for a while after that because there was a lot to talk about. *sigh*

At our session 2 or 3 weeks ago, Raya got her little heart broken because her therapist told her she'd take away the ice Raya wanted if she didn't swallow, and she stuck to it. Raya cried for 15 minutes after that. Her therapist really expected that to be a turning point for her but the last couple of sessions have been downhill. We agreed that one factor is the fact that Raya's been working really hard at OT and so she wears herself out, doesn't have a nap, and then has feeding therapy when she can barely keep her eyes open. (part of the reason for the squirminess) We also discussed the possible reasons for the lack of progress (and I would even venture to say regression). We're not in complete agreement about that but it's okay. I feel like Raya was already going backwards a bit and then when she threw up after eating the crunchy peanut butter, it was like the straw that broke the camel's back and she will only swallow what she really wants to swallow now. Her therapist agreed that Raya definitely made an association between eating and vomiting again but didn't really think that was much of a factor in her not swallowing much anymore. I don't remember her exact words now but I think she felt like it was more that she had just lost her motivation. 

She also felt like the lack of hunger from getting a tube feed an hour before therapy played a part in it. I still have a hard time fully accepting that explanation because having been around Raya all the time, I have never seen much of a correlation between times when she should be hungry and her eating. Her therapist told me that although Raya still doesn't seem to make the connection between feeling hungry and satiation, it doesn't mean that her body can't feel satiated when she's eating. She may not consciously understand that when she feels hungry, eating makes her feel better but that lack of understanding doesn't take away the feelings. It makes sense and I understand what she's saying, it's just hard for me to accept that when I've seen Raya go until 5pm without getting a formula feed (unintentionally, of course) and not seem to react at all. I do see what she's talking about though. I also wonder if keeping her on a once-a-day dose of Prilosec was a mistake because there was definitely a correlation between her running out of it and being completely off of it for a few days, then going back on half of what she'd been on before and the decline in her eating. At the same time though, I just hate having to keep her on it and if she can stay on half the original dose then I'd rather do that.

After feeding therapy, the girls helped me put the cookie dough on baking sheets. Kaida did a pretty good job lining them up evenly. Raya, however...
I love how she put one ball of cookie dough in each corner and then piled the rest in the middle. :)

The rest of the evening went well and she even ate some dinner. I cooked black beans in the crock pot and made fresh salsa and she ate a little of both, a few nibbles of tortilla chip, and a little piece of a tortilla. I considered it a success. After dinner she laid on my bed looking at a book while I put clean sheets in her bed. When I looked over at her, she just looked so grown up! I think it was the watch on her arm that did it. :)


So where do we go from here. I think her therapist was really disappointed today that things didn't turn around. So was I. We talked about the appointment time (1:30 on Tuesday after a 11:00 OT appt) being part of the problem but right now there's nothing else available so we're stuck with what we've got. Her suggestion was that we have our session next week and see how it goes. If it's about the same as the last few sessions, then we're going to take a break from feeding therapy for a while. She said that since Raya's no longer responding to motivators, she's not quite sure where to go from here and that a break might be the best thing for Raya. That was a little bit hard to hear. I know that she's not in any way saying that she's giving up on Raya, but we've never been told that before from any of her therapies and it feels like a huge setback. Disappointing and discouraging for sure. I agree that she probably needs a break though and maybe I do too. The girl has been getting feeding therapy since she was 5 months old. When you're only 2 years and 9 months, that's a REALLY long time.

Taking a break from therapy doesn't mean we're giving up or that Raya getting rid of the tube is hopeless. We all just need a chance to regroup. We will continue to work with the skills we've been taught and hopefully Raya will keep making progress with OT that will carry over into eating. Today is one of those days when I have to watch this video again to remind myself of where we started and how far we've come so that I can keep believing that we can go farther.


Untitled from Brandis G on Vimeo.

Monday, August 20, 2012

Weekend ramblings




This weekend was not the highlight of my mothering career. The kids ran amok the entire day on Saturday while I holed up in my office writing essays, a lab report and taking a quiz. (no, really, it was 12-ish hours of work. I stopped briefly to medicate, feed and put Raya to bed. I also had dozens of interruptions to the tune of, "Mommy, he won't give me my _________ (insert doll, toy, sandwich, bouncy ball, etc.)." and, "Um, is it time for snack/lunch/snack #2/snack #375/etc. yet?" and "You said we could do _____________ sometime. Can we go do it right now?" and my personal favorite, "I really REALLY want to do something fun. Is there anything FUN to do around here? (mommy lists off several 'fun' things) Well, none of those sound like fun. *sigh* I guess I'll just go play the DS/watch Netflix."

I also took a time out to drive the kids to their cousin's birthday party. Raya cried most of the way there (whilst clutching her floatie vest) because I told her she was coming home with me and not swimming with the big kids. She was quite the sight in her poofy, red with white polka dot Minnie Mouse dress-up on (inside out, by the way), sitting in her carseat crying and hugging her hot pink floatie vest. I was really at my wit's end that day (oh, did I mention that Donny had to work on Saturday??) so I was not up to doing anything or seeing anyone and had way too much work to do so I dropped them off at the curb and drove home with a crying Raya in the back seat. She stopped when I gave her a Chick-fil-a waffle fry though. (Did you know they fry their chicken in peanut oil? Is that even safe? Shouldn't they have signs posted everywhere that they use PEANUT oil??) When we got home, we sat down at the table to eat (because the only other thing I had eaten up to that point was a couple of bowls of cereal) and Raya ended up consuming an entire 1 oz container of Chick-fil-a sauce. Now don't get me wrong, I love Chick-fil-a sauce, but after watching the way she scooped it up and then slurped it off of her soggy waffle fry has really turned me off to it and it might be a while before I can bring myself to eat either of those things again.

She was acting funny that day. She's been complaining on & off recently that her tummy hurts. When a 2 year old says their tummy hurts, it's hard to know whether or not to believe them but when she tells me that and then grabs her G tube or puts her hand over the exact location of her stomach, it's hard to write it off as nothing. After we ate dinner, she wanted to lay on the couch and watch Backyardigans, which again set off alarm bells because she DID actually lay on the couch for about 90 minutes and just watched Backyardigans. Raya laying still for that long (anything over 30 seconds, really) when she's not in her crib is usually a sign that something's off with her. She was still a little funny yesterday but she seems fine today. Except that she's been a bit gun shy about swallowing anything since the peanut butter vomiting incident on Friday. I'm kind of dreading feeding therapy tomorrow because it didn't go well last Tuesday and I don't expect tomorrow to be any better. We shall see though.

She made an ENORMOUS mess with a box of cereal this morning. I don't suppose I have to elaborate on that. It was literally from one end of the house to the other, on the couches, under the couches, on the rug, and everywhere else. The rule in our house is that no food or drinks leave the kitchen, not even water. Raya hasn't gotten the memo, apparently.

Today we went to Build-A-Bear after school so that we could use the rest of the money that was donated and make a few more Tubie Friends for our local children's hospital. Tubie Friends is a fabulous organization (as is its sister organization, Mini Buddy). Tubie Friends & Mini Buddy put feeding tubes and other medical devices (trachs, ports, central lines, etc.) into stuffed animals and send them to kids free of charge to help them and their families cope. I started volunteering earlier this year as a "Tubie Friends Surgeon" and I absolutely LOVE it. Anyway, we had a little bit of money left over from a fundraiser earlier in the year so the kids and I decided to spend it. :) They love going to buy the bears and they never get upset about not getting to keep the bears we make because they know why we're doing it. Raya even understands that we're making bears for other kids and she loves to help. She always picks out the same bear that she has and calls them all Tubie-rina since that's her bear's name. :)

And yes, she's wearing one pink flip-flop that's too small and one purple zebra flip-flop that's almost too small. We can't find the match to either of them but they happen to be opposite feet so it works. Isn't her new backpack adorable? It's supposed to be a ladybug but the tubing is kind of in the way of the face. My friend Alex came across them at Target on Friday and it happens to be the perfect size for a Zevex Infinity pump and bag of formula. The best part was that unlike the boring backpack that came with her pump (to the tune of $100-ish) this backpack was only $15, AND it comes with a detachable leash, which is undoubtedly my favorite feature. Unfortunately, we drew the short straw today and the pump bag broke so about 7 ounces of vanilla Peptamen Jr poured out into her brand new backpack. I guess it was going to get "christened" at some point so it might as well be now, right?

Friday, August 17, 2012

Trying not to cry over vomited peanut butter

When Raya's big brother was little, he used to eat peanut butter & jelly sandwiches every day and waffles with peanut butter for breakfast. He only liked creamy peanut butter though and would vomit if he ate crunchy. For a long time we thought it was a texture issue but his pediatrician suggested having allergy testing done, although she didn't think it sounded like an allergy since he was okay with creamy peanut butter. I didn't take him to the allergist. Instead we just didn't feed him crunchy peanut butter and everything was fine. Then one evening I was making some celery with cashew butter on it and he asked for a bite. I gave him a bite and 10 minutes later he was leaning over the garbage can puking his little guts out. He vomited off & on all evening. A couple days later, I put a dab of the cashew butter on his cheek just to see what would happen. Within minutes, the whole side of his face had broken out in hives. I called the allergist that very moment and after waiting for what seemed like forEVER, he finally got in for testing. (it was worth the wait, we LOVE our allergists!) Low and behold, my boy turned out to be allergic to peanuts AND tree nuts, with cashew and hazelnut being his most severe. He was 3 when he was diagnosed.

Fast forward 4 years and we have this darling girl:
Who likes to wear the pirate pants from the dress-up box and sit on the counter to eat Cheerio dust early in the morning.

After we dropped the kids off at school this morning, we came home and I made the daring move of letting the girls watch Backyardigans on Netflix while I took a shower. When I came out, Raya had a handful of crunchy peanut butter so I put her in the high chair and gave her a little cup with more peanut butter in it. She's been eating PB for quite a while now and loves it, and it's about 95 calories per tablespoon so it's a nice high calorie food for her. While she was strapped in, I hurried to get a couple of things done and a few minutes later, Kaida came and told me that Raya had "water puked" on her shirt and the high chair tray. I thought she meant that Raya had spit up water because she's been doing that a lot lately but that wasn't what happened this time. I went in the kitchen and Raya had vomited peanut butter and water all down the front of her shirt and all over the high chair tray. My heart sank because that's exactly how it started with Cole. I had her spit out the rest of the peanut chunks that she had chewed up and was holding in her mouth and then gave her a drink of water and put some Benadryl in her G tube just to be on the safe side. Then I called the allergist's office and scheduled another round of allergy testing. Since I gave her Benadryl, we have to wait at least 10 days before testing her so she'll have it done at the end of the month. I may have shed a tear or two somewhere in between peeling off her vomit covered t-shirt and trying to wash the peanut butter off of her hands without letting her lick it off. We already had to take away her beloved sour cream because it started making her sick, and now we have to take away the only other calorie-dense food that she will always eat when it's offered to her. Sometimes life just isn't fair.

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