*ALL information on this website is the intellectual property of the blog/website owner! Unauthorized use is prohibited. If you see something you'd like to repost or share, please email me and ask first. This includes but is not limited to all text, information, and photos on the blog. Thank you!*


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

Thursday, October 31, 2013

IEP meeting

I told Donny on Sunday afternoon that I just wanted to go to bed and wake up in a week because of everything that was on the schedule for this week. It's been busy.

We had Raya's IEP meeting on Wednesday. For all the awful IEP stories I hear from friends, I am extremely grateful for how well it went. I can't say enough wonderful things about Raya's teacher this year. She has been so great about being careful to keep Raya safe with her food allergies and just from things she said in the meeting, I can tell that she is very aware of Raya's needs and is proactive in working on them. There are things that I would like to have seen written into her IEP but we weren't able to write goals for them because they didn't fit into the 3 areas that Raya qualified in. Even so, her teacher explained to me the things they do (or can do) to still incorporate those things into her preschool experience so they're still being worked on. She has also emailed me more than once to let me know about an activity she was planning for the class and make sure that whatever it was would be okay with Raya's allergies. Last night she emailed me the recipe for the play dough she's planning on making to make sure it was safe for her. See what I mean?! She's amazing! It's a good feeling to be able to take Raya to school and not worry about what she's being exposed to that she shouldn't be. The whole staff at her school this year has been great to work with. 

We came out of the meeting with some goals that I feel like are reasonable and will be good for Raya. It wasn't until after we left (meaning the last 2 days or so) that I've started to process more fully what her goals are and the fact that they do actually make me a little bit sad. I think IEP meetings (and others like that) are a little different for me than they are for a lot of my friends. Most of the time, I look at Raya and think, is all this therapy & preschool and avoidance of the majority of foods really necessary? Then inevitably, something will happen and I'll realize that we definitely are not wasting our time and she does need these things that we're doing with her. Sometimes it's seeing the way other kids her age interact with each other or watching other kids her age do certain things, and other times it's seeing a funky rash pop up on her face (or elsewhere) a few days after she's eaten a new food a few times. Whatever it is, I'm grateful for gentle reminders that I'm not crazy & I'm not making all this up or wasting my time.

One of those little moments came before our meeting even started. Raya's teacher and I were sitting down at the table in Raya's classroom. Her teacher asked her, "Raya, what would you like to do? You can play on the computer or play with toys." Raya just stood and stared at her with a smile on her face. We were in a room she's completely comfortable with, the question was coming from a person she's completely comfortable with, it was a POSITIVE question, she was in a good mood, she was not under duress or frustrated, and yet she would not or could not answer the question. The question was rephrased to her by a couple different people (including me) 3 or 4 times, with adequate time to respond in between, and she still said nothing. Eventually she went to the toys and started playing with the train set but she never actually verbalized what she wanted to do or responded to her teacher's question. 

I was a little frustrated when I was told that they couldn't really make that a goal, but we did agree that verbalizing her needs & wants is something she should be able to do at this point, especially in the area of adaptive/self-care skills. We were able to work it into a couple of her other goals by adding that she would initiate whatever the goals were. For example, one of her goals has to do with using the toilet at school and initiating asking her teacher if she can go. Currently, she would go all day without asking to go to the bathroom and if you ask her if she needs to go, she will tell you no 9 times out of 10. That goal might last us a while. :) Along the same lines, I also asked them to make a note that when it's snack time, Raya needs someone to prompt her to ask for help opening her water bottle or else she will not drink water. The speech therapist had said that she doesn't give the kids their snack & drink until they ask for it, and for a child who actually wants to eat & drink that may be fine, but I had to remind them again that they can NOT do that with Raya or she will just choose not to drink water. I'm not sure if that will end up in the IEP or not (probably not) but it needed to be said. I get the impression that the speech therapist has never worked with a child that has Raya's degree of feeding delays. Ever. Thankfully she asks me questions and seems to listen when I answer them.

Overall the meeting went well and I don't anticipate any surprises when I get my copy of the IEP in the mail. Fingers crossed that that's the case. My fear going into meetings like that is always that they're going to tell me she's doing great and they're kicking her out so as long as we've got things to write goals for that will keep her in the program, I'm happy. She loves school and for reasons that I can't always put into words, she NEEDS to be there, so I'm grateful that the program exists & that she has such a great teacher & staff to work with her.

She passed out in the car on the way home with her "cape" on that she insisted on wearing to the meeting. 
(then she woke up later all disoriented & had a huge meltdown)

Tuesday, October 29, 2013

The biggest meal of her life

Raya has had a good eating day today. I don't know what exactly has brought it on, but I hope it's her periactin (because who wants to be giving a kid medicine that's not doing anything for them). Since the first 3 weeks of it were pretty rough, I decided to do it at night this week. I gave it to her after she had been asleep for a couple hours last night to reduce the risk of her being awake all night (which has happened before with periactin) and she slept great. All of the kids actually slept until just after 7 this morning, which is unheard of, and they almost missed the bus. 

Since we were running so behind this morning and Raya was kind of in her own little world (another gift from periactin), and because I wanted to push the oral eating today, I didn't plug her into the pump first thing this morning like I usually do before preschool. (She's going to preschool at a friend's house on Tuesdays now.) Instead, I gave her a 2 ounce syringe bolus, which we pushed in slowly but she still said it made her stomach hurt. When I was confident that she wasn't going to throw up, we headed to preschool. She was going to take one of her muffins that I made her on Sunday but I opened the baggie this morning and found out that they already had a moldy smell to them. She decided to take her cupcakes instead and took enough to share with her friends at school. She was pretty excited about that.

After preschool I made us some potato chip-crusted tilapia like the allergist had suggested. I ate all but the 2 bites I was able to coerce her to eat. She wasn't game for it today but I might take some to feeding therapy on Friday. She did, however, down a good amount of potato chips for lunch and then topped off her tank with formula (from the pump, she didn't drink it). 

Raya cracks me up. I don't know if it was the periactin talking or if it was just her being her but for some reason, food was on her mind today. She saw a mesh bag with 3 orange bell peppers in it on the counter today and told me she really REALLY wanted to eat one. She said they were really pretty and that she LIKES them. I told her I would cut her a piece and she said that was okay as long as it was a BIG piece. I really didn't expect her to even take a bite but she did.
She sat with it in her mouth for a while and couldn't decide what to do with it. She had bitten almost all skin, which she sometimes has a hard time with, and the taste was probably not what she was expecting. 5 minutes later, she was still sitting with the bite in her mouth and still not sure what to do with it.
"Um, Mommy, I changed my mind. I don't really want to eat the bell pepper. Could I have some chips and jam?"

I was late getting dinner started tonight and decided to do breakfast for dinner. It wasn't as quick & easy as it sounds. We were out of pancake mix so I had to make them from scratch (and now we know not to use the Better Homes & Gardens pancake recipe...). I decided that since Raya can have pork and eggs, we would do bacon & eggs and I made her some coconut flour pancakes. Not gonna lie, I was pretty excited while I was cooking dinner tonight. I turned off her pump early so that she'd have room for at least a little bit of dinner. 

Can I just say how exciting it was for me to fix her a plate that had a version of the same food that everybody else was eating?! Who knew that the simple act of putting food on a plate could make a mom so happy. Most of the pancakes were pretty ugly but boy did they taste good. I made a whole batch and ate some of the regular pancakes and some of the coconut ones, and I preferred the coconut ones. (again, BH&G's pancake recipe is lousy...) In case anyone is looking for a good coconut pancake recipe, here's a good one:

It does use eggs so if you can't do egg, you could use a substitute like maybe flax+water. I'm actually trying to get more egg into her so that we can see if she's reacting to it or not so this recipe worked for me. :) Next time I will also either do a little bit more sweetener or a little less salt, or both. I don't know if it's all coconut flour or just the kind I got but it has a natural salty flavor to it.

What surprised me was that Raya was probably just as excited as I was about her plate full of food that was just like everybody else's.
I expected her to take a few bites and pick at everything but she blew me away with how much she ate. In the picture, there is one whole pancake on her plate. She ate that plus another half of a pancake. She also ate 2 1/2 pieces of bacon the same size as the one in the picture, a couple bites of egg, and drank about an ounce of coconut milk. (ok, well technically she ate 3 pieces of bacon but one of them was the end with more fat on it and she ended up gagging & had to spit out half of it) I couldn't believe how much she was eating and it took a lot of restraint not to tell her to stop. I did ask her a few times if her stomach was full and if her stomach hurt. She kept telling me she wasn't full and her stomach felt good so hopefully she was right. 

She really liked the pancakes but her favorite was the bacon. I cooked it so that it didn't have any chewy parts left since she has a much easier time with crunchy stuff. She even stole the piece I had saved for Donny.
The 2 near-vomiting incidents we had were both from bacon but she didn't care and kept right on eating it. It's a good thing she's used to me taking pictures of her while she eats. Poor kid thinks that's normal parental behavior. I just can't help it sometimes though!

Her "nigh-night medicine" took a little extra time to kick in tonight. I imagine it was because her stomach was full of food and it took longer to absorb. I'm excited and optimistic about tonight's meal but I'm not stupid. I put her to bed with a puke bag and put a towel on the floor next to her bed just in case dinner comes back to haunt us later. (in case the tarp that's under/around her bed isn't enough protection) I also texted that first picture to her feeding therapist who was also very excited. I think it's the first time I've texted her about food. If I had her GI doctor's cell number I'd text it to her too. :)

Do you like her cape? My very clever sister gave her that scarf for Christmas last year, along with some other fun things. She loves it because it has a smooth texture and it's always cold. Sometimes she calls it a blanket but this week, it's a cape. She's insisted on wearing it all day every day, usually on top of her backpack. I even let her wear it to preschool today. It makes me a little nervous having it around her neck so I tie it as loosely as I can and still have it stay on. The weather has been gorgeous this week so she's been playing outside a lot. Thanks to her cape, she's doing it in style.
She is full of mischief, that girl. I sure do love her!

Sunday, October 27, 2013

Grain-free, dairy-free baking with Raya

I've never been huge on baking with my kids. Kids are gross and I like my food to be free of germs and other child-related debris. That being said, I do like to do a little bit of baking here & there with one kid at a time. Raya has helped me a handful of times but she's usually either not interested or else I don't want her touching or being near the ingredients I'm using because of her food allergies. She and I stayed home from church today though and I decided it was a good time to do a test run of the recipe I'm hoping to use for her birthday cake. I've had a pinterest board for a while that's all recipes that would either work for Raya as-is or could be easily modified to work around her allergies. We picked out a muffin recipe and a cupcake recipe and got to work.

Props to whoever started the paleo diet craze. It's making it WAY easier for me to find recipes that work for Raya. Looking for gluten-free recipes doesn't always work since most gluten-free recipes have some form of rice or other grain flour in them and we don't have ANY grains that she can have right now. Paleo people like their coconut and that works for us. :) The muffin recipe we used is for a basic muffin made with coconut flour that can have different fruits & spices added to change the flavor of the muffins. We did applesauce since she can have apples. The recipe is from a website called Healthy Living How To (click link for original recipe).

Here is the original recipe, along with the changes I made. I also halved the recipe and made it in a mini muffin tin since Raya doesn't eat very much food at a time.

Basic Coconut Flour Muffin 
Base-Dry Ingredients
  • 1/4 C coconut flour {original called for a specific brand, I used the stuff from Sprouts' bulk section}
  • 1/2 C flaxseed meal {original called for a specific brand, I was out of flaxseed meal & had to grind some whole flaxseeds in the Magic Bullet & make my own}
  • 1 tsp baking powder
  • 1/8 tsp sea salt {Note: coconut flour has a naturally salty flavor to it so I either halve it or leave it out completely}
  • 1/8 tsp stevia extract powder {I don't have any so I used about 2-3 tsp of sugar but honey would be good too}
  • Spices (see options) {I used 1/2 tsp cinnamon}
Base- Wet Ingredients
  • 2 eggs
  • 2 Tbsp coconut oil, butter, or ghee, melted {I used coconut oil because of dairy allergy}
  •  1 tsp extract (see options) {I used vanilla extract}
  • 1/3 C water, coconut milk or almond milk {I used coconut milk since Raya's allergic to almonds and water seemed boring}
  • 1/4 C fruit puree (see options) {I used applesauce}
Options: {original recipe has several different versions, like banana muffins, pumpkin muffins, blueberry muffins, etc.}

Sift together dry ingredients in a medium bowl & set aside. Mix wet ingredients thoroughly in another bowl. Whisk dry ingredients into wet ingredients and mix well so there are no lumps. Spoon batter into prepared muffin tin. Full recipe makes 6 regular sized muffins; half recipe makes about 9 mini muffins. Bake at 350 for 23 minutes for regular sized muffins and for about 12-14 minutes for mini muffins.

Here is my little baking buddy with her pan of muffin batter, ready for the oven.
(She gets to wear whatever she wants to on days when we don't leave the house.)

The funny thing about a lot of grain-free recipes is that they don't bake up quite the same way that "normal" baked goods do so they usually come out of the pan looking exactly like they did when they went in. The muffins pretty much looked like dry lumps of batter when they were done. I was feeling pretty excited & festive when I pulled them out of the oven so I dug out a fancy plate from the cupboard and gave her a muffin.
She liked it! Probably because when I asked her what it tasted like, she said potato chips. She would eat anything that tasted like potato chips. She ended up eating the whole thing, along with several of the larger chunks of ice in her cup. Girlfriend loves her ice. :) This week, she'll be having muffins for snack at school instead of beans and baked potato. :) The only thing I have left to do now is to plug the recipe in to a website that calculates nutrition information so I know how many calories the muffin was worth & all that other good stuff.

When we finished with the muffins, we got started on the cupcakes. The recipe we used is from sweet + natural and is called Mini Chocolate Cupcakes + Chocolate Peppermint Frosting. I'm not posting the whole recipe here because the only changes I made on the were that I didn't have any agave nectar so I subbed 1/3 C honey for the 1/2 C agave nectar and I used coconut oil instead of vegetable oil. I also just used a pinch of salt instead of the 1/4 tsp called for in the recipe because like I mentioned before, coconut flour tends to give a salty flavor to baked goods and I wanted the cupcakes to taste sweet like cupcakes. The recipe says it makes 16 mini cupcakes but my mini muffin tin only holds 12 so ours were probably a little bigger than the ones in the original recipe since I just crammed all the batter into the 12. :)

I also halved the frosting recipe since this was just a trial run for her birthday and I didn't really want a huge batch of frosting sitting around for me to eat by the spoonful. Not that I would do that... The only changes I made (on purpose) from the original were leaving out the peppermint extract and using vanilla coconut milk instead of soy milk since we had vanilla coconut milk in the fridge (and I'm sort of anti-soy milk...). I made some accidental changes like accidentally pouring too much powdered sugar in and forgetting to halve the amount of cocoa powder, and then having to compensate by adding a little extra coconut milk, but it worked. The frosting turned out to be DELICIOUS! Here are some crummy cell phone pictures from our grain-free/dairy-free cupcake baking adventures.

Pure joy ♥
The muffins are pretty sad looking but look at those GORGEOUS chocolate cupcakes!
After I explained to her what a beater was and that she was supposed to lick the frosting off of it, we had a moment of mother-daughter beater-licking bonding. Never done that before with this kid!
She started out just licking the frosting off so I had to show her how to bite the cupcake AND frosting at the same time, bless her little heart. I guess if you've never had a cupcake before you wouldn't know that. She still prefers and has an easier time with having one texture in her mouth at a time so it's really different for her to bite both the cupcake and the frosting together.

The cupcakes are much more moist and have a more normal texture than the muffins. Probably because there are 3 eggs in the cupcakes and no flaxseed, which gave the muffins a more whole grain-ish texture & taste. I am totally impressed with these cupcakes. They are really tasty, with and without the frosting. (but really, who eats cupcakes without frosting...)
She may have just been a little full from her muffin and formula but she didn't finish the cupcake. She did lick every last speck of frosting off of it though and I suspect she'll eat the cupcake later when there's room in her stomach for it. Overall, both recipes were a huge success and I'm breathing a sigh of relief that we now have a Raya-friendly birthday cake recipe!

Thursday, October 24, 2013


What, you mean your 3 year old doesn't ask for potato chips and jam for breakfast??

Tuesday, October 22, 2013

I need to release some word vomit.

It's been a day, and this is going to be very, very long and I really don't expect anyone to read it unless you're wondering what it's like inside the mind of a "tubie mama" on a stressed out day. Actually it more or less started last night when I was driving to the grocery store. I was already tired, it was after 9pm, and I was thinking about what I needed to talk to Raya's GI doctor about at the appointment this afternoon. Next thing I know, I'm bawling in the car and trying to compose myself so I can go in the store without looking like a crazy person. Most of the time I think I do a pretty darn good job of being positive. I know I could be working harder on...well pretty much everything, actually, but I think as far as Raya's medical stuff goes, I do the best I can with where she is at as far as food and her stomach go. I can remember what her worst times were like and I know how very far ahead of those times we are now, and that usually makes it pretty easy to stay positive. But.

Right now I'm incredibly frustrated. For a year now, she has been stuck. A year ago this month, she had a huge backslide and went from getting her bolus feeds of 250ml each (8.5 oz) in about 25 minutes at the maximum pump rate of 600ml per hour to not being able to handle that same amount in anything less than 2 hours (rate of 125ml/hour). Here we are a year later and she is still at 125ml/hour. I've tried a few times in the last year to increase her pump rate. She does okay for a little while (sometimes a day, sometimes a few days) but inevitably she starts to seem "off" and we go back to 125 and she's fine again. We even see it when she eats solid food. I thought it was so funny (but not necessarily in a ha-ha way, more in a how interesting way) that when she would drink a full box of Splash, which is also about 8 ounces, there were a couple times when she drank the whole box in about half an hour or less and then puked. When she wasn't being pushed to drink it that fast and could go at her comfort level, she "grazed" on it and finished it over the space of 2 hours. Coincidence? Probably not. Clearly, that's a rate that she feels comfortable at, gosh dang it. Does YOUR kid need to take 2 hours to drink 8 ounces of liquid?? This is the part that frustrates me and makes me stress a little about how her future is going to look.

Since the day she got her first NG tube at 10 weeks old, people have asked me if this was something she would eventually grow out of. It's a fair question and I completely understand why people ask, and I have never faulted anyone for asking. I'm sure if the tables were turned, I would be asking too. That being said, that question has brought me so much frustration and even anger and sadness at times for 2 reasons. (not at all directed at whoever is asking though, I promise) One, we have never been able to really nail down what "this" even IS so we have no idea what to expect. We can speculate that yes, she will eventually be able to eat & drink enough to not need the feeding tube anymore, but nobody has any idea when or how that will happen. The other reason that question stings is because the phrase "grow out of" implies that she will just one day be all fixed and magically be "over it". The hundreds of hours we've spent at therapy appointments, doctor appointments, and the thousands of miles we've put on the car & the money we've paid in insurance premiums & medical expenses are pretty sufficient evidence that there will be no magical "growing out of it" happening here. Not one single step of this has come without a huge amount of effort on the parts of everyone involved.

With the slow expansion we've been doing of Raya's diet, I have once again been smacked in the face by how unnatural it is for a child who is almost 4 years old to still be learning to eat. Every single bite for her is a process. When I want to eat lunch, I decide what to eat, make myself some lunch, and sit down at the table with my food, a glass of ice water and something to read, and then I eat it. I take drinks of water after every few bites and I'm usually finished in about 15 or 20 minutes. That's about all the thought that goes into it. For me, the hardest part is deciding what to eat.

Now let me explain Raya's eating process. First of all, she usually doesn't ask to eat a meal, and especially not lunch. Most of the time, she is happiest and feels the best when her stomach is empty. She asks for snacks once or twice a day and if everybody else is having dinner, she is now to the point where she expects to have a plate at the table too but most of the time would be pleased as punch to just eat a few chips or a cup of ice for dinner. Lunch for Raya usually starts with me telling her that it's time for lunch and giving her 2 options for what to eat. That is followed by her either dodging the question or telling me she doesn't want potatoes or peaches, she wants potato chips. Eventually she gives in and decides she wants potatoes. While I cook her a baked potato in the microwave, she gets crushed ice and water in a cup, picks out what plate she wants to eat off of, gets herself a fork, and plays musical chairs at the table since nobody else is home & she can pick whatever chair she wants. I bring her plate to the table and start to peel and cut up her potato. She gets upset and tells me she LIKES potato peels now and wants me to leave them on so I leave them on. I give her the plate. She wiggles in her chair, talks to herself, plays with the fork, eats a chunk of crushed ice, and finally takes a bite of potato but uses her fingers instead of the fork that she insisted on picking out and getting by herself. After she chews and swallows that bite, she starts playing around again. I tell her to take another bite. (telling is the only thing that works, you can't ask her if she's ready for another bite or she won't do it) She finds all kinds of ways to distract herself and usually only takes one or two bites before she needs to be told again to take another one. Then I remind her to take a drink of water but I also have to remind her to drink it slow or she will choke on the water about half of the time. After about 5 bites, she starts picking the peels off of the potatoes. (remember, the peels that she insisted that I leave on?) Then she needs to wipe her hands on something because she has too much potato on her fingers. Then I poke a piece of potato with the fork and hand it to her. That's usually followed by her pulling that bite off of the fork and poking a different piece of potato with the fork and eating it, because heaven forbid she eats the bite that I gave her. This process continues until I can see that she's slowing down (ha ha, yes, it can actually get slower than that) and/or that she's starting to look uncomfortable. There is a definite change in body language when she gets to her limit. 45 minutes after we started, she has eaten 1/3 to 1/2 of the potato (either a small russet or a medium sized red potato) for a total of about 50 calories. After that, she's too full to eat any more and 45 minutes is a LOOOOOOONG time for her (and me) to sit at the table and eat.

Now that was just for something easy to eat like a potato. It's soft and easy to chew and although it makes you thirsty, it's not particularly difficult to eat. She LIKES potato, but that's still the process she goes through to eat it. When we give her something new or something that's physically more challenging to eat, things get harder. For example, a few weeks ago we introduced pork loin. It was sliced very thin and lightly seasoned with salt and then cooked in a frying pan until it was done but still tender and juicy. I thought it was delicious and as far as meat goes, it was very soft & easy to chew. Of course I'm USED to chewing meat but Raya is not. For her, the amount of effort it took to chew each bite enough to swallow it quickly outweighed any positive feeling or enjoyment that she got out of eating it. For a child like Raya, as soon as eating gets difficult, it's no longer worth the effort and they quit. She didn't dislike pork, but she lost interest in it very quickly because of how much more work it took to eat it. The other thing that was difficult for her and kind of eye-opening for me was that she had a hard time understanding when the piece of meat had been chewed enough for her to swallow it. Sometimes she would chew a bite a couple times and then swallow it. Other times you'd have thought she was chomping on a piece of gum for how long she kept chewing on it. As difficult as it is for me to try and figure out how to get her to eat more, and to eat things more efficiently, I can only imagine how difficult and confusing and foreign the whole process must be for her. Nothing comes automatically to her because she is beyond the age where that is an instinctual part of the developmental process, so every single bite takes a conscious thought process. I can't even fathom how a 3 year old accomplishes that process. As she practices, I do see some bites becoming effortless and automatic, and I'm grateful for that, but those are much fewer and farther between than the conscious effort bites, and especially when it's something that she doesn't totally love or that is new to her.

And with Raya, if it's not one thing it's another. What I did not mention in the previous examples was that before we can get her to eat that much food (half of a potato), we have to wait about 2 hours after she's finished a formula feed. After she eats, we have to wait at least another 2-3 hours and sometimes longer before we start the next formula feed or else it hurts her stomach and makes her feel sick. To put it into other terms, if all she's getting is formula with no solid food, then she gets about 500 calories over the space of 8 hours. The example I just gave would mean that in that same 8 hour time frame, she's getting about half that because we have to give her time to get hungry enough to eat the potato and then give her time to digest it before we start filling her up with formula. That makes it difficult to get all of her calories in for the day. We've been off of overnight feeds for quite a while now, but on days where we give her more time in between pump feeds to try and increase what she's eating by mouth, we end up running the pump until the wee hours of the morning. I prefer not to feed her all night long because let's face it, digesting in your sleep is not normal or natural. Necessary sometimes, yes, but having to feed her at night is pretty much another step backwards. So the slow motility definitely works against us in the game of oral eating.

The other giant brick wall we keep hitting is food allergies, intolerances, and sensitivities. (yes, those are 3 different things) She has several foods that she is just flat out allergic to that elicit immune system responses and a couple could potentially cause anaphylaxis. There are other foods that she is intolerant to, and those elicit digestive system responses (i.e. abdominal pain and diarrhea that causes blistering skin rashes). Then there are other foods that she is sensitive to, that she doesn't have immediate reactions to but chronic ingestion over time leads to symptoms like skin problems, abdominal discomfort, dark circles under her eyes, a change in her disposition, and more subtle things like that. Trying to find foods that she can eat is a challenge. Trying to find foods that she WILL eat is a whole other challenge, and trying to find foods that she can and will eat that have a decent amount of nutrition in the amount she'll eat of them...well you get my point. Not one single aspect of feeding Raya is simple, natural or effortless and there certainly won't be any magical "growing out of it" happening. Like I said, I completely understand what people mean when they ask that question and it doesn't offend me, but the real honest answer to that question is just beyond most people's realm of understanding. It's unfathomable to most people that a child would just flat out not be able to eat, not know how to eat, and not care if they ever ate anything at all but that is the reality for Raya and so many others.

Raya had a make-up session of feeding therapy today since she was sick on Friday & we had to cancel. Since it wasn't our regularly scheduled time, we had to use a different room than we normally do, which seemed to affect her ability to focus. The chair was just a regular child-sized chair rather than the chair she usually sits in at therapy that has straps & buckles on it. That meant she was free to wiggle as much as she pleased, scoot her bum to the edge of the chair, move the chair around, etc. It was also the first day of Raya's periactin week. She was in rare form all day long (not necessarily in a good way), and although she wasn't crabby for most of the day like other periactin days and she didn't sleep all day long like last week, she was not herself either. She acted so silly all through therapy and had ZERO attention span. She also didn't seem hungry at therapy in spite of having plenty of time between her morning feed and her therapy appointment. I think there were more verbal cues tossed around in that feeding therapy session that we've EVER had to use in one session before. When all was said & done, she had eaten about 60 calories' worth of potato and about a teaspoon or two of whole black beans, which was probably a dozen beans. 50 minutes of work for a lousy 50-ish calories. (negative, perhaps, but today I'm not feeling like my usual "glass half full" self) Even her therapist made several comments throughout the session about how "off" she was acting. She's still feeling a little under the weather and it wasn't her normal appointment time, so I think part of the behavior was an effort to stay awake but yeah, I hope it was a one time deal because I just don't have the energy for that every time she eats.

The one funny thing that came out of feeding therapy was that at some point when I wasn't looking, she took the cap from my water bottle, put a bean in it, and put it in front of her stuffed lamb on the table. I got a good laugh out of that.

While I was sitting in feeding therapy, my phone rang. I never answer the phone during appointments but the number that popped up was the GI doctor's office, and we were supposed to be seeing them half an hour later so I figured it was probably something important and answered it. Turns out that somebody made kind of a dumb scheduling mistake and didn't catch it until 30 minutes before our appointment. There was a family with 3 kids that were all seeing our GI but somehow Raya got scheduled in between 2 of them. My guess is that Raya was scheduled first and those kids got filled in around her. They wanted us to come at 3 instead of 2 so that the family could be seen all at the same time. It was completely understandable and wasn't a huge inconvenience for me but it was kind of annoying that nobody bothered to notice that or call me sooner. I had scheduled feeding therapy at 1 because the clinics are about a mile apart so it was very convenient. Or it would have been, anyway. Instead of leaving FT early like we had planned, we finished out the whole appointment time and then went to the pharmacy a couple miles away to pick up a prescription, and then headed back to the GI office. Picking up the prescription took all of 15 minutes so we still had 45 minutes to kill. Raya had fallen asleep in the car on the way to the pharmacy so I just parked in the shade of a tree at the GI office and we sat in the car until about 20 minutes before the appointment.

As we were sitting there, I suddenly wondered if the back office MA that had called me had thought to mention to the front office staff that they had swapped us with the person after us. Of course she had not, so when I did the automated check-in kiosk, it told me to report to the front desk because we were more than 10 minutes late. The lady at the desk called us up right away and started to say, "Ma'am, do you realize you're 40 minutes late?" but I quickly cut her off and said, "Let me guess, they didn't bother to tell you that they called me an hour ago and asked me to come at 3 instead of 2, did they." I explained what they had said when they called about the family's schedule being split up and of course she had to go ask if that was really the case or not but got us checked in and we sat down. At that point, Raya was still sound asleep so I was enjoying some cuddle time, especially after having just sat through an exhausting feeding therapy session and been bored out of my mind for an extra hour between appointments.

She was still asleep when the MA called us back. He was new and it showed and we'll just leave it at that. I handed him the med list so he could copy it into the chart and by then she was awake enough to go get weighed & measured. By the time I had her changed into a gown, she was WIDE awake and feeling bright eyed & bushy tailed and I ended up having to hold her hand for the 20 foot walk from the exam room to the scale in order to keep her from running off in some other direction. (she thinks she owns the place) I was happy to see that since her last appointment 6 weeks ago, she has gained 0.4kg and is now up to 15.0kg (33 lbs 1.1 oz) and is 39.05" tall. That puts her in the 36th percentile for weight and the 38th for height and for our family, that's pretty darn good. I was just glad to see that she gained weight this time because she had gone pretty much from May to September without gaining an ounce. We've been monitoring her calories more closely though and she's been on the pump more and it's doing the trick.

There are some GI appointments where I leave afterward feeling great and others where it's all I can do to get out to the car before the tears start falling, and today was one of the hard days. It wasn't anybody's fault, it's just a very frustrating situation. For several months now, we have been talking about the fact that Raya just isn't making any progress with motility or reflux. The reflux meds she gets keep her symptoms at bay, but I don't love that she's been on high doses of PPIs her whole life and that we have seen that she is not able to function well when we take her off of them. There is no light at the end of the reflux tunnel right now, and that stinks. (and lest anyone is tempted, this is NOT the day to tell me about the home remedy or essential oil that will cure her reflux...) The subject of a fundoplication surgery has come up several times since she was very little but her GI doctor, surgeon and I all agree that she is not a good candidate for a fundo because of her history of retching/vomiting and because of her ongoing gastric dysmotility. A child with gastroparesis or delayed gastric emptying is not a good candidate for a fundo because when the stomach doesn't empty properly but the fundo takes away the ability to vomit, the stomach becomes like a pressure cooker and the child is miserable. We don't feel like it's worth that risk for Raya because she is not having problems with aspiration pneumonia, which would be the only reason we would ever consider a fundo for her. So that means the PPIs are here to stay.

Issue #2 is the gastroparesis. As my friend & Feeding Tube Awareness colleague, Traci, likes to put it, motility meds are piss poor at best. There are really not any meds that have the primary purpose of treating dysmotility. The meds that are used for dysmotility are pretty much all meds that are intended for other things but CAN have an effect on motility. We have tried 3 different ones and really didn't see any results with any of them. Pyloric botox injections would give her a good shot at having a more normal rate of gastric emptying by relaxing the muscle that controls the rate at which food leaves the stomach, but we either have to convince either or both of her insurance companies that it would be worth the expense or pay the $1200 out of pocket ourselves. Financially, it makes more sense for an insurance company to pay for pyloric botox that could potentially help her make good strides towards getting off of the feeding tube, which would benefit the insurance company in the long run. The alternative is surgery, which would also be more expensive than botox and could have potential side effects that would increase her dependency on the feeding tube, which would cost the insurance company more money than they're currently paying. Unfortunately, the people who make decisions about things like my daughter getting botox or not are not medical professionals, believe it or not. They are businesspeople who, as a board, discuss cases like this and decide whether or not they have merit, and if they do, THEN they go before a medical professional (either an RN or doctor, not sure which) to have a decision made about whether the insurance will cover it or not. It is ludicrous if you ask me. These people have no idea what this one simple procedure could mean for Raya, nor do they care enough to even give her GI doctor, who could adequately explain it to them, a chance to plead our case. It infuriates me but I don't even know who to argue with about it. Her doctor & nurse are still trying to push forward with getting it authorized though. Her doctor is also consulting with a motility specialist in Boston because she thinks that there's a possibility that if we had it done at an actual motility center, the insurance would possibly not look at it as "experimental/investigational" since the motility center specializes in procedures like that for that purpose. Still a big question mark as to whether or not it will ever happen though.

I also brought up the pyloroplasty option again. Deep down, I know we shouldn't jump into that just because the botox was a dead end, but I am just so tired of trying to be patient and wait for her body to magically start working right and I want to DO something. We KNOW that a pyloroplasty would increase her gastric emptying. The problem is that there's a good chance it could increase it too much and cause dumping syndrome and other complications, and the procedure is not reversible. Right now, it's too big of a risk to take without repeating motility testing and trying botox first. (i.e. the motility testing we had to wait months and fly across the country to do 3 years ago and the botox that insurance has refused to cover thus far) See why I feel like we're running in circles and getting NOWHERE?! At one point, her doctor looked at me and said as nicely as she could, "You know there's not going to be a magic fix for this." And I know. I think I've known that since about the time that I finally resigned myself to the fact that it was time to get rid of the "temporary" NG tube and switch to a G tube. It still feels like a kick to the gut to hear it though. It also felt like a little bit of a kick to the gut to hear her say that we need to increase Raya's caloric intake again. Without having been able to increase her feed rate in the past year, adding more calories just means more time on the pump. Now that we're trying to push oral eating, that means more time on the pump at night, which feels like a step backwards. The feeling I had when she said that reminded me of how I used to feel when I was running high school cross country and we'd go run at the butte outside of town. There was this one hill in particular that we would run up. You'd run until your lungs felt like they were going to explode and your legs felt like lead and then you could see the top and it gave you enough of a surge of energy that you felt like you might actually make it. Then you got a few steps away from what you thought was the top only to realize that there was more hill to climb beyond that, you just hadn't been able to see it before. Or like the orphans on Annie when they get all excited that they've found #1 5th Avenue and then remember that they have to get to 967.

Well anyway, the appointment was not my favorite one we've had. Nothing that we discussed or that I heard her say today was anything that I didn't already know, but sometimes hearing what you already know sucks. For now, the plan is to keep her meds the way they are but start weaning her off of the zantac when I feel like she's ready, increase her calorie goal to 1100-1200 calories a day, and come back in 2 months. In the mean time, she's going to contact the doctor at Boston again, as well as the one we saw 3 years ago at Nationwide (who I hear is now in such high demand that he's scheduling out 1 year in advance for motility testing) and see if they have any thoughts or suggestions.

Issue #3 is food allergies/intolerances/sensitivities. We saw the allergist on Monday and that appointment actually went pretty well except that I forgot to ask for a new Rx for her Epi-Pens. We discussed what foods to add into her diet, especially in the way of protein sources that won't sit in her stomach for hours after she eats them like the beans do. His suggestions (in addition to the salmon we just tried last week) were tilapia & other white fish, and home ground pork. (buying ground pork increases the risk of cross contamination with chicken, which she's allergic to, and beef, which we don't know if she's allergic to or not) I think both of those are good suggestions & we'll definitely try them. We also talked about grains and the plan going forward is to try quinoa again, as well as millet. He said we could also try tapioca again and since she tested negative for soy allergy, we can attempt soy too. That would definitely give us some options. We're also starting on some winter squash now. We'll see him back in 6 months unless something comes up in the mean time.

That's pretty much the rundown of where we are right now. Treading water, and trying to move forward without falling backward. Hopefully now that I've gotten all my word vomit out, I can go back to being my usual mostly optimistic self and be content with what we have to work with because I'm tired of feeling frustrated. The end.

Sunday, October 20, 2013

Updates from the week

It's been a whole week since I updated and there is much to tell. I should start by finishing the story from last Sunday night. Saturday night, she had woken up late at night with a fever and wanting her stomach drained. The fever only lasted a couple hours and she seemed fine Sunday morning so I wasn't sure what to make of it but thought maybe it was some strange allergic reaction to the cheese she had gotten into the day before.

Sunday evening, she went to bed and seemed fine. She had eaten a little less than half of a peach at dinner and seemed pretty normal all evening. She came charging down the hallway dragging her usual armload of stuff (2 blankets, a few stuffed animals, feeding pump backpack, etc.) with a frown on her squinty-eyed face and I could tell she didn't feel great. She climbed up on the couch and I asked her if her stomach hurt. She said yes so I asked if she wanted it drained again and she said yes. I plugged in a Farrell bag and got maybe an ounce of formula, so it didn't really help much. I hung the Farrell on the IV pole just to give her some venting. She had a fever again. She fell asleep so I went in the other room to finish what I had been working on and then I heard her puking. (just like old times...) As much as I hated the carpet in the living room of our house that we lived in back in her frequent vomiting days, I have to admit that it was much easier to clean puke out of. I was not a fan of picking chunks of undigested peaches out of the fluffy shag carpet that we have in this house. I love the carpet but it's really not puke-friendly. I cleaned everything up, threw a towel down on the couch and the floor next to the couch, gave her one of her favorite blue puke bags, and started running Pedialyte into her. I swear, running Pedialyte into a sick kid like that makes such a huge difference in how their body fights off the virus. (which is why stomach bugs always make me wish my other kids had G tubes)

I started a load of laundry and finally got her settled in on the couch around midnight and started a long night of sharing a couch with a girl who is getting too big to share a couch with but who I didn't dare leave there by herself. Somehow the kids always end up with the big couch.

She felt a lot better on Monday, as demonstrated by this lovely picture:
but just to be on the safe side, I fed her half formula & half pedialyte for the day. The kids had been off on fall break the week before and they had Monday off too. It was a very long day full of children fighting with each other. We did play at the park for a while though since the weather was nice. Tuesday was the blessed day that the older kids went back to school. Raya and I stayed home all day and I canned some chicken and repeated the same answers to the following 2 questions repeatedly all day long:
Raya: What day is it?
Me: Tuesday
Raya: Is Courtney coming? {respite provider}
Me: No, but she'll be here tomorrow.
(followed by pouty face from Raya)

 She got pretty crabby about the fact that we had run out of potato chips (holy schmoly, how did I forget to buy chips??) but I pacified her by making her some coconut milk ice cream in the Vitamix. She was a big fan. It was tasty, I have to say. I think it might have a better texture with the canned coconut milk than the refrigerated "healthy" stuff that I used but it still worked just fine.

 She ate the whole bowl, which thanks to the low-calorie refrigerated coconut milk probably had about 20 calories but whatever, it made her happy.

She seemed like she was completely over whatever she'd had by Tuesday and she was very much ready to go back to school on Wednesday. I had given her an extra day off of her Periactin so she didn't start it on Tuesday like she had the week before. I gave her the first dose of the week on Wednesday before school. When I dropped her off, I warned her teacher that she was on a new med and could be a bit grumpy or drowsy. What I did not expect, however, was to go back to pick her up at 11:00 and find that she had been asleep since 9:45. They said she fell asleep at the table while they were eating their snack, opened her eyes a little when they went back to their classroom, but then was out cold again and stayed that way the rest of the time she was there. They had her laying on a nap mat in the back of the classroom. When I was walking in, I heard one of her little classmates tell his mom, "Raya's asleep!" And sure enough, she was completely and totally out.
I signed her out and then stood and stared at her for a minute, trying to figure out how I was going to pick her up and carry her and both of her backpacks ALLLLLLLL the way out to the car. I thought she'd wake up when I picked her up but she didn't. I thought she'd wake up when I started to buckle her into her carseat (since she insists on doing that herself most of the time) but she didn't. I thought she'd wake up on the drive home but she didn't.
(don't worry, I took this while I was stopped at a red light and clearly, I was not looking when I took it) I thought she'd wake up when I got her out of the car but she didn't.

I thought for SURE she'd wake up when I took her shoes off of her and laid her on the couch, but she stayed asleep. She slept, and slept, and slept. Her respite provider came at 11:30 and Raya was asleep still. I ran some errands and when I got back, she was STILL asleep. The big kids got out of school early for parent teacher conferences and when they got home around 1:15, she was STILLLLLL asleep.

 I couldn't believe she was sleeping for so long. I started to worry that something was wrong with her or that I had accidentally overdosed her (even thought I had double checked the dose before I gave it to her and made sure it was right). Finally at about 2:00, she woke up. She was bummed that she only had half an hour to play with her respite provider but I was glad she had gotten such a good nap.

Unfortunately when she woke up, I could tell that she was probably coming down with something else. She sounded a little congested and coughed a few times here and there. That night, she started to sound pretty croupy and she stayed that way all weekend. Aside from having to drag her along to parent teacher conferences on Thursday, we laid low the rest of the week and didn't go anywhere. She had a rough night Thursday night (meaning she and I BOTH had a rough night) so I texted her therapists Friday morning and canceled her appointments and emailed her teacher to let her know Raya wouldn't be at school that day and we laid on the couch all morning. Well, after I gave her a bath and stripped all the bedding off of my bed and cleaned the pee off the floor next to my bed. She had gotten in bed with us and yes, she had a diaper on but she was getting extra fluids all night and yeah, diapers can only hold so much. She slid off my bed that morning and peed and it all just came dribbling out of the diaper onto the pillow that was on the floor. TMI, totally gross, but yeah, that's life. :) She had a nice bath and snuggled up on the couch to watch some PBS shows on Netflix while I took a nap. (which was interrupted every 20 minutes when she'd ask for another episode)

It felt nice to have the day off but we'll be making up for it this week with several extra appointments, including GI. I'm hoping they've either made progress on the auth they were trying to get or else will agree to go the other route that we've been talking about but we'll see on Tuesday.

She's still been a little croupy-sounding at night the last couple of nights but she's running around like her normal self (not that that's a very good indicator of whether or not she's sick...) and she says she feels good. The kids all played outside for a while this afternoon while I made dinner. She was acting silly all the way through dinner (in an aggravating way, not in a cute way) but we did get her to eat half of a medium-ish red potato and about a teaspoon of whole black beans. Her total for the day today was about 240 calories. Pretty good, especially since I forgot to give her Periactin this morning. The virus she's had this week kind of kept her from wanting to eat so even with Periactin on board, she hasn't eaten much all week. I thought about not giving it to her this week since she was sick but I decided to do it anyway just to keep things consistent. The fact that it's an antihistamine was kind of an added bonus that I figured she might as well have. Today and tomorrow will be her days off and she'll start again on Tuesday just in time for her busy day of 3 appointments, which should be super fun. I told her teacher we wouldn't start a Periactin cycle on a school day again since it seems to hit her harder on the first day (as evidenced by the 4 1/2 hour nap on Wednesday) so we'll start Tuesday instead. I'm still not willing to risk the insomnia that it gave her before when we gave it to her at night!

After dinner, everybody got showers and Daddy trimmed nails. She wanted to do it like the big kids so they started out like this:
but they only got through a toe or two before they switched to something she could handle a bit better (and thankfully Daddy has good aim and didn't cut off anything important while she was wiggling around trying to balance! :)

Now it's time to go see if she's finished digesting her dinner and plug her in for her night feeds!

Sunday, October 13, 2013

A new calorie record

So this is very exciting but it comes with a disclaimer: Raya is not "cured" and this probably won't be a consistent thing. (Not trying to be cynical, just going off of previous experience.)

Raya has broken her all-time record for oral calorie intake twice this week, probably because of the help of Periactin. On Friday, she ate a whopping 440 calories, which blew her previous record of 310 out of the water. The 310 calorie day was in January 2012, and she had 3 days in a row of 300 calories, also with the help of Periactin. Then she caught a cold that turned into a sinus infection and she didn't eat a single crumb of anything for a whole month, and had not ever hit 300 calories in a day again since then. Up until this week, her max has been about 260 with her average being about 160 (which is her daily oral calorie goal) so obviously, 440 is a big deal. And what did her 440 calories consist of? Here's the breakdown:

1/2 of a HUGE peach at feeding therapy=31 calories
3/4 of a medium red potato at feeding therapy=82 calories
1/2 of a HUGE pear=87 calories
1 1/2 servings of Wavy Lays potato chips=240 calories

Am I thrilled about the fact that more than half of those calories came from potato chips? No. But sometimes you can't be too picky when all you're doing is trying to convince your non-eating child to eat. I did cut her of at 1 1/2 servings and she didn't eat all of those chips at once.

I was pretty darn excited when I counted up the calories. Well, actually, I had to count and recount them 3 or 4 times to make sure I wasn't screwing something up because I had a hard time believing that she had actually eaten that many calories. I knew it was a lot of food (relatively speaking) but the healthy, single ingredient foods she eats never add up to very many calories so it seemed high. Once I realized my total was right, THEN I got excited. To be fair, I know that part of the reason she ate so many calories by mouth that day was because I did not give her formula at all until about 3:00 in the afternoon. Normally she's had 500 calories' worth of formula by then and fits food in during the breaks between feeds. I would imagine that the combination of an appetite stimulant plus not getting any formula probably helped with the food intake. The sad part was that once again, we were able to see that she seems to feel a lot better when we don't feed her than she does when we do feed her. I hope that we will get to a point where she has enough foods in her diet that we can do a partially blenderized diet for her, and maybe her body would tolerate that better than the formula she depends on now (which I have no problem with and am grateful that we have it).

Saturday turned out to be a really good eating day too. For breakfast, she ate another 160 calories' worth of potato chips. Throughout the day, she also ate 1/2 of another huge pear, some French fries (baked at home, not from a restaurant), and she drank 1/2 of a box of Splash. Grand total for Saturday: 477 calories. I'm still a little in disbelief. Again, I'm not thrilled that the bulk of her calories came from potato chips and French fries but the point is that she ate a good amount of food each time we offered her food. I also started feeding her with the pump at about noon so she didn't go as long without formula yesterday.

I wish I could say the story ends there but it doesn't. (I feel like I'm always sandwiching good news with bad...) Everything was great until about 11:00 last night when she came noisily down the hallway with her 2 blankets, a couple of stuffed animals, and dragging her pump backpack, and plopped down on the couch next to me. I thought she felt a little warm but figured it was because of the fleece pajama pants she was wearing. It didn't take long to realize that she didn't feel good though, and she had a fever of 101. I asked her if she didn't feel good and she shook her head yes. I asked her what part of her didn't feel good and she didn't answer, so I asked her if her tummy hurt and she shook her head yes. When I know her stomach hurts late at night like that, I'll offer to drain it for her and she sometimes tells me yes but usually she says no. This time she shook her head yes and said yes, so I had Donny get a bag to drain her with. I wasn't sure we'd get other than formula but it didn't look like there was any food so that was good. There was a LOT of air. I really don't know how she had so much air in her stomach but getting that out HAD to have felt good. I also got out pretty much the exact amount of formula that she had been fed by the pump for a little over an hour that it had been running. That was better than what I expected to see but still not great when you consider that some of that formula should have emptied out of her stomach by the time an hour had passed. We didn't feed her anything else for the rest of the night to give her stomach a break.

This morning she had no fever and felt completely fine. I have no idea what was going on with her last night as far as the fever goes but I think her feed rate on the pump was too high. I had increased her from 125ml/hour to 135 sometime last week and it seemed fine but over the past couple of days I had started to think maybe she wasn't tolerating it as well as I thought. Today we've turned her back down to 125 and she seems much more comfortable there. It's hard to imagine that food could be responsible for the fever she had but maybe it was. I know she also got into some shredded cheese on Friday too, and her reactions to dairy are always delayed. Ugh, I don't know if we'll ever figure this kid out!

Today and tomorrow are her days off from Periactin but we'll start again on Tuesday and see how she does. Hopefully we can keep the 400+ calorie days coming and hopefully we can use the increased appetite to help convince her to eat some new foods!

Saturday, October 12, 2013

Friends who "get it"

I've said it before and I'll say it many more times: we have been SO incredibly blessed to have so many other "tubie" families living in our area. There are only 2 things I would change if I could. One would be that the metro area we live in wasn't so huge and spread out since a lot of us are on opposite corners and more than an hour apart. The other would be that I only wish I could have met them all MUCH earlier on! (most of them either weren't tube feeding yet or weren't born yet when Raya started tube feeding though.) Anyway, I can't say enough about how much of a help and a sanity saver it has been for me to have these awesome momma friends and their kiddos that we know in real life, in addition to all of the amazing people I've met online.

What makes it even better is that Raya is old enough now that she's starting to understand the concept of friends. Toddler friendships are adorable and I love that she has friends at school and at church. I have to say though, that there is just something unique and special about friendships between kiddos with similar medical issues. I've introduced Raya's sweet little friends Lily & Whitney before:

The first time they met, they were between 14 months and 2 yrs 4 mos, and the age difference was still enough that they weren't super interested in each other, although they did notice each other's G tubes. Now that they're older (2 1/2 to almost 4), they talk and play and giggle together, and admire each other's feeding pump backpacks:
"I like your backpack, Whitney! She has a really cute backpack."

This week, we got to babysit one of Raya's other little buddies. He's about 4 months older than she is and although there are some differences in their medical conditions, they have a LOT of similarities as well, which is how his mom and I got in contact to begin with. Her other kids are close in age to mine and we've all become good friends. We were excited for him to come hang out with us for the afternoon. I told Raya that her friend J was coming over and then had to clarify that it was the J with the tube in his tummy, not the J from school. All of my kids refer to him as "the J with the tube in his tummy". :)

He was due for a feed shortly after his mom dropped him off so I plugged him in and got him going. As many times as I've plugged my own kid in to her pump, it still felt a little funny plugging another kid in! He thought it was pretty funny having another adult plug him in too since his mom is the only one that ever feeds him. He asked me once or twice, "You gonna feed me?" and when I told him I was and started plugging him in, the confused look was replaced by a big smile and he said, "You gonna feed me!" I think he thought it was pretty neat that somebody besides his mom knew how to do it.

As I was putting his backpack on him, Raya and J noticed that they had the same backpack. I wish I had it on video because they were cracking me up! They got all excited and went back and forth between looking at each other's backpacks and turning around in circles like puppies chasing their tails, trying to see their OWN backpacks so that they could verify that they did, in fact, have matching backpacks on. All of this while saying excitedly, "We have matching backpacks!" It was both hilarious and adorable. :)

The kids played really well together other than the occasional jealous moment from one of my kids who didn't think she was getting enough "J time" compared to the other kids. :)

As funny as it can be having one tube fed kid around, it was even funnier having 2, and especially because of the age they're at. (not so sure it would be funny in the middle of the night though!) When J's feed was over and I went to disconnect him, I told him to stay put so I could flush his tube. As I was walking to the sink with his syringe, he said, "You gonna put some water in that, okay?" At which point Raya cut in and said, "Yeah, cuz you have to flush his tube." I thanked them for their helpful instructions, flushed his tube and sent them off to play.

I have to say that babysitting a kid who doesn't eat is WAY easier than babysitting a kid who does eat. J's medical conditions mean that there are only a couple of foods he can safely eat without having painful or life-threatening reactions. Throw in some sensory issues, difficulty with oral motor skills like chewing, and difficulty swallowing and you have a kid that could care less about food most of the time. WAAYYYYY easier than babysitting a kid that eats. All I had to do was plug him in and he was good to go. (ah, if only life were really that simple...)

Another "tubie moment" that made me laugh was when both of the kids were wearing their backpacks and J's pump started beeping. Usually when Raya's pump beeps, one of the other kids will see if they can fix it. The older two are getting pretty good at figuring out what's wrong & getting it running again and they're so used to it that it's never a big deal when she starts beeping. However, apparently having 2 kids wearing feeding pumps is cause for panic when one of them starts beeping. At one point, J's pump started beeping and instead of their usual nonchalant reactions, the older kids got kind of a panicky deer in the headlights look and ran to get me so I could figure out who was beeping and fix it.

Since the weather has finally cooled down to a comfortable level, the kids spent some time playing outside. J LOVES cars so he and Raya both took rolling backpacks full of cars out to the back porch to play. I heard somebody's pump beeping again so I went out to investigate and found Raya trying to fix J's pump. As if that wasn't funny enough, the only reason his pump was beeping is because she took it upon herself to zip the front pocket of his backpack the rest of the way, which kinked one of the tubes and made the pump beep. (she can't stand when anything is partially zipped/buttoned/snapped/open/closed and HAS to fix it) We can add to the list of things I never thought I'd hear myself say: "Kids, let's not touch each other's feeding pumps, okay?"

They also thought it would be fun to dig holes in the garden. They said they were making a mountain to drive their cars on. Moments like that make me grateful that Raya is not a twin. :)

When it was time to go, we all walked out onto the front porch and the two little stinkers took off running. Raya was in Periactin mode (i.e. pretending she couldn't hear me and bouncing off the walls trying to fight off the drowsiness) and J didn't want to leave so they ran off together.
And for the record, I am in no way responsible for the outfit she is wearing other than not making her change her clothes. She picked out the size 8 tutu skirt and cheetah pajama pants (which were not the pajamas she had slept in the night before) and refused to take off the hot pink hoodie all day. Fall break=Mommy doesn't care what anybody wears. :)

We love our little tubie buddies!
Related Posts Plugin for WordPress, Blogger...