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**Disclaimer**

**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.**


Wednesday, May 3, 2017

Spaghetti squash with "zoodles" and sauce


I like food. I really do. Lately I've been working on getting things back into balance in our home, and one of the things I've been working on is incorporating more of a variety into our meals, and adding in new things that are healthy while also trying to accommodate everybody's food allergies. It feels like a huge accomplishment to cook a meal that everyone in our family can eat AND that everyone likes. I love spaghetti squash and the kids will tolerate it but they don't love it. I think I just haven't found the right recipe yet. Yesterday I decided to experiment with it and my lunch was delicious but also allergy-friendly, so I thought I'd share here.

First, I roasted the spaghetti squash. To do that, I split it in half, scooped out the seeds, oiled a foil-lined baking sheet, and placed both halves cut side down on the baking sheet. Then I baked at 350 degrees for 55 minutes. After it cooled, I used a fork to separate the shreds of squash into a bowl.


 In hindsight, I should have put it into a strainer to drain off some of the excess liquid. It has a lot of liquid so if you eat it with a sauce, it thins the sauce out.

For the sauce, I chopped 1/4 of an onion and sauteed it in oil until it was softened and translucent, then added 1 tsp of minced garlic and continued cooking for about a minute. Then I added 1/2 lb of ground turkey. Once the turkey was browned through, I added 1 can of diced tomatoes with Italian herbs (slightly pureed because I'm picky and don't like big chunks of tomato). While that simmered, I used my mandolin slicer to "zoodle" one small zucchini. An actual zoodler would make the process easier. I've been looking at this one on Amazon. I managed to finish with all of my fingers in tact anyway though, so it worked out fine. I added the zucchini to the sauce and simmered a couple more minutes until the zucchini was softened.

Since I hadn't seasoned the squash at all, I did add it teensy sprinkle of pink Himalayan salt and a little bit of garlic powder to it before I put the sauce over it. I sprinkled a little bit of parmesan cheese on top too. It was DELICIOUS and pretty quick and easy too. The sauce took less than 30 minutes including prep time, and with the quantities I used, it made 4 servings. Of which I ate 2, and gave another bowl to a friend who also thought it was tasty. Since we pretty much ate it all, I didn't offer it to the kids so I don't know yet if it's kid-approved. I will for sure be making it again though! I think next time, I'll add mushrooms too.

**This recipe is gluten free, grain free, dairy free, peanut free, tree nut free, soy free, and corn free. It is also keto diet-friendly.**

Roasted Spaghetti Squash with Zoodles and Sauce
Serves 4

1 medium spaghetti squash
1T oil
1/4 onion, chopped
1 tsp minced garlic
1/2 lb ground turkey
1 can diced tomatoes with Italian herbs (pulsed in blender, if desired)
1 small zucchini, cut into "zoodles"
salt, to taste

Cut spaghetti squash in half lengthwise and scoop out seeds. Line baking sheet with foil, spray with cooking spray, and place squash cut sides down onto baking sheet. Roast at 350 for 50-60 minutes. Cool, then use a fork to scoop squash out of shell into a strainer and allow liquid to drain.

Saute' onion in oil until translucent. Add garlic to pan and continue cooking for 1 minute. Add ground turkey. Once turkey is browned through, add canned tomatoes. While simmering, "zoodle" the zucchini and then add to sauce. When zucchini has softened, spoon sauce over spaghetti squash to serve.

Wednesday, April 26, 2017

Instant Pot Lentil Tacos

I am always on the hunt for recipes that our whole family can eat. With conflicting food allergies, meal planning can be tricky, but we have found a lot of things that work for everybody. I'm also working on ways I can add in more nutritional value, so this recipe is a great one.

We like Mexican food. It's pretty much all Donny's family ate when he was growing up. One of the first foods Raya willingly ate more than one taste of was beans. As much as we love beans, they take a while to cook from their dried state and even with the Instant Pot, I feel like it takes a long time to make beans. We tried lentils a few years ago and holy moly, lentils are AWESOME. They have a similar flavor and texture to dried beans (important for a child with oral sensory issues & strong food preferences!) but they're smaller and cook in a fraction of the time. They're very nutritious, with about 15 grams of fiber, 17 grams of protein, and less than a gram of fat per cup of cooked lentils. They are also a great source of folate and iron. Quinoa is also an excellent source of nutrition, and is a source of all of the essential amino acids. Adding quinoa to a recipe like this is a great way to introduce it to kids because it blends in well with the colors of the food and takes on the flavor of everything else. Another great thing about quinoa is that it can be ground and used as flour in gluten-free baking, and is considered a low allergenic food.

And then there's the Instant Pot. Oh, how I love the Instant Pot. In case you're not familiar, it's an electric pressure cooker that is pretty much the coolest small kitchen appliance ever. I have the 6 quart, 7-in-1 model and I love it so much that I almost want 2, and when I get my next one, it will be bigger to accommodate the appetites of my growing children.

Instant Pot Lentil Tacos with Quinoa

Ingredients:
1T oil
1/2 onion, chopped
1 lb ground beef (optional)
1 1/2 cups brown lentils, rinsed
1/4 cup red quinoa, rinsed
1 can tomatoes with green chiles (we puree slightly because some of us don't like chunks)
1 can vegetable or beef broth
1 small can tomato sauce
1 tsp chili powder
1 tsp salt
1 tsp garlic powder
1 tsp cumin
Crispy taco shells, flour tortillas, or tortilla chips (for nachos)
Shredded cheese, sour cream, diced tomatoes, and lettuce

Pour oil in Instant Pot liner and push Saute' button. When the oil is hot, saute' the onions until opaque and then add ground beef. Cook until browned. (We usually use paper towels at this point to soak up the grease but that's optional too.) Turn the Instant Pot off.

(*Or you can brown the ground beef separately and add it to the cooked lentil mixture after cooking.)

Add 1 1/2 cups rinsed lentils and 1/4 cup rinsed quinoa. Any quinoa will do but I liked the red because it blended in and nobody noticed it. Add in tomatoes, broth, tomato sauce, and seasonings and stir to combine everything evenly.

Put on the Instant Pot lid and turn valve to sealed position. Select Manual and set the time to 20 minutes. Once it's done, you can do a natural pressure release (NPR) or quick release (QR). I was busy when it finished so I did about 10 minutes of NPR and then QR for the rest of it.

This feeds our family of 7, and we have some very hungry teens who eat 4-5 tacos each. To extend the recipe to feed more people, add in a large can of refried beans after cooking the lentil mixture. We usually eat it on crispy shells but have also put it over tortilla chips as nachos and on flour tortillas for burritos. The dairy-allergic kids eat it with lettuce and Daiya cheese since that is also free of the other things one of them is allergic to. The wheat-allergic/rice-allergic kid eats it on crispy corn taco shells or with corn tortilla chips but has also just eaten it plain because it's really just that delicious.

(Unfortunately, I did not take pictures after it was cooked because it was a busy evening and everybody was hungry so they wolfed it down before I had a chance, but I'll add pictures next time I make it.)


This recipe can also be cooked on the stovetop. To do that, brown the ground beef and then remove it from the pan and set it aside. Add oil to the pan and saute' onions, then add lentils, quinoa, and seasonings to the pan and stir. Cook for about a minute. Then add everything else to the pan and bring to a boil. Reduce heat, cover, and simmer for about 25 minutes or until lentils are soft and have absorbed most of the liquid. Then stir in ground beef and refried beans, if desired.

Tuesday, April 11, 2017

Lessons in Life Skills: Food Labels

Recently I've been reflecting back on how different life is now than it was when Raya was a baby or toddler. The "On This Day" feature of Facebook is somewhat of a mixed blessing. On one hand, it reminds me how quickly my babies (none of whom are babies anymore) are growing up. At the same time, it gives me an opportunity to remember more poignantly the way things used to be. I really can't do justice to some of the struggles of her earlier years other than to say it was hard in every facet of motherhood. Today, it reminded me that there was a whole year of Raya's infancy during which she ate and drank virtually nothing by mouth, and relied solely on nutrition and hydration through her feeding tube. It is still hard to wrap the mind around the idea of a child that young being so averse to taking in anything by mouth that they would choose not to, but having seen her experience so much vomiting and relentless episodes of violent retching, I could hardly blame her. It was uncharted territory for us as parents, so we relied on the guidance of therapists and doctors and did the best we could to support her through that time of her life and encourage whatever positive interaction with food that we could.

Fast forward to the present, and we have seen her do such a turnaround! She is interested in food and is no longer afraid of eating. She actually LIKES eating. She still has her reservations about going outside of the foods she's comfortable with, but she has a great therapist who helps her stretch her comfort zone and we have seen her expand the list of foods she's interested in so much over the past year. We are doing our best to take advantage of all the improvements she has made, and one of the ways we're doing that is by working on some life skills around food.

Life Skill #1: Reading nutrition labels for food allergies
Raya has several food allergies, which has always been one of the difficult things about finding more foods she can eat. Some of her reactions are delayed, so we may not know for a day or two that the food didn't agree with her. Other reactions are potentially life-threatening. Regardless of the potential reaction, it's not good for her to eat things she's allergic to. She's getting to an age where it's important for her to start learning to watch out for herself. Now that she can read, she needs to learn what to look for and where to find it, so I decided it was time for a lesson in food labels.

I had heard that a new health food store had opened up near us recently so I took her with me to check it out. I sometimes have good luck finding things she can eat at stores like that so it's fun to check every once in a while and see what new things I can find for her. Since she is allergic to wheat AND rice, it's tricky to find things that are free of both. We found the aisle with all the baking mixes in it and I taught her to look for the word "Ingredients" and then read through the list and look for wheat, rice, and milk. I actually felt bad for her because the reality is pretty harsh. Eeeeeeeerythaang that's gluten free has rice in it.
We did luck out though and found a pizza crust mix and a cinnamon roll mix that were mostly just tapioca flour with a couple seasonings. Thank heavens she's not allergic to eggs because that sort of thing just turns out better with real eggs than with egg replacer.

I also realized while we were there that she had never actually eaten Daiya cheese. I bought some once and she was so uninterested that it never made it out of the package and died a frosty death in the freezer. She thought the Daiya "cheddar style shreds" looked good so we bought some to go along with the pizza crust mix, and so that she could put cheese on her tacos and make nachos. She is pretty much always excited about everything and nothing, but oh my word was she ever excited. She bounced along through the whole store asking me if she could try everything. An hour or so and $25 later, we had some fun new things for her to try.

That night, we made pizza. I don't think I even took any pictures because things got busy once we got home, but for being a non-dairy, gluten free, rice free pizza, it turned out pretty good. She and the other dairy-allergic child in the house both tried it. It would be a little bit of a stretch to say that Raya liked it, but she didn't dislike it. She ate 7-10 bites (nibbles, whatever) and then she was too sleepy to keep eating and had kind of had enough. Sensory-wise, it was a pretty intense thing for her. She had not eaten pizza since she was 2 or 3, and she didn't really eat much of it that time. The crust was very chewy and she's really not used to that kind of texture, much less a chewy crust with sauce, ham, and "cheese" on it. She did really well though and I was proud of her for trying it and for taking that many bites.

I think it was the next day that I made the cinnamon roll mix. It worked surprisingly well and they were totally edible! She really liked them. The instructions were to bake them in a mini muffin tin, so they're small, and that's a good thing for her. She took one to school for lunch and ate almost the whole thing.

She also tried a couple new flavors of the brand of non-dairy yogurt she likes and we bought some non-dairy kefir. I was not a fan but I found one kid who would drink it so it won't go to waste. We also got some plantain chips for Raya to try. She did try one but was not impressed and I haven't gotten her to try another one.

The next thing she needs to learn is what alternative names her allergens might go by so she doesn't miss something on a label, like what the different names of all the tree nuts are. We had to teach her big brother that too, and it's something we're still working on. Nut allergies are scary, and that's why we feel that it is so important to arm them with the knowledge they need to protect themselves.

Sunday, April 2, 2017

Thriving


If I had to choose one word to describe Raya at this stage of her life, it would be THRIVING. In nearly every way, she is in the best condition of her entire life right now. Medically, she is more stable than ever. She is tolerating larger bolus feeds than ever over a shorter time period than ever. She is eating a wider variety of food than at any other point in her life in spite of her food allergies, and she's able to eat more food at a time than at any other point in her life. And more willing.

A few weeks ago, she told me one morning that her tummy had been hurting when the school nurse or her aide connect her for her second feed of the day and that she hadn't said anything to the nurse about it because the way her tummy felt confused her. We were confused too. She had a hard time describing it because it wasn't like any pain she's used to feeling, and the pain got better after the feed started, not worse, unlike when she's had trouble tolerating her first feed of the day. After a lot of discussion between myself, the school, and her feeding therapist, we realized what she was feeling wasn't pain, it was HUNGER! She had started taking sandwiches to school for lunch when we started trialing gluten free oats again, and was eating a larger amount of food at lunchtime than she normally does. I'm not exactly sure how that made a difference but for whatever reason, when she was taking those sandwiches and eating more food at lunch, she started feeling a more intense hunger sensation by late afternoon when it was time for the next tube feed. This was a huge milestone for her and we are so excited to see her making more of those connections about the sensations she's feeling. It is so awesome as a parent to see all of the years of hard work we have all done paying off this way. We know there's always a chance that her dysmotility and chronic pain can flare up and set her back, but as she gets older, she's learning to cope and her body seems to recover faster from those flare-ups. It gives us hope that there will be an end to tube feeding for her. She has a long way to go before the tube can come out but she gets closer with every bite she takes and we know that when she's ready, she will do it.

Aside from being in the best physical condition of her life, she's really blossoming academically and socially. After school one day this week, she handed me a paper with some standardized test results on it. After reading it 3 times to make sure I understood it correctly, I realized the paper was telling me that she scored in the 97th percentile for reading, and that she's reading 2 grade levels ahead. I knew she was a good reader but didn't realize she was doing THAT well! She is so smart and cheerful and witty and sweet and thoughtful and energetic and just plain awesome. To see how far she has come in all aspects of her life. She's getting better at articulating her needs and how she's feeling because she understands that people are better able to meet her needs when she uses her words. It is so exciting to see that emerging. She is such a joy to us. She's turning a corner in her life where she is starting to speak for herself, advocate for herself, and take ownership of her story, and we are so proud of her. I was in the health office at the school today and heard the school nurse and Raya's aide talking about a student named Sunshine. After they talked for a minute, the nurse looked at me and said, "Does that work for you?" I must have had a confused look on my face because she said, "We're talking about Raya. We call her Sunshine." And that sums her up perfectly. She is Raya Sunshine.

Thursday, February 23, 2017

A post-CNW message for my fellow tubie mamas


This past weekend, I had the privilege to attend Clinical Nutrition Week in Orlando, Florida. The conference is put on by ASPEN (American Society of Parenteral and Enteral Nutrition). This was my 4th time attending as an exhibitor with Feeding Tube Awareness Foundation, alongside my friend and colleague and the founder of Feeding Tube Awareness Foundation, Traci. This one was extra special for me because I had the great honor of receiving the Lyn Howard Nutrition Support Consumer Advocacy Award. Of all the things I've done in my life, advocating for my daughter, our family, and others like us has been one of the most rewarding. I am grateful to be in a place where I can use my experiences to help others.

Speaking in front of a LOT of people very early in the morning

Me with the one and only Lyn Howard

When we attend conferences as exhibitors, we have a booth in the exhibit hall where those attending the conference can stop by and learn about our organization and what we do. Here's our booth from CNW:





And this is our friend Biff, whom we've had the pleasure of being stared at by at other conferences as well:
(I still think he looks more like a Desmond than a Biff.)

I realized this weekend as I was talking with hundreds of clinicians (GI doctors, surgeons, nurses, dietitians, and pharmacists) and industry professionals about the Feeding Tube Awareness Foundation and what we do, that most people only know about a small portion of what we do. With over 48,000 followers, our Facebook page is pretty well-known at this point, as is our website. Our facebook page is a place where parents can go to connect with other parents, ask questions, and get feedback about all things tube-related. The website contains in-depth information about all aspects of life with a child who is tube fed, and includes links to our educational materials, tubie love gear, and all sorts of helpful resources. All of this serves the primary function of supporting families, but that is only part of what we do. We have also worked hard behind the scenes to develop relationships with clinicians and industry professionals so that we can help them better understand the needs of the families they work with. For us, that is what Clinical Nutrition Week and the other conferences we attend are all about.

While at CNW, we had many opportunities to meet with people in every avenue of the tube feeding world. We talked with formula/medical food manufacturers, engineers, sales reps, home supply companies, physicians, nurses, dietitians, pharmacists, product development specialists, researchers, and everyone in between. We were also invited to give a 45 minute dinner presentation to a group of about 35 clinicians and industry professionals with one of the major formula manufacturers about the parent perspective on tube feeding. With each conversation we have had, not just at this conference but at all the conferences we attend, I have felt that there is a disconnect between the people who make, distribute, and sell the supplies that we depend on to keep our children alive and thriving. I have also felt from these industry professionals a great desire to eliminate that disconnect. The companies they work for function to make a profit. They HAVE to in order to stay in business and continue producing the things we depend on. However, as I have met with the individuals who represent the companies, I have felt the passion they have for what they do. They may not have the personal experience of living with a child who is tube fed, but they DO understand that the end users of the products they are innovating/creating/manufacturing/distributing/selling are real people with real lives, and that we depend on them to do their jobs so that we can do ours. They understand that even seemingly small disruptions can have disastrous results for us. They WANT to know how what they're doing affects families and how they can do better.

Likewise, I think there is a disconnect between us as end users of the products and services and the people on the other end of those products and services. We get our monthly supply shipments and don't think twice about how those supplies got to us. That is why I felt the need to write this post and express to other moms like me that there ARE real people on the other end of the supplies and services you depend on to feed your child! These people have families too. At the end of the day, they want what they do to be meaningful. They want to hear from us, the consumers, in a constructive way so that they can make whatever improvements are possible to the products and services we all depend on, and improve quality of life for our children and our families. In the 4 years that we have been attending conferences and cultivating these relationships, we have found that companies who deal with tube feeding are becoming increasingly receptive to consumer feedback. They can't fix what they don't know about, so they need to hear what our pain points are and what might help those things. When they know that information, they can innovate on their end to improve their products or services and better meet our needs. They do care, and they are listening!

Tuesday, December 6, 2016

Repost from December 2011: Grateful for c. Diff and Dirty Laundry

Facebook reminded me about this post from my family blog today. I had forgotten some of the details about the day, like how it ended, and all I really remembered was cleaning up the vomit. I'm glad I wrote the rest of it down because it's pretty warm and fuzzy at the end. I'm also glad life is different now than it was then because that was hard in a different way than the hard things we're dealing with now. Anyway, I thought this would be worth sharing again since I don't know if I ever posted it here.


Yes, that's right. Today, I found a reason to be grateful for c. diff (which is a terrible gastrointestinal illness that causes diarrhea, is highly contagious, and is not killed by hand sanitizer) AND dirty laundry. Let me back up a little.
Last night, I went to bed (later than I should have) with a tension headache. The kind that starts in between your shoulder blades, crawls up your neck, and makes you feel like someone has taken a chisel to the back of your head. I took something for it before I went to bed, but when I was awakened at 6:15 by the usual fighting over oatmeal packets and an argument about how many years Kaida will be when she goes to school, the headache was still there. After the typical routine of trying to quietly answer questions like, "Mommy, can I open another box of cereal?" and "Mommy, I don't like banana oatmeal, can't I open a new box and have strawberry instead?" and then shoo the children (who are seemingly unable to whisper) out of my room, Raya's head popped up over the side of the crib earlier than I was ready for.
I dragged myself out of bed and changed Raya's diaper and then went out into the living room to find Ashtyn's pillow and blanket and a giant mixing bowl on the floor. I asked her if she was sick and she said, "I threw up at 1:29 but I'm fine now." I asked, "Did you throw up IN the toilet?" and she said she had. She said she tried to wake me up but I wouldn't wake up so she made herself a bed on the floor. I told the kids to finish packing their lunches and get dressed, which took much longer than it should have but we made it out the door in time and headed off to school.
After I dropped them off, I remembered that last night I had been downloading videos off of the video camera so we could erase the memory so I went upstairs to check on it. Someone had left the bathroom light on and as I leaned around the corner to turn off the light, I was simultaneously blown away by the sight and smell of the 7 hour old vomit that Ashtyn had left all over the bathroom without mentioning it to me. I turned off the light, turned on the fan, and closed the door to allow myself some time to prep for the clean-up.
Remembering why I came upstairs in the first place, I sat down at the computer and checked my email. There was one from the credit monitoring website I use saying that my credit score had been updated so I logged in and checked it only to find that it had dropped by a whopping 64 points. To make matters worse, I also saw that the reason for the sudden drop was a mortgage that was paid in full on the house we sold in March that was now showing up on our credit report under a new mortgage company even though I had been assured that the statements we've been getting since August are a mistake that happened when their company took over loans from our mortgage company and that it wasn't being reported to the credit agency. Obviously it WAS reported, and so for the 12th or so time in the last 3 months, I called the mortgage company. After speaking to 6 different people (most of whom knew NOTHING) over the duration of about 90 minutes explaining to every single one of them that because of a clerical error, their company was screwing up my credit score, I was finally told that NOW our account is showing a zero balance and that they are investigating as to why it was erroneously reported to the credit bureaus even though it should have been. She said they'll see what they can do to get my credit score corrected too. I'll believe it when I have proof in writing!
After that lovely phone call, I remembered that there were 2 little girls running amok downstairs so I went down and found this:
And instead of getting upset with her, my first thought was, "Wow, she's not W-sitting!" (you know, the way little kids sit with their feet out to the sides that makes your knees hurt just looking at them) She has a hard time sitting with her legs tucked under her for very long at a time so her PT will be proud. :) THEN I took away all the candy that she was having fun unwrapping but not eating and made her spit out the giant wad of gum that she was practicing her chewing skills with. (her feeding therapists will be proud too :) I got her down and put the chair back, gave her the morning doses of her meds, and collected my supplies to go sanitize the bathroom upstairs. When I walked into my bathroom to get the cleaning supplies out, I discovered a clogged toilet with a whole other kind of smelly mess in it that had to be unclogged before I could start on the vomit. THEN I went upstairs to clean up the bathroom.
THIS is why I'm grateful for c. diff and dirty laundry:

I couldn't clean the mess up with one hand plugging my nose so I got a dirty long sleeved shirt out that was stuffed in Cole's shirt drawer and tied it around my face. It smelled like a kid that's been playing outside for a while but that was a heck of a lot better than what the bathroom smelled like. Then I put on my blue nitrile gloves that were left over from when Raya came home from the hospital last year with c. diff and I wore gloves to change her diaper until it was gone, and got to work. Had it not been for that nasty 6 week battle with c. diff, I wouldn't have had any gloves to protect me from the yuck. Since Cole stuffed his dirty shirt in the drawer instead of putting it in the laundry room to get washed, I had a gas mask to wear while I cleaned up puke. With that shirt on my face, I couldn't smell a thing but dirty little boy which was MUCH more pleasant than 9 hour old vomit. And as for the gloves, let's just say they prevented me from having to think too much about what I was scraping off the floor and every surface and crevice of the toilet (did I mention we had breakfast for dinner last night? eggs.). All the while, in my head I was just DARING the school nurse to call me and say that Ashtyn wasn't feeling well & needed me to come get her. I was all ready to tell the nurse, "You tell Ashtyn that when I'm done scraping her vomit that she didn't bother to tell me about before she went to school off of every surface in the bathroom, THEN I'll come and get her!!" But she never called and Ashtyn has been feeling fine ever since she threw up.
When all had been cleaned & cloroxed, I returned downstairs to find Raya perched on the arm of the couch with her feet dangling in the branches of the Christmas tree playing with ornaments. Kaida ran over and held up the bottom half of a broken ornament and said, "Mommy, Raya broke your kitty!" But Kaida can't say her "K" sounds. She says a "T" sound instead, so "kitty" doesn't come out the same when Kaida says it. I don't want to put that word on my blog but you can fill in the blank. At least that was good for a laugh. :) And that, my friends, was all before 10:30 a.m. Oh, and when Raya says "stomach" it sounds like she's saying "dammit" so we are frequently telling Kaida to say "cat" instead of "kitty" and Raya to say "tummy" instead of "stomach". With a straight face.
After plucking Raya out of the Christmas tree, I told the girls that we were getting the "H" out of the house for a while and going to the store. Kaida thought I meant the grocery store so she started to throw a fit because she hates the grocery store. And pretty much every kind of store. I got out a new pump bag for Raya's feeding pump and filled it up only to discover while priming the line, that there was a tiny pinhole in the bag which squirted formula up the sleeve of my shirt and jacket. So then I had to get another new bag, pour the formula out of the holy bag into the unholy bag, change my shirt and jacket, and THEN finish getting the feed ready. I finally got Raya fed and dressed and at 11:15 we were out the door. Raya's naptime is 10:30 but I HAD to get out of the house so we went anyway.
In the 1.5 mile drive between our house and the craft store, I got stuck behind or cut off by every elderly snowbird in the area, including one person who pulled out of the craft store parking lot in front of me into the left turn lane that I was trying to turn INTO the parking lot from, and then the guy got mad at ME because he couldn't see past me to turn out into the lane of traffic. Idiot.
Once we got inside the store, I didn't want Kaida to see the things I was buying so I was holding everything in one hand and trying to push the cart with the other hand while Raya cried, screamed, and yelled at me for not letting her hold things (which she was repeatedly dropping on the floor). One time I was looking at something and she accidentally hit her cast on the side of the shopping cart. When she realized that it made a loud noise, she started deliberately banging it against the cart just to "get" me. Then 2 minutes later she said, "Arm hurt!" Yeah, no sympathy on that one, kid.
All the way through the store, Raya was crying and screaming and every time we turned a corner, everybody turned to stare at us. I ignored the screaming and the stares, got what I needed, and went to the checkstand to pay. Raya stopped crying for a minute but there was another kid in line behind us that was having an even bigger screaming fit than she had been. The lady a couple people ahead of me in line started talking to the cashier and with a snide look on her face said, "Sheesh, somebody's not happy. Sounds like it's naptime. Why do parents even bring their kids to stores when it's naptime??" AAAAAAAAHHHHH!!! I wanted to THROW my SHOE at her! Really, lady?!? Do you not get it that sometimes things have to be done whether your child is crying or not and that moms don't enjoy listening to their kid scream any more than anybody else does?? Lucky for her there was another customer in between us or else all of the pent up frustrations of my morning would have been unleashed on her judgemental self.
While the next lady was paying for her things, Kaida did something to hurt Raya's broken arm so she started screaming again. I paid for my things and then when I looked at her again, her face was covered in awful-looking red spots:
I dragged the girls out to the car and by the time we had gotten out of the parking lot, Raya was almost asleep. It was noon and I was starving so we drove through Chick-fil-a to use a coupon for free food but we had to wait behind 6 other people in line, so by the time we got our food, we'd been in the drive-thru for 20 minutes. We went home and I put Raya in bed without even taking her jacket off because I didn't want to risk waking her up, and then Kaida & I ate our food while we watched "I Shouldn't Be Alive" on Netflix.
After we ate, I decided that I'd accomplished enough before noon to merit taking the afternoon off, if you will, so I snuggled up on the couch with my big fuzzy blanket and watched another episode of the show. Then I fell asleep and had a nice little catnap before going to pick up the other kids. I had planned on letting the kids stay & play for a few minutes so I could talk to my friend but then all hell kind of broke loose and we both herded kids back to the cars & went home instead.
As we were getting out of the car, a sales lady started walking towards us from the neighbor's house and started talking to my kids, which irritated me. I had my hands totally full (purse, feeding pump, Raya, mail, keys) and this woman starts yapping at me about how I clean spills out of my carpet, etc. I just stood there and stared at her for a second while trying not to drop anything and trying to keep an eye on my other 3 kids who were running around and asking me if they could have a snack. Couldn't she see that I was BUSY?? I politely told her that it was not a good time for me and went in the house.
While I was trying to calm the chaos of homework and figure out what people were going to eat for dinner, I looked over to see why the kids weren't putting the toys away and what the fighting was about and saw this:
In case you can't tell, Raya has taken one of the toy baskets off the shelf and crawled in the cubby so she could reach down behind the shelves and plug in the Christmas lights. And she's grinning at me the whole time, of course.
Then, as I was going through the mail, I came across a handwritten envelope. It was a very sweet thank you note that someone from church had sent me. She was thanking me for the lesson I taught last week at church (which I felt very self-conscious about afterward) and for a minute, I forgot all about my less-than-stellar day and was filled with gratitude for this sweet sister who, despite the difficulties in her own life, took the time to actually write me a note and mail it to me. (I'd like to say it made me forget all the yucky events of the day but it will take a couple more days to get that vomit out of my head.) But really, it was one small & simple act of kindness and it totally made my day. Moral of the very long story: 1. Blessings can come from unexpected places (i.e. leftover c. diff gloves and dirty shirt stuffed in a drawer) and 2. Do nice things for people because you never know what nastiness they've had to clean up that morning and your act of kindness might completely change someone's day! :)

Friday, November 25, 2016

Black Friday Deal on Instant Pot!!

Instant Pot!!

Okay, people, if you don't own an electric pressure cooker yet, now is the time to get one! This is my most favorite small kitchen appliance! We have adapted most of our favorite recipes so they can be made in a fraction of the time in this beautiful little piece of stainless steel and plastic.

There is nobody paying me to say this, I just have found it really, really useful! I can make large batches of things that my food allergic kids like, and then freeze them in portion sizes. I haven't tried making bone broth yet but that is on my list of things to do this weekend! Bone broth is so good for the gut, especially when you have a compromised gut like many kids who are on nutrition support do, and when you can make it yourself in about 30 minutes, why not?!

Amazon is having a SMOKING deal on the 6 quart Instant Pot for Black Friday. For today, the price is cut from the usual $129 down to $68! It really is an amazing deal so if you've considered getting one, now is the time! Click here to get this deal!



Wednesday, October 12, 2016

ENFit is here!

After years of waiting, stressing, and anticipating, ENFit is FINALLY rolling out! Yes, I used an exclamation point, and yes I meant it in a happy way. I can't be the only one that's tired of adapters, right?? I first heard of ENFit in early 2013 and at that point, it was supposed to roll out in 2014. Here we are in the 4th quarter of 2016 and we are FINALLY getting ENFit supplies for both ends of the connection, and all I have to say is it's about time!

A lot of people are still unsure of what ENFit is and why the change is happening. For more about that, you can read here, here, and here. The condensed version is that there have been serious injuries and deaths due to medical misconnections, so all medical device connections are changing in phases to be incompatible with each other. ENFit is the name of the enteral (feeding tube) connection. The process started 10 years ago, and although this {ridiculously long} transition phase is a pain in the rear, the end goal is safer connections for everyone.

After many, many delays, ENFit extension sets are now making their way through the supply chain, as are the updated Moog EnteraLite Infinity pump bags. The pump bags had been released in 2014 but there were some issues with the purple ENFit connector cracking, so Moog temporarily went back to the red Christmas tree connectors while they reworked their ENFit connectors to address the problems. Now they're back, and with a slightly different design and (hopefully) improved material that will not crack.

So far, extensions from Halyard and AMT are the only ones I have personally tried out. I had the opportunity to try Halyard's ENFit extension sets back in May. While I do still worry a little bit about the second port being able to pop open and I think I'd feel more comfortable with a cap that twists on, I really liked the ENFit-to-ENFit connection. We used the same extension for 10 days and did not have any med port accidents, accidental dislodgements of any kind, no disconnections between the pump bag and the extension, and really no problems at all with it. Being realistic, it takes more than 10 days to have problems come up, but I felt pretty optimistic about ENFit connections between feeding pumps and extensions after testing out the MicKey ENFit extension. Here's a picture of the ENFit end:


We were surprised (mostly in a good way) to have these new AMT hybrid ENFit extensions show up in our supply delivery this month, along with the new ENFit Moog Infinity bags. They are a hybrid extension, meaning they have an ENFit port and a non-ENFit port. There has been some confusion as people have started receiving these extensions. The white piece where the med port used to be is attached and is not removable. That part is the ENFit port.
I saw these hybrid extensions at a conference I attended in May and was a little confused as to why they would make the med port ENFit rather than the feed port since ENFit pump bags were available already but syringes were not, so I asked their reps. I don't remember the exact details but it has to do with regulations that went into place in July. The manufacturer wanted to provide people with a combination extension but in order to be in compliance with regulations, this was the way they had to do it.

Here is how the hybrid extension works with ENFit Moog pump bags (and Kangaroo Joey pump bags also, I just don't have one of those):
We (Feeding Tube Awareness) still recommend tightening the connection to fingertip tight and not twisting harder than that to avoid damaging either part of the connection, but I noticed that the design changes Moog made to the purple connector makes it so you can only twist it so far. Their previous design made it really easy to overtighten and crack the connector, but this one doesn't seem to work that way.


Syringes and Adapters
AMT has put a lot of effort into helping consumers through the ENFit transition. They have a whole line of adapters available to help us all use the supplies we have stockpiled, and to be able to use our current supplies with the new supplies we are receiving from our supply companies while the transition rolls out. {and no, they're not paying me to say that, I just genuinely appreciate the efforts that AMT makes as a company to serve the needs of consumers}

Since ENFit syringes are not yet being distributed en masse, AMT is including a slip tip syringe adapter with the hybrid extension sets. This is what it looks like:

To use the adapter, you twist the adapter into the ENFit port on the extension until it is "fingertip tight" and then give meds as usual. Simple enough, right?

If the slip tip syringe you're using fits into the syringe adapter, then yes, it is that simple. 

Buuuuut some of our slip tip syringes don't fit. Like that little brown 1 ml syringe on the right. It is the exact same diameter as the adapter and it does not fit. Nor do these 10 ml oral syringes that our pharmacy gives us, which I use for water flushes after meds sometimes. 

So what's a girl to do when the syringes don't fit the adapters?? Or if the adapters crack, which we have been hearing reports of on Feeding Tube Awareness. (If you have an adapter crack, please contact AMT's customer service department and let them know. They are very responsive to consumer feedback and they are aware of this problem and want to fix it!)

Our solution is to just not use the adapter. It so happens that 1 ml, 3 ml, and oral tip syringes fit directly into the feed port, as do cath tip syringes. We've actually been giving all our meds this way for a couple years now because we were tired of dealing with med ports.

I didn't realize the oral tip syringes fit directly into the feed ports until we were inpatient once and I saw a nurse give one of the meds that way. The tip of an oral syringe is longer than the tip of a slip tip syringe, so it actually does fit snugly into the feed port.


I know my opinion will not be popular with some but I really am happy to have ENFit extension sets and pump bags so we don't have to use adapters for that connection anymore. Since we're using the feed port to do meds anyway and now we're using the med port to feed through, giving meds is quick & easy.
For doses that are 1 ml or less, we use 1 ml syringe. For doses from 1-3 ml, we use a 3 ml syringe, and anything more than 3 ml, we use a 10 ml oral tip syringe. We also give things that have to be mixed with water, like powdered PPI packets and probiotic powder, so we use a regular cath tip syringe for those. This may not work for everyone but it has made giving meds much easier for us while we wait for ENFit syringes to reach the supply chain, and hopefully it will help someone else too!

(**Note** I don't have any information about the timeline for ENFit syringes, or how they will be distributed but if and when I hear more, I will share that information as well.)

Monday, May 30, 2016

Kindergarten: DONE!

It is unreal to me that another school year has come and gone for my awesome kiddos, and that kindergarten is already over for Raya! A lot has been asked of this crew in the last 10 months. Huge things that have meant making new sacrifices and taking on new responsibilities. They've risen to the occasion and I think we've had a great year! {read: we friggin' survived!} 


I can't believe how much they've all grown up this year! And how trashed their shoes are. Haha. I'm so proud of them and we are ready to have a fun summer!

Monday, May 23, 2016

Because of her feeding tube


There was a time in this girl's life when we wondered what the future held for her. We wondered if she would ever be healthy enough to live a normal life. If she would go through her whole childhood feeling as sick as she did during her first 18 months. How malnutrition would affect her development. Every now and then, I catch myself watching her in amazement. She has come so far and overcome so much! A lot of things are still not easy for her but she does them anyway. 
In my role with the Feeding Tube Awareness Foundation, I talk to parents all the time who are hesitant to go forward with tube feeding. They're afraid that using a feeding tube means they're giving up on their child, or that they're doing something permanent to their child if they consent to a G tube. I used to be that parent, and I wish I could help every other parent facing that decision to see that the most important thing is that their child is receiving adequate nutrition, and that for some kids, a feeding tube is the best way to accomplish that. A feeding tube is not the end of the world! For so many kids like mine, life BEGINS when they start getting the nutrition their bodies need! Watching her rake up hedge trimmings this weekend, I couldn't help but be in awe once again at the full and wonderful life she's living because of a simple little feeding tube.
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