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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!
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