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Showing posts from 2017

The space between white dresses

I still remember walking into the little boutique shop and heading straight for the tiny white dresses. I didn't have anything specific in mind but I was determined to find just the right dress for my tiny girl. I looked, and looked, and looked. There were dozens of different dresses, each one a little different and each one beautiful, but none of them felt like "the one". Then I saw it. It was a simple but elegant long, white satin gown with a few delicate ribbon flowers across the front. (and a reasonable price tag) It was PERFECT, except one thing. They only had a size 3-6 months. There was no way my 7 pound baby could wear that. I looked through the 0-3 month dresses again, hoping I had just missed it before, but no luck.

Then I turned around and saw a smaller version of the exact dress hanging on a high rack that I hadn't noticed before. I took it to the register where the nice lady tried to talk me out of buying a newborn size dress and reminded me several time…

I've been waiting her whole life for this...

This girl is amazing. I can hardly believe the progress she has made in the last 2 months with eating!! I've been spending a LOT of time in the kitchen and grocery shopping to come up with things she can (and WILL) eat. I cook for her, and then she eats what I cook. {most of it} I can hardly believe how much she's eating lately and what she's eating!


This morning, we had our first appointment with her new GI doctor since our beloved GI that we've been seeing since Raya was a newborn has retired. Changing doctors is NOT my favorite thing, but we don't have a choice this time. Thankfully the new one came highly recommended and I think it will be a good fit. I was a little nervous about what her weight would be since so much has changed with her oral intake since our last appointment, but she actually gained a whole kilo between July and today. That is HUGE! In the past, she has not gained as well on food as she has on formula so it is a huge relief to see her mainta…

Holding together and falling apart

"I am made up of two worlds; one in which I exist to hold everyone together and the other where I watch myself constantly fall apart." --K. Piper

I read this quote today and it felt profound. It evoked emotions that I couldn't quite identify. Today has been a heavy day. People dear to my heart are suffering for a variety of reasons, and none self-inflicted or remotely deserved. I have spent much of the day with a lump in my throat, not for myself, but in thinking of how the people I care about must be feeling, and out of helplessness that there is nothing I can do to ease their pain or change their circumstances.

When I was 21, my younger sister died in a car accident. Though many years have passed since that day, I have vivid and almost visceral memories of many of the events of the day, and many of them have come flooding back to my mind today. I can remember the strangest details of certain things, like reaching into the handle of the truck to get the phone out after …

Special.

Dearest daughter,

There have been many times in your almost 8 years that we have had to have tough conversations. Tonight was one of those nights. Tonight, I asked you if you could tell me why you've been having a hard time wanting to go to bed lately. I ask you questions like that sometimes and never know if I'm going to hear an answer from you or not, but this time you did answer.

You told me that your teacher has been reading the book Wonder to your class. You told me that it's about a boy with special needs who has had a lot of surgeries. Then you said something that kind of knocked the wind out of me.

"I realized that I have special needs."

I asked you who told you that and you said, "Nobody. I figured it out myself." That part didn't surprise me at all. You are incredibly smart, and so beyond your years in many ways. I've uttered the phrase "special needs" countless times in the past 7 years without really batting an eye. It alway…

Gluten-Free Pumpkin Chocolate Chip Muffins with Sorghum Flour

Today's experimental gluten-free baking challenge was chocolate chip muffins. Raya has been doing SO well with the blueberry mini muffins I made her last week that I thought I would try to branch out on that same concept. "Food chaining" is a common practice in feeding therapy where you take a food that the child likes and making small changes to help them expand what they are comfortable with eating. When Raya tried the blueberry muffins last week, one of the comments she made was, "These are good but I wish they were chocolate chip instead of blueberry." At first I was thinking I would just use the same muffin mix but add chocolate chips instead of stirring in the little can of blueberries, but then I realized there is probably blueberry flavor in the actual muffin mix too, and that would be gross. Being that it's now September, I keep seeing pumpkin flavored everything popping up everywhere so I decided I'd embrace the pumpkin and see if I could gra…

Gluten-free, Allergy-friendly Beef Stew

We have a problem. Raya wants to eat and I don't know what to feed her! I'm kidding, it's not a problem. I've been waiting for this for years so I'm finding a lot of joy in cooking for her and trying to find new foods for her to eat that won't cause problems for her.

Last night, I had thawed out a roast but then when it came time to start cooking and we got the meat trimmed, we realized it was a smaller roast than I thought it was when I got it out, so stew in the Instant Pot became plan B. I looked on Pinterest and didn't find any recipes that worked exactly as written so I combined ideas from a few and decided to just wing it. Here's what I came up with:

Gluten-Free, Allergy Friendly Beef Stew 1-2 lbs beef stew meat, cut into 1 inch cubes 2T tapioca flour 1/2 large sweet onion, chopped 8 medium red potatoes, cut and diced 4-5 large carrots, peeled and diced 2 cans beef broth (approx. 4 cups) 2T tomato paste 1T Worchestershire sauce 1T soy sauce 1T bro…

Muffins!

I happened to be walking past the gluten-free section at Walmart a couple days ago and on a whim, decided to look at a couple of baking mixes on one of the shelves. Pretty much every GF baking mix has something in it that Raya can't have, but I look at them every now and then anyway. SO. This time, it just so happened that there was a blueberry muffin mix that did NOT have rice or tree nut ingredients in it!

Krusteaz Gluten Free Blueberry Muffin Mix
I think Krusteaz is kind of a gross sounding name for a food company but HOORAY FOR KRUSTEAZ!! The main ingredients in the muffins are sorghum flour and millet flour. I was a bit nervous about the millet. We did some experimental baking last summer with millet and it was AWFUL. We made chocolate chip cookies and while they were baking, they smelled like barf. They tasted fine until the aftertaste came. It was barfy too. Or is it barfesque... Either way, they were gross so I didn't get my hopes too high for these muffins, but decided…

Self care: Sanctuary and a day of rest

I don't know if it's just me or if the messages that have been shared at church recently really have gotten better, but I have found church to be so uplifting and refreshing lately. Of course that's how it's supposed to be, but some days I find it easier than others to focus on what's being shared and figure out how it applies to my life.

Today, I walked into church {15 minutes late...okay maybe more like 20} in time to hear my brother-in-law's name announced as the first speaker. It was nice having him speak, if for no other reason than my kids were excited to see him up there so they were quiet while he was talking. {Kidding...sort of...} I sat on the bench and listened intently as he shared his feelings about the temple, and how attending the temple has changed his focus in life and given him peace when he has needed it the most. The strength of the testimony behind his words was palpable in the room and his words resonated with me. Perhaps because I have c…

Settling in to new routines and schedules

It's hard to believe how quickly the first weeks of school have gone by! This year, we have kids in 3 different schools and they take 4 different modes of transportation to and from school (none of which is me driving, haha). I thought that would make things completely crazy but it has actually been really nice. Instead of having to rush to get 3 or 4 kids out the door all at once, I can check in with each of them individually to make sure that they have everything they need and are ready to go. It has made getting Raya ready in the morning SO much easier than the past 2 school years.

One of the struggles she has had in the past is difficulty focusing on the things she needs to do to get ready for school in the morning. She was (and is) very easily distracted. Last year was especially difficult. Even with frequent reminders throughout the morning, I would find her playing with toys because she had gotten distracted and forgotten what she was supposed to be doing. It wasn't tha…

It's school time again!

After what felt like the SHORTEST summer break yet, we're a couple weeks in to another school year already. In some ways, the summer went by too quickly because we stayed so busy all summer, but we were ready to get back into the swing of things. We had a really REEEALLY busy summer, but it was also a great one. Some of the kids did swim team for the first time and really enjoyed it despite the 6 am practices. All but one did swimming lessons or diving classes and they all loved that too. In the past, I've felt like they didn't get much out of swimming lessons but it was great to watch how much progress they made after a solid 6 or 7 weeks of practice. Keeping them busy helped keep them happy too. Aside from all the pool time, we spent a lot of time at the library, playing with friends, having lunch at one of the nearby schools, doing chores, and reading. We spent a lot of time (almost all of it) together, and it was just what we needed. Sometimes that was exhausting in it…

Another school year in the books!

It's hard to believe that another whole school year has passed. Raya has had a great year at school this year. We are extremely blessed to have had a caring teacher, wonderful aides, and a really great school nurse. Without any of these people being as awesome as they've been, sending her to school would be so incredibly stressful. It's hard to trust other people to take care of a child who needs specialized care, and so wonderful when you find a village who you know can and will take good care of them for you.

She has done even better than anyone expected her to this year. Academically, she blew us all away. She is reading at a 3rd grade level, learns very quickly, and remembers things well. She LOVES school! She is sad about her teacher not being her teacher anymore but we are crossing our fingers and praying that she'll keep the same aide for the coming year. We had an IEP meeting earlier this month and it went so well that I had to pinch myself. Hearing the words, …

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 h…

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 l…

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.…

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 fee…

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.



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 sta…