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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…
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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…