Wednesday, February 12, 2014

Learning What to Eat

So now that Princess is eating food as well as her formula, things have gotten a little difficult. Even before we went back to the nephrologist after we got the diagnosis from the endocrinologist, I came to the realization that Princess probably shouldn't have any high potassium foods. I mean, yes, she is on medication to help with her potassium levels, but we probably shouldn't be just giving her foods that excessively high in potassium. I mean, she is still growing and the medication level is adjusted about every couple of months for that reason. She is also have labs done to check her potassium about every 2-3 months now. I know that also factors into her dosage of the medication. I just worry that if she isn't on the correct dosage and I give her something high in potassium, we may end up in the hospital.

So we met with the nutritionist after we met with the nephrologist in November. At that point, I was already doing what she would recommend: read labels and watch portion sizes. Yeah, I've become really good at reading labels. Unfortunately, potassium isn't usually listed on the label. Thankfully, my mom found a website that will give full nutritional information on almost everything. So that's our go to if we have questions about what Princess can and cannot have. I started making my own baby food at that point too. I asked WIC to quit giving me the baby food vouchers because there's only like 6 different baby food fruits and veggies that Princess can have. She was able to have more food if I just took what she could have and pureed it in the food processor.

So, as a result of Princess's condition, we have decided to give up high potassium foods as well. I say "we" because I don't want Princess to feel that she is different. I know, eventually, I'm going to have to tell her when she's older. I mean, she's going to ask why she has to keep taking medication, why she has to go doctors all the time, why she has to continually get labs done, etc. So, yeah, I'm not looking forward to that conversation, but it will come. Well, initially, I thought we'd just be giving up bananas. But then I looked up "low potassium diet" online. (This was before we met with the nephrologist and nutritionist.) Oh was I surprised! Here's the short list:

  • Bananas
  • Tomatoes and tomato based products (ketchup, pasta sauce, salsa, etc)
  • Potatoes and potato based products (French fries, mashed potatoes, etc)
  • Nuts (almonds, walnuts, pistachios, etc)
  • Beans
  • Melons (except watermelon)
  • Kiwi
  • Avocado
  • Fresh Pears
  • Fresh Peaches
  • Oranges and orange juice
  • Raisins
  • Raw Carrots
  • Sweet Potatoes
  • Winter Squash
  • Chocolate
  • Yogurt
  • Milk
Well, we go back to the nephrologist next week and I am definitely asking about the milk. I mean, Princess is almost a year old. She'll be coming off the formula soon. That's typically when you transition to whole milk. But milk is considered high in potassium. So I don't know what we're going to do. Are we going to limit her milk intake? Are we going to increase her medication? That's for the doc to decide.

I know I just shared this photo the other day, but I wanted to share it here too. I just kind of works!

This of course is going to follow us the rest of her life. In fact, in talking with J, our developmental therapist, he says that though we may not need PT/OT/Speech past 3 years of age, it would probably be a good idea to keep her on an IEP due to the medical issues. I don't know what that will look like. We've still got a year and a half before we transition from IFSP to IEP, so we'll have to see. But if it will make talking to the schools about her disorder and what she can and cannot have easier, I'm all for it!

So, if I ever get to go out with people without Princess or Little Man, don't be surprised if I order a side of mashed potatoes or sliced tomatoes! It's because we are trying our best to keep Princess healthy.

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