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Weight check & a pretty good day

Raya had her weight check today. Bright and early. At 8:00. What was I thinking. At her last GI visit on December 16th, she weighed 15.1 kg, which was only about a 3 ounce gain since the previous visit about 3 months earlier. One ounce per month is not a good rate of gain for a 4 year old. Just FYI. Today, she weighed 15.2 kg, (about 33 lbs 8 oz) which means she gained about another 3-4 ounces in the past month. That's still a little lower than her doctor probably wants, but it's a whole heck of a lot better than a net gain of 3 ounces in 3 months. Hopefully the trend will continue and the oral intake will increase to make up a few more calories.

I've been toying with the idea of not doing a tube feed first thing in the morning (or worse, doing it super early in the morning which would require me to get up super early in the morning and start it...MOOG, where is that darn delayed start feature I've been asking for??). The reason I've been thinking about that is because Raya actually IS hungry first thing in the morning. She wants to eat breakfast. Right now, she gets a pretty decent amount of calories for "breakfast" because her breakfast has been potato chips. She can get her minimum requirement of oral calories in for the day just from that as long as she eats "approximately 11 chips" like the bag says. One serving is 160 calories and in order to hit her minimum calorie goal, she has to eat 140 calories. When she goes to school, they have snack time, which is a great opportunity for her to benefit from the peer modeling. You should see the way some of those preschoolers wolf down their snack! The day I was there during snack time, the kids were eating some kind of sausage biscuit for snack and I couldn't believe how many of them actually ate the whole thing in about 15 minutes. It blew my mind. Anyway, as long as there's no cross contamination from her friends' snacks (which her teacher is super careful about, thankfully) it's a great opportunity for her to eat with people other than her own family, and to see other kids her age eat. (no really, it blows my mind to watch other kids her age eat food)

I usually start her first tube feed of 8 ounces when I drop her off at school, and it takes 2 hours to finish. Snack time is about halfway through that 2 hour feed, so she has about 4 ounces of formula in her stomach (give or take, depending on how fast her stomach is emptying at the time) when it's time to eat her snack. Some days she eats it and other days she is completely uninterested. I can imagine that if she was not being fed formula at the same time she's supposed to be eating a snack, she would probably eat more of her snack. The problem is that if we skip the breakfast feed and then she comes home at lunch time and is hungry from not having a formula feed at breakfast, she will actually eat a good sized lunch and then she's too full to have the lunch time formula feed. While this may sound like a good thing having her eat a small breakfast, a snack, and a decent sized lunch, the most calories we've EVER gotten into her orally by noon on any given day was about 400. Once she has eaten a good sized lunch, her delayed gastric emptying with solid foods means that we can't start feeding her formula for about 3 more hours or else it hurts her stomach. (not because of the formula, because her stomach is too full) We know based on tracking her weight gain & caloric intake that she NEEDS 1100-1200 calories daily in order to grow, so having her only get 1/3 of those calories by noon means that we are struggling big time to get all of her calories in within a 24 hour period, especially without doing a continuous night feed. I have many reasons for not wanting to do night feeds but the two biggest are that 1. night feeds would be another big step backwards, and 2. feeding her all night ALWAYS means that she's totally soaked in the morning and there are wet pajamas and bedding to wash. AAAAAND, that's assuming that she does actually eat a decent amount of calories for breakfast, snack and lunch, which is inconsistent at best right now.

So yeah, there's never a clear or easy answer, is there. Right now I know that a lot of her calories come from fats & oils, which I hate, but when the amount of food she eats is so extremely limited, we have to maximize her calories by giving her the most calorically dense food we can. Even if it means adding olive oil to her applesauce. {gag}

Moving on...

So speaking of food, I decided it was time to try a grain. At the grocery store a few weeks ago, I saw that they had a gluten-free flour blend in their bulk section that did not have rice flour in it. Shocker of all shockers. I'm telling you, that rice allergy really throws a wrench in working around the wheat allergy. Anyway, the only thing that was in the flour blend that she had not tried before was sorghum, so I decided that sorghum would be a good thing to try. {Because I'm pretty sick of cooking with coconut flour. and also because it's cheaper than some of the other specialty flours.} Today we took a field trip to a little kitchen store near by that sells a lot of specialty flours & baking ingredients so that we could buy some just plain sorghum flour. We also grabbed some potato flour while we were there because they had it, and because she's totally good with potatoes. No idea what we'll do with it yet but now we have some. She was pretty cute carrying the bag of sorghum flour around the store. I could tell that she was proud of herself for learning the word "sorghum" so quickly because she used it as much as possible the rest of the time we were there. "Sorghum doesn't have wheat in it. Wheat makes me sick but sorghum doesn't make me sick. Does sorghum have rice in it? Rice makes me sick too. But not sorghum." {hopefully she's right...} As we were walking around, she pointed at everything on the shelves and asked, "Does that have wheat in it? Wheat makes me sick. " Such a smart girl. :)

We decided on the way home that we should try making some pancakes with her new sorghum flour. She couldn't wait.

Unfortunately I was not prepared ahead of time for this little undertaking so she had to wait. She watched an episode of Jake and the Neverland Pirates while I searched Pinterest to find a recipe. I found one that used sorghum flour AND coconut flour and decided to try that one. I thought maybe it would be a good idea to blend it with something she's used to eating so that the taste would be somewhat familiar and so that I wouldn't be overdosing her with sorghum on her first try with it. I will summarize my sorghum-coconut pancake making endeavor with 3 short statements:

1. I hate cooking with alternative flours
2. Coconut flour is rather overpowering, even when you're using a fraction of it compared to the amount of all the other ingredients in the recipe
3. I hate cooking with alternative flours

No really, making pancakes without REAL flour is not fun. Perhaps if we could still use eggs, it wouldn't be so bad, but eggs have not been too kind to her either so we are not using them at the moment. As luck would have it, the recipe I used didn't even call for eggs so I didn't have to substitute anything for them. I followed the recipe to a T other than cutting it in half because it made a huge batch, right up until the part where it said, "Pour batter into hot skillet..." Um, my batter was not pourable. I had followed the recipe exactly, but ended up having to add a LOT of water in order to get it to a consistency that resembled pourable. (coconut flour can soak up a ridiculous amount of liquid) I tried cooking the batter at varying consistencies during the process of adding extra liquid, and it didn't matter what consistency the batter was at or how thin I spread the batter in the pan, those dang pancakes would NOT cook all the way through. They don't taste bad, although they taste heavy on the coconut, but that was without a doubt the UGLIEST batch of pancakes I've ever made. In no way whatsoever do they resemble the pretty picture on the website where I got the recipe. I've come to the conclusion that any pictures on the internet of pancakes that are supposedly gluten-free (and rice-free and egg-free) are NOT actually pictures of pancakes made with the recipes that are posted with them because in all my attempts to make decent non-wheat pancakes, not once have they looked that good. Ok, maybe the quinoa pancakes I made a while back did, but other than that, nope. Maybe I need to try a different brand of coconut flour or something. On the bright side, the fact that Raya has never had a regular pancake means that she has nothing but all of my other crappy attempts to compare them to so she loved them. I put them in bags in the freezer so I can pull a couple out at a time when she wants pancakes. Then I kind of laughed because I had been looking for ideas for freezer meals so I can put food in the freezer for when the baby is born and thought to myself, I probably just knocked out a month's worth of freezer meals for Raya with that batch of pancakes. Not funny but kind of funny. :)

I also managed to make a double batch of pizza rolls (roll dough with cheese & pepperoni inside) and put half of it in the freezer so I did get started on our freezer meals. We ate the other half for dinner and they were delicious!

Perhaps the most exciting news of the day was that the Feeding Tube Awareness facebook page hit 15,000 "likes" this evening. We are less than a month away from Feeding Tube Awareness Week, and at this time last year, we had about 8,000 likes, so it's pretty awesome to see how much it's grown in a year. There are some very exciting things coming up in the near future for FTA and I'm SO blessed & grateful to be a part of something so great!


  1. Hi my name is Jammie and I was looking around to help me put into words of gratitude . I have a son Isaac who was tube fed for 3 years 5 months and 12 days. And just want to share with you that you are not alone. I feel/ felt every emotion that you have gone through. We are now tube fed free. For now.. Don't know what the future holds. He is eating enough by mouth we took the tube out (doctor approved).

  2. Somehow it was cut off. Just wanted you to know there are other families out there that have to count bites,get weird looks and people who just don't understand.
    Hope you have a great day. I have been in your shoes.


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