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Knowing your kid

You would think by now that I'd easily recognize all of Raya's quirky little indicators that something is wrong. The problem is that it's all so subtle that I often feel like I'm imagining things when I start to think she's a little off. The past 2 weeks, she's been WAY off in a lot of her sensory processing issues. At first I thought that maybe she was coming down with something but it's been over 2 weeks now that she's been acting strange. The constant need to be hugged, less coordinated than usual, frequently sliding off of whatever she's sitting on (especially the couch or me while I'm on the couch), reduced clarity of speech (specifically not completing words when putting multiple words together and softening of letter sounds), running into things, and an overall decrease in body awareness are just a few examples.

Another thing that's been way off in the last 2 weeks or more is her inability to fall asleep at nap time. I didn't realize until today how significant this problem has become for her. A lot of kids her age stop napping or only nap a couple times a week and that's fairly typical. However, this week it has gotten to the point where it's no longer typical. Instead of buzzing around like a little honey bee all morning long and being full of energy and perky before naptime, Raya spent the morning laying around on her blankets. She'd get up and run around for a few minutes and then lay down again and say she was tired. This morning when Donny was changing her diaper before he left for work around 6:30, she told him she was tired. She kept telling me all morning and afternoon that she was "so tired" or "I just tired" and was actually happy to get in bed at naptime and tried to climb in by herself. Then she spent the next 2 hours not going to sleep. Her room is dark and cool, which is the way she likes it, and I didn't let her take a bunch of toys to bed like she would like to. Her sleep CD that she used to love now bothers her and she says it's too loud even when it's turned down low, so I didn't bother turning it on for her. I heard her singing to herself at one point and thought she probably had a poopy diaper since she never actually tells me when she does, but she didn't. Then about an hour later she did. After that, she wanted out of bed but even as I was getting her out she was telling me she was so tired.

We laid down on the couch for a while but when she lays down with me, she insists on laying on top of me. Lately though, she can't seem to stay on anything. If she's laying on the couch, she constantly slides off onto the floor. Sometimes after she's fallen off several times she'll tell me she can't stay on, like she wants to stay on the couch but her body just won't cooperate. If she's laying on top of Mommy on the couch, she constantly wiggles & squirms and falls off of me too, which goes back to her recent difficulty with body awareness. It's not restful. Anyway, Donny and I were talking about it today and realized that even though Raya seems to go to sleep quickly at bedtime (which is between 6:30 and 7:00 for her), she wakes up early (sometimes before 6) and hasn't had a good nap more than one or two times in probably the last month. Now that she's not sleeping in our room anymore (woohoo!) I'm not sure, but I would venture to guess that she's been stirring in her sleep too so I don't think she's getting the best quality sleep lately either. All things combined, I'm declaring her sleep deprived and we're finally going to try giving her melatonin like a couple of her doctors have recommended in the past month.

On top of all of that, I've realized/decided that she needs a slower feed rate. Let me back up. It used to be REALLY easy to tell whether or not Raya was tolerating her feeds. If we tried to feed her too fast, she vomited and/or gagged/retched. Easy peasy. Now that she doesn't do that all the time anymore, it's MUCH harder to tell if the odd things that we're seeing have to do with her feeds or not. Because SO much of Raya's "special needs" have to do with lack of sensory integration, certain behaviors (like all of the things I described previously) can actually be tied to her gastrointestinal issues. Here's a list of the subtle signs that she's not handling the current feed rate like she normally does:
  • increased reflux sounds (i.e. throat clearing, extra swallows, loud swallows, etc.)
  • lack of energy during & after feeds
  • increased crabbiness
  • grabbing her tube & refusing to let me connect the extension to start a feed or give meds (she's NEVER done that until recently, and PLEASE don't bother telling me that it's behavioral or to get attention because it's not)
  • says that she's "humbwee" (hungry) during or after a full 250ml (8.5oz) feed, which tells me that she doesn't understand the difference between hunger pain and other types of stomach pain
  • gets upset and angry when I tell her it's time for formula in her tummy; yells that she doesn't want "foh-lah"
  • sometimes has more of the last feed left in her stomach than she should (really, there shouldn't be any left)
  • hiccups, violent & sometimes painful
  • spitting up, also known as "water puke" or "puke in my mouth," as Raya calls it
So yeah, even now that I'm typing that list, I'm more and more sure that that's what her problem is. Of course with her it's always a "chicken or the egg" problem in deciding which is causing which, but for now I'm going to cut her feed rate so she'll be fed over about 45 minutes instead of 25 and see if that helps. I don't always use Farrell bags to vent her while she gets fed but I'm going to do that too and see what happens. They're not my favorite but we'll see. They can help determine whether the feed rate is too fast as well because if it is, the formula will back up into the Farrell bag instead of going into the stomach.
(*side note, sometimes I type a statement like that and then stop and think, wow, is this really my life?? is that really my child we're talking about?? And it is, and I'm okay with that, it's just that this wasn't what I pictured before I had kids and there sure as heck wasn't any chapter in those "what to expect" books that covered tube feeding!)

I suppose that's it for now. Tomorrow marks 2 years since one of her hospital stays and this afternoon, she and I looked through the pictures from it. She was confused and kept asking me if it was her friend Lily in the pictures. :) I told her it was little baby Raya and she liked looking at the pictures. I know she still carries the trauma of those hospital stays but I'm so glad she doesn't actually remember them.


  1. Thanks for this post! I am also a mommy of a tubie baby, and I know how it feels to just KNOW something isn't right...even when no one else has that sense. So thankful that God allows the 'heads-up' on occasion.

  2. Oh my, it's good to know I don't feel alone in this "knowing my child" thingy. Ian shows such random, peculiar, and what seem like unassociated signs of feeding intolerance also. You would think belly pain and residuals would cut it, but they don't. Often times we find sleeping patterns, temperatures, timely spacing of activities and-or meals, feeding rates, additional of Pedialyte, medicine regimen changes, bloating, crabbiness, snuggles, frustration, and so on and so on.......... seem to double, triple, and even quadruple on top of one another.

    Solving one simply leads to another underneath. Sometimes, by the time we get to the bottom of whatever it was, the next thing has come along. Strangely enough, I feel like I know what he needs, but it only has surface value. Elimination with us is a frequent game. We change Ian's feeding schedule, regimen, rate, routine, or what-have-you, every week, sometimes daily. As a type A personality that likes having routine and schedules.... it drives me crazy. Ian also like routine, but when it comes to meals, that goes out the window.

    I know what you mean about "everyday phrases" for us that include words we never imagined in our vocabulary. I found myself needing to go back to square one with so many people. We love using the Farrell bags at night when Ian is sick, or has recently had surgery. If you know of a great way to use them during the day, I would be interested in learning. Although, Ian's meals are at least 60 minutes, so it would need to be an "on-the-go" Farrell bag solution.

    I hope you get things sorted out so she can have some relief before the next thing comes along. Ian also does not have an "accurate" understanding of belly pain, or pain in general. I know he carries trauma from the hospitals. Even though I know he will not remember it, I wonder what type of effect it will have on him as a child, a teenager, and as an adult some day.


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