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C’mon, get hungry

By Goddess in Progress · Comments (7)· April 9th, 2013

Welcome back to “101 things you never wanted to know about feeding therapy!”

We were stagnant for a while, in the feeding sphere. No real improvement in skills or interest. Not uncommon in the brutally slow world of teaching a kid how to eat, but frustrating nonetheless. We were due for a breakthrough, but how to get it?

Apparently, the answer is to try to teach Ellie what it means to be hungry. In two years, she has barely ever been hungry. She is fed an exact amount on an exact (ish) schedule. And it’s a completely passive process for her, she doesn’t have to do anything. She long-ago lost the connection between a rumbly tummy and any version of “eating.” So the question is, how do we get it back?

About a month ago, we cut 100 calories out of her daily ration of formula. And while the difference wasn’t striking, she suddenly seemed a little more attentive and willing at her feeding therapy appointments. We even progressed to little bites of soft food – bananas, sweet potatoes, bits of American cheese, as well as some favorite crunchy ones like graham crackers. But while those were good for new tastes and textures and oral-motor skill-building, I certainly wasn’t getting enough into her belly to make up for those 100 calories.

Enter: prescription medication. Our GI doctor wrote us a script for an appetite stimulant. (Which is apparently also an antihistamine, and also helps settle her GI tract after she gets sick? I don’t know, man, I just work here.) Though the first dose made her a little bit loopy, it seems to have had a near-immediate effect.

When I try to feed Ellie at home, I can never get as much into her as our feeding therapist can. I don’t have as much practice or as much patience, and sometimes I think Ellie is deliberately being a pill just because I’m her mom. So the best I can usually do is to get an ounce or so into her, with a lot of stress and cajoling and the need to rest afterwards.

This morning, with the help of an appetite stimulant and a generous helping of iPad games, I got the vast majority of a 4-oz container of yogurt into her. No fighting. No stress. Stopped after 20 minutes, and I could actually see the bottom of the cup. By my math, nearly 120 calories. And while that was the best I’ve ever done, I had three or four times last week that we did nearly as well.

Three cheers for modern medicine. Three cheers for getting a big enough volume and enough calories into her belly in a short enough period of time that she might actually start to connect “eat food” with “my tummy feels good.” Miracle of freaking miracles.

There are so, SO many other skills that we need to work on, it blows your mind to think about having to teach someone how to do it. Use your upper lip to get the food of the spoon. Use your tongue to move the food to your teeth so you can chew it. Tastes and textures galore. But this particular barrier, making the connection between hunger and food, feels like such a huge step that will allow more of it to happen. I think we’re getting there.

Comments (7)

Categories : Toddlers

Tags : feeding therapy

She’s asking for it

By Goddess in Progress · Comments (8)· March 18th, 2013

The first time I had toddlers, one of the things I was always hearing people obsess over was potty training “readiness.” I wasn’t wringing my hands over it quite as much as some people I knew, but still, it was a big topic of conversation in the parents-of-two-year-olds set. Dry diapers in the morning, a certain body awareness, probably even some particular arrangement of tea leaves were all cited as being “ready” for potty training. I don’t think I paid much attention, I just up and decided to rip off the band-aid one weekend and went all boot-camp with Rebecca. Though it felt unbelievably stressful at the time, she picked it up quickly and my job was relatively easy. Daniel, well, that was an entirely different story. Were they showing me signs of “readiness?” Eh, who knows. Probably not. But they were two-and-a-half and heading towards preschool, so it was time and we did it.

There was less than a year that I was free from the world of diaper changes, and then came Ellie. Honestly? Diapers aren’t that bad. I don’t mind changing them, it’s not really that much of a hassle in the grand scheme of things. Sure, eventually I’ll have to potty-train Ellie, but I’ve been down this road before, and seriously, what’s the rush?

Yeah. Try telling that to her.

I swear, every third word out of her mouth is “potty,” “bathroom,” “diaper,” or “change.” For a long time, I’ve been sticking my fingers in my ears and singing LA LA LA LA because I just cannot add potty training to my list of daily responsibilities. And honestly, I think she originally thought “potty” meant “get down from the table,” because that’s what her brother and sister always did at dinner when they used that word.

But I think I underestimate this clever little girl of mine. I am too quick to assume she doesn’t get it. I’m starting to fear that, in this case, she actually might. She might be all but freaking BEGGING me to potty train her. And sure, yes, it would be lovely to cancel that particular Subscribe-and-Save order on Amazon. Having a diaper-free house would be quite something. But the process of getting there? Always having a change of clothes and a portable potty and having to DROP EVERYTHING as soon as she says the word? Oh, I could really do without that part.

But it’s getting to the point that I can’t deny it. I can’t pretend I don’t hear her saying it ALL THE TIME. It’s time to give it a go and see if she’s actually… ready. So now I have to go to Target and get a damn potty, and a few packages of cheap underwear that will be absurdly large on her teeny-tiny, maybe-she’ll-grow-into-size-2T-when-she’s-5 little bum.

Ugh. It’s a good thing she’s cute.

Comments (8)

Categories : Child Development, Milestones, Toddlers

Tags : potty training

Two

By Goddess in Progress · Comments (12)· February 27th, 2013

My little one, she is two.

Oh, poor third kid. There was no fanfare made about this birthday, whatsoever. Hell, I couldn’t even blog about it in a timely fashion – she turned two on Monday, and here it is, Wednesday. LAME. Coming at the tail end of the big kids’ school vacation week, and on the same day as M and I had a meeting to get the results of Daniel’s neuropsych evaluation, I didn’t even manage to make a cake. Thankfully, of course, she could care less. She’s too little to understand birthdays, and she doesn’t eat cake, anyways. She was happy enough to get serenaded with “Happy Birthday” about a hundred times.

She is a riot at two. As you can hear in the above video, one of her favorite new words is “funny!” Any time something makes her laugh, she scrunches up her shoulders and says “funny!” She has also, just in the last couple of days, started adding the word “I” to things. So instead of shrieking “did it!” when she accomplishes something, it’s “I did it!” (Or, in her actual prononciation, “hi did it!”) When she stumbles and falls, it’s “hi’m fine.”

Every time she sees my camera or my phone, she yells “cheese! picture!” But being a busy girl, I’m lucky to get one in ten to be even roughly in focus as she runs out of frame. And there are no recent pictures without some combination of messy hair, messy face, or a new bruise from running into lord-knows-what.

She loves to draw, and constantly requests I draw a kitty (a skill I needed to remember from when her brother and sister requested the same thing at her age). She is completely obsessed with the dog, a feeling that is far from mutual.

Oh, she can throw a screaming tantrum if she wants something and I won’t let her have it. That’s what two is for, right?

Happy birthday, funny girl. We’re so glad you’re here.

Comments (12)

Categories : Birthdays, Toddlers

What a day this has been

By Goddess in Progress · Comments (23)· February 13th, 2013

Ellie and I headed downtown after dropping the kids off this morning. We had an appointment at Children’s Hospital, which she is unfortunately old enough to recognize and remember.

Ellie’s feeding therapist wanted her to have a swallow study to make sure she isn’t aspirating when she swallows liquids. Her last study was when she was only one month old, at which point she was still having a small amount of aspiration of thin liquids. That day in March 2011 was the last time she took anywhere near a full feed by mouth. (Which she promptly puked up in spectacular fashion – aspiration was only one of our problems.)

Anyways, we have no reason to believe she is still aspirating now. She drinks small amounts of water from sippy cups without a problem and has never had pneumonia (a tell-tale sign of a kid who aspirates). But we wanted to be sure, so there we were.

Ellie did exactly as I thought she would. She was slightly anxious in the waiting room, but completely lost her mind as soon as we were brought down to the radiology suite. She screamed like she was being stabbed, and was only momentarily calmed by iPads, bubbles, and songs. But in the end, I got her to calm down enough to take a few sips from her cup (before she realized the barium was nasty), and they saw five or six successful swallows.

While I was pretty sure this was going to be the outcome, it feels really good to have this particular box checked off for the time being. Our issues with swallowing and eating are far from over, but at least for now I can definitively say “she does not aspirate.” Huzzah.

BUT WAIT, THERE’S MORE.

At 2:30, Ellie had her usual physical therapy appointment. For the vast majority of her two years, we have had PT with our beloved Janet every week. We’ve had ups and downs and plateaus, but it seemed like once she started crawling, it has been a really steady improvement.

This afternoon, we watched her all-but-run from activity to activity. She scooted, she climbed, she squatted, she walked up and down stairs (with help). Give her two hands to hold and she can jump and clear both feet off the ground.

We had started to spread our appointments out to every two or three weeks, and talked about going to once a month. But as we watched this crazy almost-two-year-old careen around the room, we were hard pressed to say why. Does she have totally typical agility, balance, as strength for a two-year-old? Not quite. But nothing she needs to work on is going to take anything other than time and practice. Not specific exercises and tasks, just running around like the little kid she is.

Ellie graduated from physical therapy today.

Sure, if she stalls in her development or I get worried about something, we can always go back. But as of right now, we are done with PT.

When you have a kid with a big asterisk next to her name like Ellie, seeing so many doctors and specialists, the numbers just seem to multiply. Someone always wants to suggest you see ANOTHER doctor. Audiology! Endocrine! Is there any department you haven’t visited yet? Get in there! I’ve started a Google Doc to keep track of everyone because I can no longer remember all of their names.

So, to be able to cross one or two things off of the list, or at least tuck them away on a shelf for the time being, is such a lovely turn of events that I burst into tears on the way home.

Comments (23)

Categories : Hospital, Toddlers

Tags : aspiration, physical therapy, swallow study

Without an audience

By Goddess in Progress · Comments (9)· January 17th, 2013

I have remarked on many occasions that I am a much better parent when there are witnesses.

Oh, come on, you totally know what I’m talking about. If there are other people around, I am a lot less likely to lose my shit and yell in frustration. I’m much more likely to do a quiet-but-firm talking-to or low-drama time out. I’m not a completely different person by any means, and it’s not like I’ve never flipped out in a public place. But overall, I probably do a better job in front of other adults than if I’m at home by myself and totally at the end of my rope. Yeah, I’m just going to be grateful that there’s no video playback of some of those moments.

The major exception to that is when I’m doing feeding therapy practice with Ellie. It is so, SO much worse when there are other people around.

I’m not sure if I can adequately explain how stressful this is for me. On a particularly good day, I can get her to consume about 1/4 cup of various baby food purees and yogurt. It takes a solid 45 minutes, a fully-loaded iPad to keep her occupied, and every drop of patience and encouragement and determination I can muster. I have to stay really upbeat, because getting frustrated and trying to force something that isn’t working will only set us back. Even when it has gone relatively well, I finish and feel like my blood pressure is through the roof and I am completely spent. All I want to do is retire dramatically to a chaise lounge.

And that is when I have the entire quiet house to myself. Throw in a pair of five-year-olds with their never-ending stream of questions and complaints, and I barely last five minutes of feeding therapy before I throw up my hands in defeat and freak out on everyone. I can’t even handle doing it with M around. He’s trying to be encouraging and helpful, and it’s all I can do not to scream at him to SHUT UP AND JUST LEAVE IT ALONE.

Of course, this turns into a whole vicious cycle. Feeding therapy is hard and stressful, so I put it off and avoid it, so it stays hard and stressful. I need to get more disciplined about finding a time that I can do it every day, which should ultimately make it more routine and a little less stressful (not to mention more actual progress for Ellie).

But UGH. Sometimes I just need to talk about how much it blows. It really, really blows.

Comments (9)

Categories : Toddlers

Tags : feeding therapy

She’s not a part of your system

By Goddess in Progress · Comments (2)· January 15th, 2013

It’s only in the last couple of months that Ellie will actually sit and play with a toy or a book.

Her fine motor skills are fairly delayed for her age, and between that and whatever other factors, she had very little interest in holding onto much other than her lovey until pretty recently. Those links/rings that every baby loves? She could care less. It’s not that she was totally unable, but for whatever reason, she went through a really long phase of throwing EVERYTHING behind her or onto the ground. Almost from the very moment she picked it up, it got thrown. Couldn’t get her to hold onto something to play with it. It all got chucked.

Thankfully, that’s changing and she will now play with puzzles and draw with markers and other good fine motor stuff. But still, if she’s all done with something, it gets tossed. And every time she does, M and I look at each other and say, “she’s not a part of your system.”

Are you a Lonely Island fan? Cracks us up, and we think of this video every time Ellie tosses something overboard. (Mild language warning, probably not best for when the kids are around.)

Comments (2)

Categories : Behavior, Toddlers

She’s making a statement

By Goddess in Progress · Comments (1)· November 29th, 2012

Skinny jeans and Chucks.

My 21-month-old is

a tiny hipster.

Comments (1)

Categories : Toddlers

Tags : haiku

Let’s change everything

By Goddess in Progress · Comments (4)· November 26th, 2012

Hooray for progress.

And yet, it makes everything

more complicated.

Ellie has made, by our standards, some really great progress in the last few months with our new feeding therapist. Back in August, she was just barely starting to show interest in bringing foods anywhere near her mouth. Now, if she’s in a good mood (and adequately entertained with toys, and the adult in question is feeling particularly persistent), we can get anywhere from 1 to 3 ounces of actual food into her. I’m talking yogurt and thicker baby food purees, not a hamburger, but still. It’s a big step forward.

But now, it’s time to get serious. Up to this point, a lot of what we’ve been doing has been just experimenting with flavors and textures and the simple sensation of having something in her mouth. In a sense, no pressure. Just playing around. But now that she will actually consume a measurable amount of food by mouth, we need to start pushing to see what she’s capable of.

The first order of business is to reduce her daily intake of formula. Not just so that she won’t be over-fed with the additional calories of yogurt, but in the hopes of getting her to experience real hunger for the first time since she was a newborn, further hoping that it will motivate her to eat more readily. But it’s not just an even reduction across the board – if we are taking 100 calories of formula away, we’re going to take most or all of that away from the feeding prior to any attempt at feeding her by mouth. Again, in the hopes that she’d get good and hungry. That adds an element of planning ahead that is a little tricky in our current modus operandi, but OK.

In the meantime, the nutritionist wants us to switch to a different type of formula now that she’s older. That’s fine, but the new formula (really, just Pediasure) is much more calorically dense than the old one. Which means she requires a smaller volume to get the same number of calories per day. That’s also fine, except that it means formula intake alone is no longer enough to keep her adequately hydrated, so I’ll also have to give her supplemental water – through the tube, because she doesn’t really drink it yet. Yet another thing to keep track of.

Oh, and the actual “feeding” part of feeding therapy is no walk in the park, believe me. It’s incredibly slow and enormously frustrating for me. Ellie doesn’t much love it, and some days she’s especially toddler-rific and just ain’t having it. It requires a lot of distraction and entertainment and coaxing, and even then, I can never manage to get as much into her as the feeding therapist does. So, you know, no pressure to get those calories into her that you’re taking away from her formula or anything.

I said to M, this is like potty training on a much larger scale. Yeah, it’s nicer and easier to have a potty-trained kid than to have one in diapers. But the PROCESS of getting from point A to point B… wow, does that suck, and makes you (temporarily) wistful for the easy days of diapers. Same thing here, but it’s going to be a lot harder and take a hell of a lot longer. Yes, obviously I want Ellie to get to the point of being able to eat and drink everything she needs without the tube. But the fact is, the current usage of the tube is actually pretty easy. We’ve got it figured out, it fits into our lives. This in-between, in-progress phase? Exciting and all, but holy crap is it going to suck for a while.

(And, by “a while,” I’m guessing probably two years, if all goes well. In case you were wondering what kind of pace we’re talking about, here.)

I’m still waiting to get the new formula from our medical supply place. Nothing about that is ever easy – the complex-care pediatrician has to check the nutritionist’s notes and call in the “prescription” before I can order a month’s worth. But once it’s here, I think I will literally have to write out our daily feeding regime and have that thing laminated and posted in the kitchen. No more auto-pilot for me.

Comments (4)

Categories : Child Development, Feeding, Toddlers

Tags : feeding therapy, g-tube, haiku

Another day, another specialist

By Goddess in Progress · Comments (5)· November 12th, 2012

Nine health providers,

eight days. No wonder Ellie

hates the exam rooms.

While Ellie has seen a wide variety of doctors, the majority of them only want to see her once or twice a year. This, apparently, is one of those weeks in which a whole bunch of those “every now and then” visits all converge. From last Thursday through this Friday, we have seen and will see: a pulmonologist, our primary pediatrician, an ear/nose/throat specialist, an audiologist, a neurologist, and a nutritionist. That’s in addition to her weekly appointments with a physical therapist, a developmental specialist, and an occupational therapist. And we are NOT seeing the gastroenterologist, the complex care pediatrician, the surgeon, or the geneticist.

Is it any wonder that I feel like I’m barely keeping up?

Comments (5)

Categories : Hospital, Toddlers

Tags : doctor appointments, haiku

I’m not the only one who hates the hospital

By Goddess in Progress · Comments (5)· November 8th, 2012

She knew right away.

Was it the font on the signs?

The familiar smells?

Ellie had a doctor’s appointment today. It was at one of the hospital’s satellite locations, one we do not visit frequently, but she was agitated from the moment we walked in the door. It was as though she recognized the hospital’s branding on the signage, or sensed the presence of blood pressure cuffs. When the poor physician’s assistant called us in to take her vital signs, she had a complete meltdown. Not just grumpy, not a temper tantrum. Crazy, scared, breath-holding sobs. It took forever to get a decent reading on her oxygen levels because she kept holding her breath. And this was just weight and height, nothing remotely painful. I don’t even want to think how ugly it’s going to be when I take her for a flu shot tomorrow.

A few weeks ago, she had another sleep study as follow-up to the disastrous one from the summer. I took her this time, and she was not remotely pleased. Screamed bloody murder every time the nurse came into the room. It was a fitful night for both of us, but clearly it went better than the first one, since they actually let us leave. (You know I all but ran out the door before anyone could stop us.) The people who administer the study are not really at liberty to discuss the results, and I knew better than to ask. As soon as they said it was done and we could leave, we were GONE. When friends asked me how it went, I simply said, “no news is good enough news.”

Today’s appointment was with one of the doctors in the sleep discorders clinic, and I am happy to report that it was, in fact, good enough news. Her average oxygen saturation was a bit lower than normal, but not concerning. When she was really deeply asleep, she had a couple of brief pauses in her breathing, in which the oxygen momentarily dropped into the 70s and then jumped right back up on its own. (For reference, they really want you to be in the mid-to-high 90s. During her first sleep study, she repeatedly dropped into the THIRTIES and didn’t immediately come back up. Scary, scary stuff.) Anyways, the doctor didn’t feel as though any of this was terribly concerning, nor was it surprising in a kid who already has a history of low muscle tone. He said we could do a touch of oxygen at night if we wanted to, but he absolutely did not think it was necessary or that she would come to any harm if we didn’t. (We’ll pass for now, thanks.)

When you have a kid like Ellie, who always seems to have an asterisk next to her name when it comes to doctors, it’s really nice to have a short, pleasant vist. One in which someone says, “yep, there was a problem before, but it looks like it’s fixed. See ya later!”

We tried not to skip on our way back to the car.

Comments (5)

Categories : Hospital, Toddlers

Tags : haiku, low tone, Sleep study