The Baconator.

We don't go out to eat with the kids much. We might go to a family friendly restaurant 2-4 times in a calendar year. We generally prefer restaurants with an outside deck and play area, so KayTar isn't stuck at the table with us. Taking a food hater with a variety of sensory issues out to a noisy crowded restaurant to watch people eat can be problematic, so imagine my surprise when KayTar became exceedingly excited while passing an IHOP restaurant earlier in the week. "There is an IHOP! IHOP is my favorite restaurant!" I asked her, "Do you know what kind of food they have there?" She said no and I told her, "Bacon and sausage and toast!" which are all things on her acceptable list. This information sent her over the moon! I told Josh about it and we decided to give it a shot. KayTar has been looking forward to it all week and surprisingly, it was a success!

She told the server (who we happened to know) that we needed a table for four and when he asked is a booth would be alright, she said, with a bit an attitude, "Oh, I guess that will be fine." When it was time to order, she settled on a Dr. Pepper and a side of bacon (she specified "the tall kind" so she didn't end up with bacon bits). 2 pieces. She waited patiently for her food. She used the syrup (which she likes to pronounce "SY-rup") as a puppet and asked everyone at the table questions, for example, "Hi, my name is Syrup! Do you want to eat me?". She ate both pieces of bacon and then ordered two more, which she also ate. She was delightful and well-mannered, minus one small screaming outburst when she realized I had borrowed her fork without permission (in my defense, I thought it was Josh's fork). The highlight was that we went out to dinner and she ATE. Miracles do happen.

She's been eating well (for her) lately. This morning she had a sausage patty and a small powdered sugar donut for breakfast. At lunchtime, she had a serving of chips. For dinner, she had the four pieces of bacon at IHOP. The foods she will accept on a semi-regular basis are:

white bread
croutons ("those squares with the flavor grass on them")
sandwich crackers
chips
jarred baby food veggies (mostly peas)
patty sausage
bacon
vienna sausage
sandwich meat
sunbutter "ice cream" (we keep the sunbutter in the fridge)
french fries
chicken nuggets
homemade cupcakes and icing
shredded cheese
mashed potatoes
homemade guacamole
pepperoni
jerky
cold pizza (if we order a pizza, we have to put her slice in the freezer so it congeals)

It isn't a huge list or a healthy list, but it is a massive improvement. In addition to the expanded list, she is also accepting the foods on a more regular basis. Usually her school lunch consists of one the meats she likes, either chips or bread, and a baby food veggie. She usually eats a pretty good percentage of the food I send. She still isn't approaching anything near a typical four year old's eating schedule or diet, but she has been making steady progress. She still needs 3 tube feeds on an average eating day and 4 on a day she doesn't take anything by mouth, but she is enjoying the food she does eat a little bit more, I think. Most days she asks for a snack at least once, that in and of itself is significant. She's had many ups and downs in her sordid history with food, so I know this may or may not be a lasting improvement, but we're still glad to see her relationship with food evolving towards something that might one day be pleasant. For now, though, she has the freedom to eat what she wants when she wants it, and she is still getting all of the nutrients she needs. It is ideal and we could not be happier to see her thriving from the steady nutrition and also utilizing the freedom to explore the joys of eating at her own pace.

And the correct answer is...

"Kyla, just calm down and go with the flow already!"

TA DA! It was an easy one to figure out after all.

Yesterday, she ate at 11am, 3pm, 8pm, and 12am. This morning she had 4 ounces at 7am and 8 ounces at 11:20am. See? We're flowing. It will take a bit for it to solidify into somewhat of a normal routine, but as long as she is getting what she needs daily, the rest doesn't matter much. But you might be wondering, "Hey! Wasn't this whole tube thing just supposed to be supplemental anyway?"

You are correct! It was supposed to be supplemental! However, I think we underestimated just HOW MUCH KayTar dislikes eating and drinking. As much relief as we feel now that we know she is getting what she needs, I think it pales in comparison to the relief KayTar feels now that she is free from the work of eating and drinking.

The bottle has gone bye-bye. We weren't sure how it was going to happen, really. We didn't have a plan at all. In fact, the day we got home from the hospital, she asked for one and we gave it to her. She took a sip, handed it back and said, "NO!" And that was the last time she had a drink from the bottle. There was one day a week or so later where she caught sight of one and DEMANDED it, but I said, "Sorry, we're done with bottles!" and handed her a cup of Pediasure instead. She got mad and cried a little, then she rubbed her blanket on her face, calmed down and never asked for one again. She did not drink the Pediasure, though. We are offering sippy cups, open cups, straw cups...but she's not really into it, regardless of what they are filled with. She has a few sips per day and that is all really. Fair enough, kiddo.

As far as food goes, well, that hasn't changed much. Over the course of the day yesterday, she had two chicken nuggets, which was BY FAR the most food she's had in the 14 days since her surgery. She takes a bite of something when the desire for a bit of flavor overrides the general disdain for putting food into her mouth, I think. She might ask for a little bag of chips, but she takes one and leaves the rest. Or she says, "Mmmm! Nuggets! I love nuggets!" but she is perfectly happy only taking a little nibble from one. I'm going to go out on a limb and say, once again, that we made the right call with the tube business.

One day maybe, one glorious day, she'll decide eating is okay...she'll learn to enjoy it on her own terms. This tube will give her that freedom, we think. It separates the terrible chore from what might become enjoyment; a little of this flavor, a smidgen of that texture, the mouthwatering sensation from a delicious aroma. Most people don't understand this, I know. Some people might even think we've done her a disservice by separating the two, how will she ever eat on her own if she doesn't HAVE TO do it? But for KayTar, who somehow lacks the internal drive, the HAVE TO isn't a motivator, it never has been...we are hoping that one day, the WANT TO will take over.

Think about yourself for a moment, why do you eat? Sure, you eat because you feel hunger...but what do you choose to eat when you feel that hunger? Foods you ENJOY. If it was lunchtime and someone plopped some boiled bull testicles down in front of you, would you chow down or would you politely decline? This is how KayTar feels about eating, usually. We might as well be offering boiled testicles, rather than chicken and fries. But maybe, if you were really hungry, STARVING, you'd go ahead and eat...just to survive. But KayTar, she doesn't seem to feel that hunger, that starvation. The only way we knew she was having hypoglycemic spells was the dizziness. She never gave any other the indication. By the time my blood sugar dips so low that I'm dizzy, I am ravenous....not KayTar, though. The thought of food, getting it on her hands, letting it touch her lips, her tongue, her teeth...the thought of chewing and swallowing...it literally turns her stomach. She used to gag and vomit during almost every meal. We've come a long way from that, she is more assertive, she protects herself better, and she has even started to enjoy some things over time...but at the heart of it, she still feels that way about eating in general. It is an experience she prefers to avoid. And so our hope is this, that one day she might discover the joy of food, of eating...and after that, the nutrition will follow. In the meantime, though, we will continue to give her what we know she needs and we have no doubts that we've made the best decision possible for her.

PS: Sometimes when I discuss this stuff, I feel like I'm speaking a foreign language. Eating, the enjoyment and necessity of it, is so natural and ingrained for most of us that understanding how KayTar feels about all of it doesn't quite compute. We have industries built around humans and their great love of food, vast and varied cuisines, gastronomy even...our world revolves around mealtime. We have lunch breaks, family dinners. We go out to eat with others for companionship, for business. We invite people to our homes and cook for them, we have barbecues in the backyard. Holidays revolve around special meals, sitting around a large table and eating together. Food is a pillar in our culture. It is so contrary to think there are adults or children who don't adhere to these norms. When I talk about this, people often think more along the lines of picky preschooler asserting her independence, which makes the whole tube thing seem kind of insane. This is not that. I wrote this in hopes that is will make it all a little less difficult to understand from the outside.

Feeding disorders: When every meal is a scene from Fear Factor, but you never win $50,000.

Word Problem

Disclaimer: This is (mostly) rhetorical...unless you have some sort of epiphany, then by all means, bring it on!

KayTar needs to eat four times per day and intake a total of 32 ounces of Pediasure each day*. Her feeds should be as equally spaced as possible, to avoid overfilling or underfilling. While KayTar can eat while sleeping, either in the morning or at night, she cannot eat between the hours of 12-3pm or 5:30-9pm on Monday-Friday. Furthermore, she cannot eat between the hours of 7:30-9am on Tuesdays. At what times should KayTar eat?

Failed solutions to this problem:

The Saturday/Sunday solution of 10am, 2pm, 6pm, 10pm

9am, 1pm, 5pm, 9pm

7am, 11am, 3pm, 7pm

10am, 3pm, 7pm, 12am

8am, 12pm, 4pm, 8pm

And so on...

*She was having dizzy spells last week. Hello there hypoglycemia, nice to meet you! While she is used to drinking only 3 Pediasures per day, on good days, she was also eating 1-2 baby food jars and a serving of chips (another 200+ calories), so we had to add a fourth feed to the day for her.


Last week during on of the dizzy spells, she told me, "I'm flying away." This photo reminded me of that. (click to enlarge)

The Easy Button

I did something amazing last night.

I fed KayTar and gave her medications, after she was asleep.

Yes, that's right. My child ate and took medication while she was sleeping.

It was amazing.

She hit the wall yesterday afternoon. Her body was pained and exhausted and it culminated in a mega-breakdown. She was a sobbing miserable mess, so I took her to the bed and cuddled with her for a while. She curled into me, great big fetus style, her little knees pushing against my stomach and her head nuzzled in my chest, a ball of preschooler. She stayed there, still and quiet for a very long time. My poor little girl. I was almost certain I would be missing class again, staying home to lend her the comfort she so obviously needed in that moment, but she perked up in the nick of time. She told me I could go to school, Daddy would take care of her. She still wasn't her best and I decided to skip the lab portion of class, so I could get back to her quickly.

I got home around 7:30 and she was already asleep. Her little body was just worn out. Healing is hard work. We had a small problem, though, she needed her nightly dose of antibiotics and she hadn't "eaten" or had pain medication since around 3pm. Though we were concerned about waking her accidentally, we didn't want her to go without her medicine. We decided to give it a shot, at least try to give her the medications.

I gathered the supplies and sneaked in the bedroom.

I opened her port. Froze. Looked at her, motionless.

I hooked up the bolus tube. Froze. Looked at her. Still motionless.

I ran in her medications. Lortab, Amoxicillin, Miralax and water. She slept.

I shout-whispered to Josh, "Bring me a Pediasure!"

I ran in 2 ounces. She slept.

I waited a bit.

I ran in 2 ounces. She slept.

I flushed the line.

I disconnected the line. Froze. Watched her. Still sleeping.

I closed her port.

I zipped her footsie pajamas.

I kissed her head.

I sneaked back out.

Medication and nutrition in her sleep. Wow.

We discussed these things before the surgery. We made the decision to get the button for these very reasons; the ability to feed her when she felt too poorly to feed herself, the ability to keep her hydrated, the ability to be able to give her nutrition and fluids and medication while she slept...we discussed all of it. Though, somehow putting it into practice feels like an unexpected gift, each and every time. It had only been a week and already, it has done so much for her and for us.

[Would have been] Wordless Wednesday: The Blue Plate Special
It's what for breakfast...and lunch...and dinner...and midnight snack.

You'll Never Guess!

BubTar seems to be coming down with something again! If you're keeping track, that makes 1 week of healthiness for every 2 weeks of illness so far.

Week 1:
BubTar is absent for 1 day, but is sick through the weekend.

Week 2:
KayTar is absent for 4 days.

Week 3:
KayTar is absent for 1 day, not due to illness. It would have been 2 if Monday wasn't a holiday, though.

Hopefully it will be nothing. A cold, perhaps. A nice, soothing, run of the mill cold. Half of me thinks (read as: hopes) that will be the case. The other half is wondering if we should go ahead and start a pool for the next round of "Will My Child Urinate Today?" It also makes my insides buzz with a low level of anxiety, because truth be told, KayTar's intake is still way down and another hit of illness will flush it right down the toilet. Ah yes, all it takes is a runny nose to strike fear into my heart. I am so brave.

(side note: This weekend I was watching House and doing laundry. KayTar came in the room and was watching at it while chatting me up about something, presumably the fact that she really wants a WordGirl costume. There was a patient in a hospital bed thrashing about because she didn't want her blood drawn or something to that affect and KayTar said, "Oh, she is VERY brave. I am not brave anymore. I'm feeling BETTER! I don't need to go to the hospital anymore." Yes, my child thinks that brave and sick are synonyms because she only hears brave in terms of tests and trips to the hospital. Lovely.)

Anyway, back to my phobia of runny noses and KayTar's intake. Before she started school, when she was healthy, her intake looked like this:

Breakfast:
1 Pediasure

Lunch:
1 Pediasure or 8 oz of milk
possibly 1-2 baby foods

Dinner:
1-2 baby foods
sometimes a snack

Bedtime:
1 Pediasure

Even if she only had her Pediasures, that was roughly 700 calories. If it was a really good day and she ate everything, maybe she would hit 900 or 1000.

Now that she is in school, her intake looks like this:

Breakfast:
1/2 Pediasure

Lunch @ school:
1 serving of Pringles

Snack:
1/2 Pediasure

Dinner:
possibly 1-2 baby foods

If she only has the Pediasure, that is 237 calories. Add in the chips, that is 377. Plus the baby food if she eats it, add maybe another 100, so roughly 477 calories. 477! And 8 ounces of fluid? It isn't enough.

Part of the problem is that she is in school when she was previously napping. Naptime was when she had her lunchtime bottle. The other part of the problem is that now that she doesn't nap, she is too tired for her bedtime bottle. She just falls straight to sleep as soon as her head hits the pillow. While it has solved the problem of KayTar the Night Owl, who used to stay up with us until midnight, it has definitely created another problem with her nutrition. Consequently, because she is only getting 1 bottle of Pediasure per day, she is also only getting 1 dose of her Miralax per day. This weekend we came very close to having another fecal midwifery situation on our hands and those just are not pleasant for anyone.

So, BubTar is a little tiny bit sick, so little that I didn't even contemplate keeping him home, but here I am fighting the urge to pack our hospital bag already. Her intake is just so poor on a "good" day (yes, the so-called good deserves some air quotes, I think), even a slight infectious breeze is enough to do her in. We're still only getting 1 or 2 wet diapers from her a day and she is HEALTHY. Add in a little illness involving a sore throat or enough drainage to make her feel nauseous and there you have it, the scales have been tipped in an unfavorable direction. Ta-DA!

Usually I do some sort of wrappy-uppy thing at the end of these kind of posts, but I accidentally hit the publish button a second ago and now there is a timer in my head counting down exactly how long it takes someone to click over from their Reader to find this post in all of it's unfinished glory.(Is there some way to retrieve a post once you hit publish? This might be good to know.) The blinking numbers in my mind make it hard to come up with some sort of witty or intelligent summary sentence, so instead, LOOK! A REALLY CUTE KID!

PS: She's totally faking. Someone probably just said, "KayTar! Time to eat!" She's clever, but we're on to her.

So, my kid might need a feeding tube...

Well, I just dropped that bomb and promptly skittered away, didn't I?

It boils down to three things, really.

She is losing weight.

The weight loss is pretty self-explanatory. Her weight should be going upwards or at the very least, staying the same. It should not be going downwards. We shouldn't be back in the 20's, when we fought so hard to get into the 30's. Which brings us to Concern #2...

She hasn't changed her base level intake in over two years.

This one is a bit of a no-brainer, too. Two years ago, she was a lumpish little doll whose biggest activity was rolling around on the floor banging a couple blocks together or perhaps sitting up for a couple minutes, if she was feeling WILD. Now, she is a preschooler. She goes to school. She walks, talks, and plays. She tries to run and jump, albeit unsuccessfully, but trying is hard work, too. She has baby dolls to nurture and pretend food to cook. She has make-believe vacuuming to do, for goodness sakes! She simply MUST change dresses six times per day! She is very busy with all sorts of extremely important preschooler-type business, and her body needs fuel for these very important tasks, fuel in the form of NUTRIENTS, which she just might not be getting enough of. If she was getting enough, her weight (see Concern #1) would be going upwards, rather than downwards. Everyone expected her to begin to eat as she aged, but she hasn't. That is a problem in itself, and it is compounded by Concern #3...

She gets sick quite often and we get caught in the illness, dehydration, and occasional hospitalization cycle, complicated by ENDLESS rounds of everyone's favorite new game show "Will My Child Urinate Today?"

KayTar gets sick. A lot. KayTar stops eating. KayTar stops drinking. KayTar stops peeing. I spend every illness documenting intake/output and watching the clock to see if it is time to go to the hospital yet, helpless to do anything about the situation other than write about it ad nauseum and try to push fluids without appearing to care about the results at all. This is clearly failing, because when she finally peed yesterday, she exclaimed "Mooooom, guess what's in my diaper for YOU? PEE PEE!" I think my nonchalant cover has been effectively blown. She started school and will now be directly exposed to more illnesses, which might hurt her already tenuous-at-best balance. If she isn't getting enough on a good day, every time she gets sick and is getting little to nothing, it just increases the deficits.

When this came up the first time, I was really blindsided by it. It seemed to me that there was no way that this kiddo who CAN eat by mouth would need a surgical intervention. The truth is, CAN does not equal WILL or DOES SO RELIABLY, this I know. When it came up again in the feeding clinic appointment this week, especially in light of her illness and weight loss, it felt logical and appropriate. Subsequent conversations with the pediatrician were very much the same, rational and relevant. I will be honest and say I did feel a little twitch in my gut, a bit of emotional uprising to hear it confirmed by two of her doctors, but it wasn't strong enough to obscure the bigger picture. I've spoken with parents whose children have had feeding tubes, I've read medical studies, I've even watched videos of multiple surgeries and subsequent tube replacements. This is a strong possibility for KayTar, and I think I'm okay with it now. I think Josh is, too, actually, which is really saying something. He's not too fond of medical interventions. Watching her struggle to stay afloat in the midst of recent illnesses has been eye opening for us, and if this is what she needs to continue to thrive, then we are on board. No one is telling us we have to do it right now, but it does sound and feel like the time is approaching. Eight months ago the thought of it left me reeling, but today, looking at my gorgeous girl beaming from her first (belated) day of school, I know that we will do absolutely anything to keep her happy and healthy. If trying our very best isn't quite enough anymore, then we have to find a way to make our best even better. If a feeding tube can do that for her and for us, of course, we'll embrace it.

You really can't deny anything to a face like this.

In KayTar news...

I've been wanting to write lately. Thoughts spring to mind, but they are almost instantly replaced by things to do and places to be. I've mostly wanted to write about KayTar, where we are, where she is, because really and truly that's what I created this space to document and she's been quite amazing lately. So because she seems to be totally zonked from her camp experience today (the Zoomobile! Build-A-Bear-esque animal making! art time! play time!) and because I was able to do my homework while she was in camp, I find myself with maybe just enough time to eek out a post of some sort. I'm not really sure where to begin anymore. It seems like it has been months and miles since I've updated on her development. Let's go with categories.

Fine motor: She's always had a knack for fine motor...one of the only non-worrisome areas we have! She is still functioning at age level and is doing cute things like giving her hair style a bit of a kick with a small section of bangs. A couple days before I gave my speech, KayTar brought me her kiddie scissors and said, "Cut hair?" and I said, "No, only paper." And then I ran an errand that evening, came home, and Josh said, "KayTar left you a present on your desk." It was her hair. She decided the scissors were in fact useful for hair cutting and wanted to prove it I suppose.

Gross Motor: She still can't run. She can climb up very narrow staircases (like at the playground) as long as she can hold on with both hands and help pull herself up. She doesn't alternate legs and she can't do it free-handed or one-handed. She can't jump and clear both feet and land again, but she can jump from the side of the pool into the water. She has no fear when it comes to the water. She'll even free fall backwards into the pool. Unlike most people, she doesn't get that startle instinct where you sort of twitch and try to catch yourself...she just falls right back. But she knows she has to say "Check me!" and wait before she is allowed to do the backward falls. Her gait is still wide-based and she is a bit unsteady.

Verbal: This is the big one. She's gone from almost entirely scripted speech to almost entirely spontaneous speech. She still does some scripting, especially when it comes to pretend play. For example, she sat for a very long time the other day repeating, "First you squeeze the lemons, then you add the sugar. Not too much, just enough. Very refreshing." over and over and over and over (it is from Max and Ruby). But I can't even find the words for the way her speech has transformed. It is really amazing. After camp, she tells me about her day. I can ask her questions and she answers them ("What color was the snake?" "Brown." or "Which animal did you like the most?" "The bird." or "What is your frog's name?" "Topo."). She still can't really grasp the question, "Why?" and struggles with "Who?" at times, too. She knows that if a why-question is answered, the answer should start with "Because..." but she doesn't understand what is supposed to come next. Her speech isn't without its quirks and her understanding isn't without its gaps, but the size of her vocabulary is huge now and the way her understanding level and amount of spontaneous and purposeful speech have increased is miraculous.

Social-Emotional: Oh. my. goodness. The kid is SUCH an extrovert. From her timid, sensory overloaded start in life, I never would have imagined she'd turn into this kid...this never met a stranger, game for anything other than eating, loves the stage and give me that microphone kind of kid. At both her camps, EVERYONE knows KayTar. And everyone seems to love KayTar. I have people stop me all the time and say things like, "I wish she was in my class!" or "KayTar is such a joy to have around!" or "She's so enthusiastic!". As apprehensive as I was about sending her off on her own and her upcoming transition to Pre-K, I am 100% certain there will be no issues whatsoever. She cries on Saturday and Sunday morning when she finds out she isn't going to camp. She has made friends in her camps and knows their names. She has a little boyfriend. Last Friday during the final song at the recital, her little boyfriend grabbed her by the hands and started dancing around with her. It was adorable. She's really enjoying herself.

Eating: Okay, so this isn't normally a developmental category...but we aren't normal, are we? Eating. The one thing that never seems to change around here. When I look at her food charts from TWO YEARS AGO they are not any different from food charts from the present. Except maybe, she ate better at back then, 6 jars on an average day then, 4 jars on an EXCELLENT day now. Every day for lunch, I send her a bag of Sunchips and two jars of food. Most days she eats the Sunchips (or opens the bag, because it doesn't come back home) and on really, really good days, she eats 1 jar of food, too. She hasn't eaten anything (other than a handful of Cheez-Its) for the past two days (and Pediasure, always Pediasure...the nutritional liquid gold that is squeezed from our wallets thrice weekly). She also hasn't had an episode in 63 days (this is probably me jinxing myself) so she might be gearing up for that and it has caused the eating to stop again. Who knows. In summary, Pediasure good. Eating, who needs it?

So there you have it. The latest on KayTar.

Almost a good idea

The genius that was the food chart has been met with a lackluster response. She was thrilled to see a chart with her photo and special nickname on it, but after reading through it once, she was done. Every time I asked her if she wants a sticker, she answers with a heartfelt, "NO!" Unfortunately, this seems to have spilled over onto the potty chart, too. I have tainted her love of charts by including her Kryptonite, food. Can't win for losing.

But, and this is a big important but, she seems to have come around regardless. She has been accepting Pediasure for two days, which is coincidentally timed with the advent of the chart, but completely unrelated because the only thing the chart elicits is shouts of no. Yesterday she hit a caloric record! 1266 calories in a single day! She had 3 Pediasures, 2 pieces of Dominos thin crust pizza, and a serving of potato chips to accomplish this. Healthy? Meh. Hearty? Yes.

We had her ARD meeting on Thursday and it went well. I went into it with some reservations, I had been called earlier in the week to informed that they were not going to go along with the initial placement recommendations (4 day/3 hour inclusion class). They were uncomfortable with her being in an environment without a nurse present, because of the episodes, and were going to place her in the 5 day/3 hour special education preschool class. KayTar needs appropriate peer models, and I wasn't exactly comfortable trading in the certain benefits of that environment for the possible benefits of having a nurse available. Although, it turned out that although she will be largely in the special education class, she will still spend a good amount of time in a regular education class for inclusion, so I am pleased. I'm also happy to say that regardless of the horror stories I've heard, our transition to the district has been really, really pleasant. Everyone we've been in contact with genuinely wants to see KayTar placed appropriately and have the services that she needs. And for that, I am very, very thankful.

Fingers crossed

Last night, after a particularly panic-inducing thought process about who would take care of the kids if we both died suddenly (which was compounded by KayTar's eating situation and her ARD meeting today and the processes I am going through to get her into therapies and on insurance and all the other little things which are maddening and yet I know how to handle), I had an epiphany.

FOOD CHART.

It is working for potty training, right?

So here is the plan, I make a chart with labeled slots that she can read on her own, for example:

Chocolate milk (Pediasure)
Baby Food
Baby Food
Chocolate Milk
Baby Food
Snack
Chocolate milk
Baby Food
Baby Food

And send her over to check it several times a day and ask her if she wants to have one and earn a sticker. If she eats and drinks it all, she'll be doing pretty well nutritionally from what I estimate, although I'm still waiting on the exact numbers.

I hope it will give her a bit of control, which she seems to crave, and a bit of incentive, which she seems to like. We can handle it as casually as this potty training thing, hopefully taking a bit of the underlying struggle away.

Maybe. Maybe not.

But it can't hurt to try, can it?

Hiding behind her "baby" which is a straight from the freezer lunch cooler that she rocks and holds and cuddles without ever realizing it is FREEZING! I have to limit the time she can spend with the "baby" because it makes her skin so cold. My adorably weird little kid.

Tail chasing

Round and round.

We've done this all before.

Over and over.

I've said this all before.

You'd think I'd be out of things to say on the subject, worried all my worries away by now. But you'd be wrong.

I feel the worry build, buzzing inside me like an electric current.

KayTar's given up the Pediasure. Today is actually day 6 of the Pediasure strike. And she is largely refusing milk too, though on a good day we can get 8 ounces of milk in, but nothing is certain. And you know, there is the long standing on again off again food strike. What can I say? The girl is nothing if not committed.

On Day 1, I thought, this is odd.

On Day 2, I mentioned it casually to the pediatrician during BubTar's well check, hoping the mere mention of it would change things.

On Day 3, I started tracking her intake again.

On Day 4, I tried to figure out the caloric value of 7 french fries and one bite of lunch meat.

On Day 5, Josh and I discussed it over our anniversary dinner.

On Day 6, I wrote this post.

If you remember, Pediasure is the only thing that stands between her and something a bit more drastic. Pediasure is where she gets the majority of her calories and nutrients. Pediasure is where she gets most of her hydration. Pediasure is also where she gets her Miralax doses, without which her stool backs up in a very, very unpleasant manner.

Thankfully, she is not shunning water, although she isn't drinking it as heartily as she once drank her Pediasure. It might not be calories, but it is fluid. And we can put Miralax in it. Unfortunately, when she used to drink an entire bottle of Pediasure and get all of her Miralax in a timely fashion and exact dosage, now we never know how much she will be willing to drink and we have to put Miralax in everything, just hoping enough gets into her to keep things moving. Things came to a standstill on Day 3, but we seem to be getting things going again.

The delicate balance is just too delicate without Pediasure. With Pediasure, I trained myself not to care. To relax. Her weight was good. She was getting her calories. She was getting her fluids. She was getting her medication. Everything else was just gravy. Now everything counts. I want her to eat. I need her to eat. When she says no, I want to engage, convince her it is a good idea. This helps nothing, I know, so I don't. But my insides are screaming, JUST ONE JAR OF FOOD! PLEASE DRINK THE PEDIASURE! PLEASE! YOU HAVE TO DRINK! EAT IT! But I don't say it. If I turn it into a battle of wills, there is no question who will win. She's winning already.

I asked the pediatrician for updated nutritional requirements, so I can see just how far off the mark she is, I'll get those later this week. Based on estimations, I'd say she's getting about 1/2 of her necessary calories, maybe hitting her minimum resting expenditure on average. It's not great, but it isn't as terrible as it could be, for sure. Even so, I just can't help but think about the possibilities, about what might happen if this becomes a long term issue, about how she is still uninsured.

Josh and I talk about it like it can be fixed. Maybe if we just... How about we try... It is helpful to think things can be fixed, if we just find the right way to approach them, but in the end, after we talk it up one side and down the other, we realize...it isn't fixable. It is up to KayTar. We know this all along, of course. We just pretend not to.

Every night before bed, we give her a bottle of Pediasure, which she promptly sends back to the kitchen, "Not THIS chocolate milk. Not CHOCOLATE MILK. Not this." She calls Pediasure chocolate milk, even though it is vanilla flavored and she hates all other flavors, especially chocolate. We bring her plain milk, and she says, "Not THIS milk. Not MILK. Not this." And we bring her water. This is acceptable. And we are reminded once again that it is up to her, that is always has been up to her, and that is what makes it all so difficult.

I never thought

I'd be so happy about this.

Today, KayTar ate:

1 YoBaby
2 Stage 2 Sweet Potatoes

I remember a time when I was so tired of the darn baby food. All I wanted was for that endless stage to be over, but I always thought that once she was off the baby food, she's move on to real food. That clearly has not been the case. We've tried many times to reintroduce baby food, only to be rebuffed. Not today, though. SHE ATE IT! I am so glad the baby food is back. She had VEGETABLES! For the first time in months! HALLELUJAH!

Maybe it has something to do with the kicky boots?



I think so.

(Today is the final portion of the wee girl's autism evaluation, wish her luck!)

Where I'm not.

This morning, I'm supposed to be at an appointment with KayTar's feeding disorder specialist.

Guess what?

I'M NOT.

Why?

No insurance.

Like I said this weekend, there is a facility fee (RENT TO SIT THERE!) of $120 for a 1-2 hour appointment, most of which is not being spent actually seeing a doctor. On top of that, there is also a physicians fee of between $90-150, since we are returning patients. If we were new? It would be $200-300 to see the doctor. If the doctor were to choose to run tests? We're looking at another $200-$450.

So yeah. We rescheduled for the first available, JULY. Hopefully we'll be insured by then.

I rescheduled, not because she doesn't need it. Oh, how she needs it. But because financially it isn't a wise move and I know that in 3 months, we'll be in this very same boat anyway. Her weight is maintaining, so it isn't urgent. Pediasure suits her just fine. But if we ever want to have hope of getting past this, KayTar will need to see this specialist AND restart her OT. Neither is possible until we are insured.

Yesterday she ate:

One bite of chicken
One Oreo inside (just the cream)
Two fries
Three bites of guacamole

Every day seems to be variations of the same. Chips are usually a hit, we can usually get her to eat a serving of chips a day, but nothing is for sure. And even so, CHIPS? As a sole food? Not good. Even foods she really enjoys, she won't eat reliably. She eats something really well once, and it is a week or two or four before she eats it like that again. We've been treading these waters for 3 months now, and honestly, even with the appetite stimulant, there is no end in sight.

I'm so very thankful for Pediasure and her trusty bottles, because without that magical combination buoying her weight and health, we'd be in much more serious territory...maybe contemplating things like surgery at a time when we have no insurance. So for that, I am thankful. I'm thankful we are only having to decide against NEEDED treatment, rather than having to decide against CRITICAL treatment. But honestly? No one should ever have to choose between their health and their finances in any way, big or small. Sadly, it happens thousands of times every day right here in the wealthiest country on earth. And still, as a society, we approve of this, we think of health as a privilege, as something only the wealthy or insured deserve...that if someone is neither of those, they should just try harder. America, the land where anyone can pull themselves up by the bootstraps, where if you catch a tough break it is no one's fault but your own. America, where it can't be the system that is broken...no, it must be the people that are broken.

Photographic summary of KayTar's relationship with food. Entitled "How This Pains Me".

My Magical Pharmacist

Two weeks ago, when I spoke with the pediatrician about the unfortunate tubing possibility, she suggested I try to locate a good compounding pharmacy that can make KayTar's appetite stimulant in an alternate format. Traditional pharmacies only distribute medications in the forms that are offered by the pharmaceutical companies, which means most medications only come in pill, chewable, and liquid forms...all oral. There are a very limited amount of medications that come in suppository form and nearly all are for sedation or nausea relief, but even those are limited. For KayTar, who refuses ALL oral medications, it means that for antibiotics, we are limited to getting her a Bicillin shot each time she has a bacterial infection. For pain and fever relief, the only option available is FeverAll acetaminophen suppositories, which if you have children you know it doesn't work as well as ibuprofen does, especially for high fevers which KayTar has a fondness for. As far as cough and cold, we can't give her anything at all, and she frequently has respiratory viruses that cause such intense coughing that she vomits from it. As far as her appetite stimulant, it only comes in an oral format, which is why we had to look outside the box for help.

I called around and found a pharmacy not far from our pediatrician and hospital, which is roughly 45 minutes to 1.5 hours from us, depending on traffic. I'm out there quite often, so it really isn't out of our way. I can drive there in my sleep by now. I asked if they could make her appetite stimulant into a suppository and they said yes, the pediatrician faxed the order in, and it was ready the next day. When I picked it up, the pharmacist said, "You know, we can make medications into transdermal gels, too. It is less intrusive than these are." He went on to tell me it is frequently done with Zofran and can be done with just about any medication. KayTar takes acetaminophen suppositories for her episodes, because it is all the pain relief we can get in the proper form, and she takes phenergan suppositories also due to the available forms. But now, this pharmacy can make ibuprofen and Zofran into transdermal gels to be applied to her wrist during an episode, and we never have to physically disturb her. It was like the clouds parted and the angels sang. I almost kissed the man. It was a heavenly moment. We have an entire new world open to us now, a world where KayTar can get any medication she needs and we never have to get it close to her mouth. It is amazing and I wish we had known about it sooner. I am thrilled! The downside is that they don't take insurance up front, you have to file a claim to be reimbursed. However, the up front cost is minimal for the service they provide. We got a month of KayTar's appetite stimulant for roughly $30. Ask me if it is worth it. Because it so is. If you have trouble getting your child or infant to take medications, I highly recommend it. They can also neutralize the bitterness of medications, unlike Walgreens or the like that just add an additional flavor over the top. They can make gummie bears or lollipops. They can do just about anything with these medications.

As for how KayTar is doing on the medication? It is making a difference. Not such a difference that we can stop Pediasure, but she is desiring to eat now, almost daily. Most days she still refuses to eat until the evening...but then she might take two jars, or a jar and a yogurt, or a yogurt and chips. She ate like a hog (okay, for HER) on Monday...1 serving of chips, 2 meat circles from her brother's lunchable, 1 Oreo, 2 jars of food. It was amazing, not only because she ate, but because of WHAT she ate. She's NEVER touched that sort of meat before this weekend. And Oreos are a no-no because of the cream inside, but she chowed down on that sucker. We are still letting her take the lead, but it doesn't feel like such a crisis, because I know most days, eventually she'll eat something...and even if she doesn't, SHE IS FINE. We saw her ECI nutritionist for the last time Monday and the squirt has finally gained! She is 29 pounds now, finally, after not gaining an ounce in what feels like forever. I've finally breathed that sigh of relief...I know that even without the food, she is okay. The eating is just icing on the cake (without all that pesky gagging). I'm so glad we found a pharmacy that enables us to get this medication into her. Surprisingly, she has no qualms about getting her twice daily "bummies" as we call them. She says "Bummies go ight hee-yah ina diaper." I think it is so strange that she prefers that to swallowing a bit of medication, but then, she's KayTar, so it makes sense. I'd love to peek inside that little brain of hers and experience this world the way she does. It would be an eye opening experience for sure. Knowing she processes things differently is one thing, but to be able to experience it? That would be amazing. Maybe one day the scientific community will be able to simulate what it is like for these sorts of kiddos, so we can all really understand what it is like to walk a mile in their shoes. I'd love to know.

Yum!

Here we go

Off to the Big Evaluation. I am so nervous. But hey, it is taking my mind off the food situation, so that's a plus, right?

Speaking of the food (oh God, here I go) yesterday she ate 3 shoestring potato bits and I am okay with it. No really, I sort of am. I just took a deep breath and let it go. 3 Pediasures, 1 milk, 3 teeny shoestring potatoes, and I, mostly did not care. So it was a good day, except for when I nearly panicked while grocery shopping. My thoughts looked something like this:

Oh! I'll buy [all this crap] and maybe she will eat!

Kyla, she WON'T eat and you're just going to be wasting money.

But what if she WILL eat, but I buy the wrong things and now she WON'T eat?

Kyla, don't do this.

[insert chest tightening up here] And then I put extra Pediasure in the cart decided to go stare at the dairy case, because she's never eaten cheese (unless you count that powdered parmesan, which I don't count as cheese) and therefore it is a neutral grocery store section. Deep breathing while counting cheese varieties can be very soothing, evidently. In case you're wondering, yeah, I'm aware this is making me a great big sized ball-o-crazy.

Anyway, back to today's obsession, the Eval. Wish us luck! I just hope they get to see KayTar in all her glorious KayTarosity. The whole package, so they can see her strengths and weaknesses and help us get her the perfect placement. She is thrilled because we are "Goin-a Kinnygarten cwassroom aday. Havin-a chairs! Mommy chair, Daddy chair, bwudda chair, baby chair! Family chairs! Oh my bueful family chairs!" Funny what kids get excited about.

Oh! She relayed a story yesterday! I left her with my mom for a bit to run an errand involving looooots of car time and when I got back she was in different pants. Our conversation went like this:

Me: KayTar, where are your pants?

KayTar: [touches her pants] Aigh hee-yah!

Me: Where are your brown pants?

KayTar: E's pants?!

Me: I know, those are E's pants, where are KayTar's BROWN pants?

KayTar: [looks in a circle, grabs her crotch for a second, then prolonged grunt of an audible pause] Pants! Ewwwww stinky! [holds out her hand, like my mom did when she changed her diaper presumably]

Me: Oh! You had a bad poop?

KayTar: Ewww stinky bad poop. E's WHITE pants.

And although I had to goad it out of her and infer certain things, and although she used mimcry (what my mom said/did) to tell me. She told me what happened to her pants! I was kind of thrilled, not only did I miss out on an "eww stinky bad poop" I got to hear about it from KayTar. A total win-win.

Alright, enough rambling. I must go get ready for the Big Eval. Wish us luck!

Ripping off the bandaid.

As I've talked up one side and down the other of this feeding fiasco, there is one important detail I have left out.

Last week, we had The Talk with the pediatrician. The Talk about a possible g-button (tube) in KayTar's future.

It isn't imminent and we aren't taking any sort of action on it right now, not even a surgical consultation, but it is out there now. It is the next line of defense.

As long as she continues to drink her Pediasure willingly, and as long as her weight doesn't suffer, we can continue on this current plan. However, if there is further decline, if her weight starts slipping, if she starts refusing to drink her Pediasures, that is the next step.

And it is kind of freaking me out.

Her weight is not the only risk here, if she fails to get proper nutrition, everything is at risk. All the hard won developmental milestones and progress she has made would be at risk. The brain cannot function properly without adequate nutrition, so we have to be sure she is properly nourished.

I've found that most people (including myself) have a very strong reaction to this possibility. The truth of the matter is, not only do I see this food situation differently than her hearing loss, everyone else does too. Food is fixable. It is hard to accept that it is ever truly out of a parent's control. And so even the suggestion of surgery seems extreme. It seems like we are giving up or like the doctor is jumping to outrageous conclusions. But that isn't the case.

The pediatrician is being proactive in having this discussion with us now, while it is only medically advisable and not medically necessary. She is giving us time to process in case it ever does become necessary. She is protecting the work we have done with KayTar, the work KayTar has done, the amazing little person she's become.

If it ever comes to surgery, then we cannot look at it as the enemy or something to be avoided at all costs. If it ever gets to that point, I have to be prepared to set those thoughts aside and be able to look at it as the means to keeping her healthy. That is all it will be. A simple way to keep her healthy. A way to feed her without the trauma of battle. If it comes to it, she would never be impeded from feeding orally, we would just have plan B on days when she didn't. The truth is, if I were to make a list of pros and cons on this one, there would be a long list of things in the pro column and two things in the con column, surgery and scarring. That is the only downside. And yet it feels so much larger than that, even as a possibility.

But we aren't there yet. So I have plenty of time to work through this, in case it every becomes more than a possibility or suggestion. I'm working on it, but truthfully, this regression is one of the hardest, if not the hardest, thing I've had to process. I think I am fairly skilled at processing things and releasing them. I find it quite necessary in living this life. But this, I am having a hard time with. I am over thinking it, I'm second guessing myself, I'm jumping to conclusions, I'm viewing it all under a microscope, and I don't know how to fix that.

Every day, sometimes every meal, I bounce between thinking, "She's never going to eat again." and "OMG! She's getting better!" based on her reaction. In truth, eating or not eating at a single meal means nothing for the future, and yet I cannot keep my heart from leaping or drooping in reaction.

Yesterday, she ate McDonald's nuggets again, 3 of them, and I immediately hopped on the phone and called Josh and said, "We have to find nuggets with batter like these, she'll eat them!" and he said, "You mean like the dino nuggets we bought 2 bulk boxes of that she hasn't touched? Nothing works for long, Kyla. There is no magic answer here." And he is right. Nothing works for long. There is no pattern here. No answer to unlock. No magic answer. But I want there to be a magic answer with every fiber of my being. And although I know it is unrealistic, I cannot stop pursuing it. I want to believe it is out there, that somehow we are at fault for not finding it, because if this is our fault, it is also within our power to rectify it. In truth, it isn't our fault. There is no magic solution, and I need to focus on the fact that she had a singular positive eating experience and be pleased with that. I need to stop looking at this as a solvable problem.

I need to lower my expectations to match our reality, because the disproportion is agonizing. I know I am causing it, that I am the only one who can stop tormenting myself. I even know which expectations need adjusting. I just don't know how to put it into practice. I can't let this go no matter how hard I try. Nothing has been this hard for me. Not when she couldn't walk. Not when she couldn't speak. Not when we found out she couldn't hear. Not when we found out she was globally delayed by roughly a year. Not when we found out she has lesions sprinkled about in her wee brain. Not even when we were so close to an answer and had it ripped away. I can't pinpoint the difference, except we are actively in this. Fighting against it. Hoping for a change. Maybe the root of it is I believe change is possible because she once had this. A little over a month ago, she was released from OT because she was eating. EATING. And now, here we are. How do I stop expecting her to regain that ground? How do I lower my expectations so that I can simply be? How do I get to the point when I truly don't care whether she has eaten, where I can simply be happy for the positive experiences? I know exactly what needs to change, I just can't put it into practice right now. And so I talk. And talk. And worry. And talk. And hope that whether she ever gains this ground back or not, I can learn to be happy with it, just like she is.

Milk. It's what's for dinner.

This is me, pretending I don't care.

This food thing. It's getting me. I don't know how to not care about it. I care. I care so much it makes my head explode. But I bite my tongue and out on my blank, couldn't-care-less face.

Food. It is fundamental. You breathe, your heart beats, you eat. It is how life is maintained. And my kid doesn't want to do it. At all.

I've talked a lot about this recently, some on-blog, some off-blog, some in person. I've had a million rapid fire thoughts on it all. And after all that processing this is my number one worry; she simply does not WANT to eat. She has no use or desire for it. The thought of it is actually so terrible to her in most situations that it activates her fight or flight reflex. Food causes this reaction.

If it was a sensory problem, we could tackle it in OT. But it isn't. She is refusing even her SAFEST foods. Because she just does not want it.

If it was low oral tone, again, we could tackle it in therapy. She could do oral exercises to make it easier to eat. But it isn't that eating is too hard, it is that she has no desire to even try. She doesn't even want to slurp up baby food.

But the one thing I cannot fix, no matter how much effort I put into it, is the fact that she just doesn't want to eat. No amount of therapy can create an appetite or innate desire for food.

Therapy can tackle outward issues, but it isn't magical cure.

I know, I know. She is getting her nutrition and that is what matters. She is taking her bottles and the Pediasure is doing the work she is unwilling to do. And she's happy with this arrangement. But I'm not.

Feeding children is what parents do. Mothers' bodies are actually physically designed for this purpose. It is literally coded into our DNA. And yet, here I am, not able to feed or encourage my child to eat. I know this is the right choice, but it doesn't make it feel any better. Even though it is such a natural thing I understand that medically, it isn't always possible. I understand it. It doesn't make it any more pleasant to experience. I know it isn't anything we've done. I know that pushing it makes no positive difference. Logically, I know we have done and are doing everything we can, but emotionally, it feels like I'm failing her at some basic level.

There is more to it, but I'm just not quite ready to walk through it.

This morning, she asked for bread. We gave it to her. She took a bite, dropped the bread, and pulled the bite out of her mouth and tossed it. And we did.not.react. 0 calories.

Last night, at the in-laws, she ate two chicken nuggets. 80 calories. Something.

Friday, she ate one bite of pretzel and stuck her fingers in some parmesan cheese and licked them off. I don't know how many calories that is.

Thursday, she ate three nuggets (unless she fed parts of them to the dog, which might be a possibility, let's pretend like it isn't though). By far the most she has eaten a long time. 127 calories.

You might think, "Oh! Look at that! She likes nuggets!" and you are right. But Thursday at dinner, we made her nuggets again and she didn't touch them. We could (and have tried to) serve her favorite foods at every meal. It's a no go. She plays at eating, nothing more. When it strikes her fancy, she'll give it a go. Otherwise, there is no need for it. Physically, she has no need of it. And you can't sustain life like that.

In 5 days, she has eaten:

2 potato smiles
5 nuggets
1 bite of pretzel and a finger full of powdered cheese

207 calories out of the roughly 5000 she needs in 5 days. 4%.

I look at that and think "That's great!" and then a half-second later, I think, "How in the world is that great?" Most kids (not ALL) eat that 3 times a day, 7 days per week. She is eating 4% of what she needs, on a SUCCESSFUL week. And we are pleased? The hardest part of this is the mental/emotional disconnect. I can see the situation emotionally and I can see the situation logically and the two never meet. I know we are doing the best we can for her. I know that these paltry attempts at eating are amazing. But I feel like we should somehow magically be able to fix this for her, I feel like our inability to do that is a failure. She can physically eat, so what are we doing wrong?

It is medical. Her inability or unwillingness to eat is as medical in origin as her hearing loss, and yet, her deafness doesn't make me feel this way. I know that fixing her hearing loss is outside of my abilities. The best I can do for that is buy her hearing aid and put it on every day. Her feeding disorder is exactly the same, the best I can do for her is buy Pediasure and put it in her bottle every day. But giving your child food is such a fundamental part of this parenting gig that it seems like it must be fixable. And it isn't.

I really don't know how we ended up way back here.



(I've never made requests about the types of comments I receive before, but on this one, please, please, no suggestions on how to fix it.)

And on we blindly stumble

There are weeks when this KayTar gig isn't easy. Things with her are not dire or incredibly serious. We aren't in the toughest spot possible, not by a long shot. But once in a while, things are just tough.

Tuesday I posted about the [not]eating situation. When I got home from class that night, Josh said, as soon as I came in the door, "Kyla. We have to talk about her eating situation. It is ridiculous." He doesn't even read my blog. Evidently we both just hit the wall that day. It was a combination of things, we typically expect regression after an episode, so we've been hoping that was all it was. We've been expectantly waiting for things to work themselves out. Every day we've subconsciously been thinking, "This is the day she'll eat. This is the day things will get better." and it hasn't, for 24 days. And on day 22, we both just realized we'd been waiting for things to improve and they haven't, at all. In fact, I pulled up our original spreadsheet, from July '06 when we started seeing the new pediatrician and KayTar is in WORSE SHAPE than she was even then. A month ago, she was nearly on table food, and now we're so far back we can't barely make out the starting line in the distance.

And so, we made a tough decision. A decision that seems ridiculous when I put it in writing. We aren't feeding her anymore. It makes me feel a little queasy when I write it, like it is against my internal parenting DNA. KayTar made this decision herself, 24 days ago, we are just finally at the point of accepting it. With all our hard work, all our coercion, all of our effort, she still IS.NOT.EATING. Maybe we get her to eat a jar, through the screaming. Maybe not. But we both think that by pushing her, it are creating a larger problem. It will just be one more negative food association, one more reason not to eat...and does she really need another reason? She already doesn't feel hunger. She is already repulsed by and fearful of food. She already struggles to eat it because of her low tone. Do we really want to heap "Great Big Battle of Wills" on to that already laundry list of deterrents? The answer, ultimately, is no. And so we will stop.

Instead of struggling to convince her to eat, we will up her Pediasure. She will, essentially, be formula fed again. Like a newborn. My three year old newborn. It isn't such a stretch, because she isn't eating enough now to keep up with a typical infant. A single jar of food? Or a couple french fries? Most babies eat more than that on a regular basis. She has the verbal skills now to ask for food if she wants it. But by upping her Pediasure, we will be ensuring adequate nutrition whether she decides to eat or not. Last night at dinner, she ate 2 potato smiles. 55 calories. Something small. She asked for them and ate them. I know some of you might say, "My kid has nights like that!" which is true. The key difference is that for your child, it is likely a poor eating night, but for KayTar it is a successful eating night. She asked for food! She ate it! It isn't enough to assist in her nutrition, but it was a positive food experience, which is important in its own way. We won't be denying her food, but we won't be initiating it, we won't be mentioning it at all. The struggle of food will be out of the equation. If she wants something, she can have it. If she doesn't, she'll still be healthy. It was the only decision to be made. It sounds ridiculous, doesn't it? How can not feeding your child be the best solution? But right now, it is what we have to do. Yesterday, between milk, Pediasure, and two smiles, she hit 979 calories. And that's good.

I've spoken with the pediatrician. We are going to go back to the feeding disorders specialist. We talked about starting her back on an appetite stimulant. It sounded promising. And then last night in bed I realized, we can't start her on an appetite stimulant. It is an oral medication. She was on it a little over a year ago, but at that point, we could still give her oral meds. She's lost that ability over this year. We can't even give her oral ABs when we have to. She gags and vomits it all up, then she stops drinking for a bit, until she decides we are no longer attempting to poison her. We can crush pills and hide them in her baby food...but the trick to that is SHE HAS TO BE EATING. And she's not. And that's what the medication is for. So how do you fix that?

And so some weeks are hard. Not incredibly so. But hard still. And it makes me feel a little crazy. Look at her. Doesn't she look normal? Like any other nearly three year old kid? I get lulled into thinking this life is normal. That she is normal. She LOOKS normal. If a stranger met her, they probably wouldn't notice anything at all other than maybe her little purple hearing aid, maybe that something was a little off with her speech. Maybe if her hair was down, they might not even notice her aid. Maybe her speech quirks wouldn't stand out at all. How can things seem so normal and still be this hard? But then I remember things aren't normal for KayTar, and sometimes things are difficult because of that. It is just so easy to forget when I'm watching her laugh and play, just like any other kid any other place in the world.

And once in a while when I have a week like this, I check the mail and find a surprising and wonderful package from a far away friend, and things suddenly seem easier. The sight of two joyful, bobbing, Chef-hatted heads dancing past me is enough to warm my insides each and every time. It makes me stop and smile and remember how lucky I am, no matter what happens to be going on this week.

My little Sisyphus

It is that time again in the 'Tar household. The time where KayTar isn't eating and it drives me to the computer to hammer out my frustrations in words and phrases. The rant? Is long overdue. She hasn't been eating since t he first of the year. Really, she hasn't. I know parents of typical kids think this is a huge exaggeration, but with KayTar, it isn't. I don't mean she hasn't eaten ANYTHING in 22 days, I mean she's eaten veeeeeeeeeery little in that time. Let me give you four sample days, for your perusal.

Day One:
1 Yumsters yogurt (100 calories/5g protein)

Day Two:
apples and chicken stage 2 jar food (70 calories/1g protein)
green beans stage 2 jar food (30 calories/1g protein)

Day Three:
Not.A.Thing (0 calories/0g protein)

Day Four:
sweet potatoes and chicken stage 2 jar food (80 calories/2g protein)

These are ENTIRE DAYS worth of what she is eating. DAYS. Some of you have very little babies who are eating more than KayTar on a daily basis. Some of those babies eat more than KayTar's daily intake in a SINGLE MEAL. I don't think she has eaten more than two jars (or one jar and one yogurt) in a day once since the start of the year. I know I've said this before, but if it were not for her bottle, can you imagine the shape she would be in? She is almost three and she eats enough for a 6 month old.

I don't know what happened exactly. She was doing well, eating quite a bit of table food (not healthy stuff, but progress nonetheless), then she had an episode, we went out of town, and she got sick. Boom, boom, boom. We always see regression with episodes in the food arena, we expect it, really. But it has been 21 days since the episode and still she is eating like a bird, less than a bird, really, because I think they eat on a daily basis. She stops eating in new environments, like when we were out of town. The first three days she ate nothing but a single yogurt on the third day. And when she is sick, she almost always gets borderline dehydrated, because her refusals are so entirely dedicated. There are three very solid reasons for this regression. I know, I know, I know, we always gain back the ground...it is just, I'm starting to worry is all. It is wearing on me.

The problem is not purely sensory-based, because these are SAFE foods, foods she trusts that are being denied. I mean, I sit her down to attempt to eat and she's screaming and thrashing and sobbing. I try and calm her down, talk her through it, distract her by having her read me the label, distract her by asking her to take and count bites, sometimes, rarely, something works and I can get her to eat a little. More often than not, I can't. I cave. I let her walk away. The alternative is worse, I don't want to make food a battle (more so than it naturally is for her). Josh gets home and says, "What did she eat today?" and I say, "Nothing." most days, in the eight hours he is gone, I usually cannot get her to eat ANYTHING. He will sit her down in the evening and try again. If she eats, this is usually when she does it, but it is rarely smooth sailing, it usually begins with the screaming and flailing and refusal, but sometimes, just having Daddy's face at the other end of the spoon works a little magic and she'll eat a jar....4 oz. 4 hard won ounces of food. Evening has always been her calm time, the time she is more willing to accept things. Breakfast is nearly impossible, even during good times she isn't too keen on morning food. Lunch is hit or miss. Dinner is the most reliable meal but even so, it isn't a sure thing.

A couple months ago, she was ASKING me for food. She would willingly pick a jar and go to her eating spot. Sometimes she might even say "MORE!" after we were done. Now, I say, "KayTar, are you ready to eat?" and she says, "Noooohohoho, I just PLAYIN, Mommy. No eating." which quickly dissolves into a sobbing, screaming mess if I happen to push the envelope any farther. I feel like I am doing her a disservice by not being able to convince her eating is a GOOD idea, but I know that pushing it any further will only compound the problem. But it feels careless, letting her effectively starve herself, you know? Shouldn't I be able to feed my child? Isn't it a tenet of parenthood? Anyone can feed a child. Anyone. But I can't, I can't get my nearly three year old to eat more than an infant.

She's back on Pediasure. Between the Pediasure and milk, she is hitting, roughly, 600 calories or so. It isn't her goal range, 900-1000, but it is something. At her check up next month, I suppose we'll see if any damage is being done to that weight we fought so hard to get back on her little body. I'm tracking her intake again. We're back there. I know we've been here before and things tend to move along at some point, but it is hard, walking these same circles over and over. Is she ever going to gain ground on this? Or is every step forward always going to be part of an endless loop of regression? Are we meant to push this boulder forever? Will we ever reach the top of the hill?

I remember when we initially saw her feeding disorder specialist, she told us the goal was to have KayTar eating normally by Kindergarten. At the time I was floored. FLOORED. Kindergarten? She might as well have said college. It was so distant and we smugly thought, "Surely she will be eating before KINDERGARTEN. How ridiculous!" But now? It seems too close. I actually have doubts than any sort of normal eating routine can be accomplished in the next two years. We've been at this nearly two years already, and here we are, my Excel spreadsheet looking exactly the same as it did last year.

Little foodie

A little over a week ago, KayTar was refusing food, except for yogurt. She was usually eating a single yogurt between the hours of 8am and 6pm. At 6pm, Josh would coerce her into trying something else, usually unsuccessfully. If it did work, she would eat two jars of baby food. She was subsisting on 4-12oz of food per day. Our nutritionist recommended backing off a bit, letting her call more of the shots when it comes to eating, so that is what I did. If she wanted A yogurt. I gave her A yogurt. We could always do Pediasure to make up for it, and KayTar wold be happy that she was allowed to make her own food decisions, hopefully saving us from adding "BATTLE" to the list of things that keep her from eating. Josh wasn't entirely keen on this idea, but I reminded him that usually a very poor week of eating is followed by a much better one. And then KayTar reminded him, because she went from that single yogurt to a pseudo-children's diet. I got to say, "See? I told you it would work itself out!" Even though I had no real idea of just how well it would work itself out.

A typical day that used to look like this:

1 Yogurt

Now looks like this (yesterday, for example):

Dry toast
Sausage (2-3 patties)
Yogurt (self-feeding!)
Chicken "muggets" (2-3)
Cheez-Its
2 jars of vegetables plus crushed vitamin
Chicken
Garlic mashed potatoes (3 adult spoonfuls!)

I am reluctant to post this, because we have been here before or at least CLOSE to here and seen it all go away. KayTar and food is a dance between advancement and regression. Next week, she might go back to not being hungry at all, or her sensory issues might have her back in the box-o-baby food. Or the episode that is due this week (since we are back on a lovely time schedule) might tear down the progress she has built up recently. I can't just enjoy it, because I know how precarious it is and if I get too used to it, I'll be even more disappointed if she loses it all. But right now, today, she is eating so well. Sometimes even instigating meals or asking for food. This is huge for a child who doesn't feel hunger usually. She could go for days without eating if left to her own devices, which is a huge part of our battle. If you never felt hungry, how would you feel about being forced to sit down and eat three times a day? Likely, you wouldn't be a fan, because you'd feel fine without it. It would just be a pointless chore without hunger or enjoyment, and sometimes it would even be scary or painful, depending on how it affects her senses on a particular day. It would be very difficult to like food if that were the case. But here she is, eating, although she is still very cautious about what is on the accepted list. It is hard not to be excited, even when I know how many times she's gained and lost in this area.

This video was taken right before her episode in September. That weekend she was eating ANYTHING and EVERYTHING offered to her. Diced veggies, hot dogs, dry cereal...she was just a normal kid for the weekend. It was sudden progress, she just woke up and was doing it. Then she has an episode that Sunday night and it was long gone. Like it had never happened at all, except for this video.

Photo and video editing at www.OneTrueMedia.com

I think that weekend, the upcoming episode must have flipped some neurological off-switch on her sensory issues, because we've never had progress like that, not even now. She won't touch cereal or diced veggies or a hot dog; nothing small, nothing wet, nothing slimy. It went as suddenly as it came. But her current progress has more to do with her personal preferences, being careful not to offend her senses while experimenting with table foods, and letting her make decisions, so I hope this one sticks. I always hope. But looking down the barrel of the next episode has me wondering if we will be serving single yogurts again next week. I hope not. I hope this is the year that KayTar finally gets a bit of real Thanksgiving on her plate instead of pureed sweet potatoes and turkey with a jarred green bean chaser. Or a yogurt, for that matter. If she gets to enjoy Thanksgiving, then THAT is what I will be thankful for, even if it slips away the very next day.