Thursday, January 31, 2008

Rocked it

Oh, that KayTar. She's amazing. She did really well today, from what I gather. We were there for roughly 3 hours and while she was entertained/tested by six or so specialists, they took turns interviewing me and having me fill out paperwork. I didn't pay a whole lot of attention to how she was "performing" per say. But she was happy and attentive mostly and she stole their hearts with her adorable braininess. All of the evaluators were female and they all said, "We NEVER get little girls. We might get one girl for every ten boys we see." Her stripey sweater and curly blonde ponytail gave her major bonus points. ;) Nothing is finalized yet, and we aren't even to the point of discussing classroom placement, but this is the summary from thus far. For the record, I loved ALL of the evaluators. They were great with her and attentive and kind and it was a positive experience. For all the worries I've had about this process, thus far, I haven't been displeased a single time.

Let's start with OT. She had KayTar play with a variety of textures, including shaving cream. KayTar was NOT a fan, but she sat at the table and obligingly put her finger in. Then she asked to wash her hands for the rest of the time. When they ignored her (purposefully) she took one of their hands and wiped her hands clean using theirs. She was well-behaved, but clearly showed some strong sensory preferences. Her fine motor, though, is excellent as it always has been. She is recommending OT for sensory/feeding purposes, not fine motor purposes, which I wholeheartedly agree with.

The physical therapist was great. She took a lot of time asking me about KayTar and watched her in action and had her attempt a few things. She also took a good look at her feet and legs and strongly recommended seeing an orthopedist. She said if nothing else, KayTar needs orthotics in her shoes. She said once her feet are more supported, her joints and muscles might start to tighten a bit and her body will feel safer and more balanced. She said the hypermobile joints and hypotonia aren't helping her poor balance, which is perfectly logical and I kind of wish her old PT would have made these suggestions early. She is going to review the preschool curriculum and determine whether KayTar will be able to function well without PT services and do what will be required of her. She still isn't able to run or jump, and she won't walk on uneven terrain (grass, mulch, sand) so we'll see.

The SLP was with KayTar almost the entire time, making notes and checking her comprehension and the like. She spoke with me before and after and asked periodic questions in between. She picked up on some of Katie's canned answers and such, but because I was so busy talking with everyone, I don't know exactly how she did. I think she presented a pretty typical for her type of speech, although I don't think she did any echolalia or direct mimicry. For the most part, I think it was a very accurate picture.

She is going to have an autism evaluation with the school psychologist, who was in and out today, but not technically evaluating. We are totally on board with this, because so many of KayTar's quirks do fall in the spectrum. I'm actually looking forward to it, just to see what she has to say.

Otherwise, KayTar was polite and well mannered and an entertaining delight. They were enamored with her. She made her preferences clear, but was pretty even keeled. Unfortunately, that isn't always the case, but it sure makes for a wonderful first impression. They were excited that she knows so much and said that in many areas she is above age level. She has a memory like a steel trap and learns quickly. All in all, I think it went swimmingly. I hope that they saw enough of each side to place her properly and I am thrilled that she will be having a behavioral evaluation because I think at this point, lots of her delayed areas fall into that category. Her speech is quirky, her senses are quirky, her balance is quirky, her reading is a quirk all on its own. Cognitively, she's a little ahead of the game, I think. But behaviorally, I'm not sure where she falls.

Anyway, long story short, she was adorable and I think it went well. The next step is the autism evaluation and then the Big Meeting where we talk placement. I am happy to say, thus far, this is has been a very positive experience...nerves notwithstanding.

Now I must scamper off and take care of a few things before class tonight. Oh, and in case you are dying to know, I am a straight A student thus far. In Philosophy I have a perfect grade and my lowest grade overall is 95. I am pleased.

And hey! Look at this handsome guy!

I happened to have a photo befitting Theme Thursday and decided to play along since I'm double posting today. The theme is "Focus" and he certainly was focused, little tongue peeking out and all. Video games are serious business!

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!

Tuesday, January 29, 2008

Wordless Wednesday: A Girl and her Gee

See more Wordless Wednesdays here.

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.

Sunday, January 27, 2008

My Best Shot Mission Monday

My Best Shot Monday:


And for Mission Monday (writing in the style of a children's book) I thought I would repost this one from last year. Most of my readers were not around then so it is almost like new. I was pleased to see that the people who originally commented on the post are still around, for the most part, so you all will just have to suffer through it again. And if you want a more updated version, just substitute "toddler" for "baby" and "Kinder" for "PreK". Everything else is still factual. ;)

If you...

If you don't sleep all night, the baby will wake prematurely.

If the baby wakes prematurely, you will have to have two cups of coffee.

If you have two cups of coffee, the baby will fall asleep as soon as it hits your blood stream.

If the baby falls asleep when it hits your bloodstream, it will be time to pick your son up from PreK.

If it is time to pick up your son up from PreK, your mom will come over to watch the baby.

If your mom comes over to watch the baby, she will clean the dishes for your husband.

If she cleans dishes for your husband, you will pick her up lunch on your way home to say thank you.

If you pick up her up lunch on the way home to say thank you, she will have already eaten.

If she has already eaten, she will take the food with her and go home.

If she takes the food with her and goes home, the phone will ring.

If the phone rings, it will be the speech therapist.

If it is the speech therapist, she will ask to come early.

If she comes early, your son will be unable to control himself.

If your son is unable to control himself, you will ask him to lie in bed quietly.

If you ask him to lie in bed quietly, he will cry and cry.

If you hear him cry and cry, you will make him laugh with silliness and fetch his favorite book for him.

If you make him laugh with silliness and fetch his favorite book for him, he will snuggle in happily.

If he snuggles in happily, he will become quiet as a mouse.

If he becomes quiet as a mouse, you will check on him after therapy.

If you check on him after therapy, he will be sound asleep.

If he is sound asleep, you will want to take a nap.

If you want to take a nap, the baby will be wide awake.

If the baby is awake, you will drink 2 cups of coffee.

And repeat.

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.)

Friday, January 25, 2008

Midnight ramblings

She longs to speak, but cannot bring herself to do so.

The silent minutes and hours and days roll by and she remains quiet because there is only one thing she can think of, speak of...this secret...but she will not give life or breath to it, not here, not when she is exposed and bare.

She tucks herself into bed at night, wishing sleep would come and she writes imaginary words on her ceiling and eyelids when it doesn't find her. She plucks words from the trees of her mind, turning them over in her hands, testing their weight, holding them close or discarding them, thinking of how sweet it would be to speak them aloud. The energy of it all buzzes inside of her and she rolls over, trying to quiet it and soothe it away. But sleep still dances around her like a hummingbird never quite still enough to land. The clock blinks and the tree boughs grow heavier and heavier with words ripe for harvesting.

She tries to appease herself by speaking of it in vagaries and shadows, never really saying what longs to be said, never succumbing to the birth pangs of the truth coursing through her, but instead she says something that amounts to nothing, hoping that this small offering is enough to make it through the night.

(Caveat: only words, dears, only words. nothing but textual decompression. and wine, maybe some of that, too.)

Thursday, January 24, 2008

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.

Tuesday, January 22, 2008

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 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.

Monday, January 21, 2008

Those lashes.

(click to enlarge, it loses some clarity when I shrink it for Blogger)

My Best Shot Monday, I almost forgot.

[post with actual content below, if you go for that sort of thing]

Fingers crossed.

I think, I hope, I pray, we are finally over the hump. I am superstitiously keeping up the quarantine banner for a while though. Twenty full consecutive days of sickness is more than enough. MORE THAN ENOUGH.

I spent Saturday here.

Right in the middle of my big ole bed. I rested all day while alternately reading blogs, completing homework assignments and studying, and watching Grey's Anatomy on DVD. It would have been heavenly if I hadn't felt like my sinuses were on fire and my body didn't feel like it had been at the bottom of an NFL dog pile.

Sunday I finally, FINALLY, started to feel 45% human again and the drive to get the house disinfected bumped that percentage up close to 70%. I spent the day stripping beds and scrubbing things. Today that mission continued and once it was all done, I breathed a hefty sigh of relief. Do I think it is really going to do much good now that we've all already been ravaged by this particular strain? Meh, maybe, maybe not. But does it make me feel better to do it? Yeah, it does. Disinfecting is my personal voodoo.

KayTar still has respiratory junk rattling around, but for the most part, I think even she is coming out of it. She's not puking at night anymore and she's even gone to bed at a decent hour (10:30) the past couple nights. I know 10:30 isn't a decent hour for most kids her age, but it sure beats midnight, that's for sure.

BubTar's been healthy for a couple weeks now, I think he got over it quicker than either KayTar or myself, and Josh and his super-duper immune system never even got it. I don't know how he stays so healthy in the midst of all of this, nearly every time, but I wish we could somehow give some of that immunity to KayTar. That girl has such a hard time kicking things.

As paltry as this post was, that is all that has been going on in our lives. Things are about to start up in full force again, tomorrow is our first therapy appointment in at least a month because of illnesses, speech picks back up, as they've found a replacement therapist for the meantime. Next week, her deaf co-op teacher is bringing a coworker who has personal experience with hyperlexia to our session to give me information and advice, KayTar has her district evaluation, and it will be time to apply for the new (sub-par) insurance. In one month (and one day), KayTar will be three years old and I just know this month is going to go by in one small blink. In one month, this whole way of life we've adapted to over the past year and a half, therapies and such, schedules and routines, will change and we'll be learning from scratch all over again. In one month, this little thing will be three whole years old.

It doesn't even seem possible.

PS: My dear friend Katie has been without her beautiful Jacob for a whole month today. It is the sort of anniversary nobody wants to have. One whole month without that smile. Those eyes. That sweet, sweet soul. If you have a moment, please stop by her blog and let her know we're all thinking of her and her Jakiepoo.

Friday, January 18, 2008

*So my lymph nodes and sinuses walk into a bar...

And sidle up to my lungs and they say "DUDE! Want to PARTY LIKE US?" and my lungs are all "ROCK ON!" and now I'm bordering on bronchitis. It is one big hacking, gagging, sniffling, snuffling party over here.

This morning Josh got BubTar ready for school without waking me (score!) and my mom picked up BubTar from school (score!) so today KayTar and I are just bumming around in our pajamas. It is actually a LOVELY way to spend the day. We've watched cartoons, played Guitar Hero (how much do I love KayTar telling me "YOU ROCK!" Even if she IS just reading the screen to me, she says it with such feeling!), read some books, colored, and just generally have been big ole bums. She's also made some important phone calls on her bottle, "What's yew name? Name IS KayTar! BYE!" or "Hello Ferapy (therapy)? No FERAPY a-day. Okay?! BYE!" She cut some paper with scissors. And she attempted to reply to some of my emails. It has been a busy, busy morning in the 'Tar household.

Week 1 of school went well. Tuesday I was mistaken for a fifteen year old, and last night I was told I was "very quiet" and "really smart"...which kind of means nerd, right? And the sad thing is, it's kind of true. I'm ahead in all my classes, except Philosophy, because I just got the textbook for it last night. I enjoy going to class. I enjoy engaging my brain a little. I especially enjoy the little welcome party my kids throw when I get home afterwards. I have time in the mornings after the boys leave and before KayTar wakes to read and study, and I can use naptime if needed. Plus, I made it to school while sick, which means I can totally do this, right? I'm really interested in all of the classes I'm taking, which lends itself to me staying on task, and my professor keeps things interesting as well. I feel good about this.

KayTar wouldn't be KayTar without mixing it up a bit, so the previous two mornings when I've checked her temperature (a habit I am in because she's been sick and feverish for two weeks) it was in the 95's! 95 is borderline hypothermic and she was indoors, in footsie pajamas, under her comforter, with our heat running. And we are in TEXAS not the Great White North. What is that about? She runs an average temperature when healthy, a nice midrange 98, so it is quite a deviation for her. Today, of course, it was normal, because KayTar can't make anything too obvious. She boggles my mind, that one.

To sum up; sick, boring, school, KayTar is weird, the end. That's about it for us. KayTar is napping, so I am now going to tuck myself into bed and spend some quality time with the cast of Scrubs until I drift off to Dreamland.

And for those of you who haven't seen my wittle baby face before, here you are.

Jenny, Julie (who I stole this photo from), and me.

*alternately titled, "Why You Should Never Blog (or operate heavy machinery) While Taking Cold Medication" or maybe "Let Me Bore You With My Over-Medicated, Stream of Consciousness Ramblings"

Thursday, January 17, 2008

Me and my baby face

On Tuesday night before class, Josh said, "Ready to go hang out with all the kids? You're going to be the old one, you know."

And I said, " First of all, usually adults take the evening courses. And also? Whatever. I totally fit in. In FACT, I bet at least one person thinks I'm a high schooler taking dual credit courses."

And I nailed that bet, before I was even IN CLASS, no less.

I was walking up the stairs with two other women who were attempting to find the room we had been switched to and they were discussing why they were taking the class. One woman turned to me and said, "And you! You're just a BABY! You're the same age as my daughter, I'm sure."

And I said, "Weeeeeell, probably not. I'm married and have two kids. I only LOOK like I'm twelve."

And she said, "No, not twelve. Fifteen."

Thaaaaaaanks. So I now look fifteen, which is an upgrade from twelve, right? I almost look old enough to drive!

We had a good chuckle and I told her how used to it I am, that people knock on my front door and ask me if my mother is home, how I'm suspiciously carded anytime I order a drink, how I was nearly kicked out of a hotel swimming pool after children's hours were over because I had no ID with me in the pool and he didn't believe I was over 18 (my mother-in-law had to vouch for my age, funnily enough), how I've been asked to wait for my mother before being allowed to get on a hotel elevator.

Good times.

So, long story short, I survived class with a little help from my good friends Coffee and Motrin and I look like a fifteen year old. I feel mostly better today, except my throat is still painful and one of my lymph nodes appears to be threatening to explode, but better is better, so I'll take it.

Tuesday, January 15, 2008

Typical, right?

Bones ache.
Joints throb.
Throat burns.
Fever rises.
Body shivers.


Bones ache.
Joints throb.
Throat burns.
Fever rises.
Body shivers.


Bones ache.
Joints throb.
Throat burns.
Fever rises.
Body shivers.

Welcome to your first day of class.


I'll be there...even if I have to be heavily medicated. But DUDE, right? Yeah.

Must go attempt to sucker KayTar into cartoon cuddle time in my bed now.

Monday, January 14, 2008


I decided to do my very first Best Shot Monday this week.

Thanks for the wise and all-knowing comments on my last post. Of course you are all right, we will do it, because it is what we must do. And this little girlie is full of surprises and I know that she might just have one more trick up her sleeve that we can't quite anticipate. I just had to dump it all into words, so I could set it aside and get on with the business of today. It is hard to have the future crowding its way into a mind that is fully consumed by today, so I just transferred it from my mind into this space and here it will stay for a while, until I have to pick it up again. Just the act of writing it made me feel lighter.

Sunday, January 13, 2008

Breathe in, breathe out, tell me all of your doubts

I feel as though I am on the edge of a precipice, yet frozen in this moment. There are important changes coming, and yet, I cannot fathom anything past today, anything past the endless cyclical sicknesses that have plagued our home this year. Tomorrow is officially my first day of classes, although my live, in-person classes don't start until Tuesday. I have no idea as to how this new challenge is going to fit into an already full life, I can't even devote the brain power to project a version of this future that is nearly the present.

As I've said many times, KayTar's district transition is soon. On Saturday night, Josh and I went out on a date. He asked me about the transition and logistics, because honestly, we don't always talk about these things. At the end of the day, we are happy to fall into bed together and watch TV or otherwise occupy ourselves. At the end of the day, as we listen for the sounds of vomit over KayTar's monitor, the very last thing I want to discuss is the ins and outs of KayTar business. He's an involved dad, don't get me wrong, but KayTar's care and schedule is my full time job. I'm her administrative assistant, if you will. I was describing the process to him and he stopped me and said, "No, I don't mean that. I mean, how is it going to WORK? How are you going to drop her off with strangers for three hours a day in a new place? She hates new people." And it knocked the wind out of me completely. Good God, I have been so occupied with the thought of qualifications and services that I haven't put an ounce of thought into how she is going to handle this. It took her 6 months to stop screaming through the entirety of each session of physical therapy. That was just one new person, with me present even. How the hell is she going to handle this? And I was up for hours thinking about it that night. How did I miss this part? How have I not planned it? Prepared for it? We haven't attended church in over a year because KayTar would get so upset in the nursery that she vomited on herself and the worker without fail. I'm supposed to leave her with strangers for several hours each day? I just don't know.

And yet, KayTar hasn't seen a therapist in close to a month, due to holidays and illnesses. Illnesses. She isn't in daycare, she isn't exposed to other children frequently and still, we are almost always sick. Instead of the germs traveling home through BubTar, she will be directly exposed to them. With as often as she is ill already, I can't fathom that increasing. Even if she qualifies for services, when will she attend to get them? Is it going to be difficult to bounce between the classroom for a week here and home a week there due to fevers and strep and respiratory crud and such? And her episodes? She's awake until midnight quite frequently, because she just can't sleep earlier, how will she wake early enough for school each day? We have a strict policy on not waking her before she is ready (unless there is a necessary doctor's appointment) because she had harder days when we do. More light sensitivity, higher episode predisposition, things like that. Again, I don't know how she will handle this sort of transition and schedule. We're very respectful of her boundaries and she thrives...when she's forced into a situation outside of those boundaries, the results are not always so pleasant. When I was working and she was in daycare, I NEVER got through a week without being called to the daycare to pick her up due to illness or without having to call in sick. And this was before we knew the whole story.

We are also approaching an attempt to wean her from the bottle. She has been gnawing on the nipples and I worry it isn't exactly safe for her to continue drinking from it. I can't explain how this transition worries me. The child has a will of steel. You've seen her stand her ground, she'll call your bluff every time. Earlier this year her bottle manufacturers changed their nipples. She stopped drinking, just because the nipple was a little different. I had to get friends from other areas of the country to look for bottles for her with the "right" nipple. We stockpiled and were saved. She doesn't grasp concepts like the Bottle Fairy and various anecdotes that can be used to help transition typical children, she cant understand the reason she needs to give it up at all. She is not one of the "she'll drink when she's thirsty" kids. Just like she's not the "she'll eat when she's hungry, she won't starve herself" kids. At least 75% of her calories in a day come through the bottle in the form of milk or Pediasure, mostly. Some days she eats only a single jar of baby food, sometimes as little as 35 calories. 35 CALORIES IN A DAY. When we were on vacation she had a single yogurt in 3 full days. If it wasn't for her hearty drinking, she would be in much sadder shape. I hate, hate, hate to rock this boat at all. It feels like a gamble and I'm not much of a risk taker. I don't like playing the odds, especially when losing isn't an option.

Things are so manageable with her most days, our life so routine, so reliable, that it is easy to forget how precarious it can be. Transition is the enemy of routine and routine is what gets us through. We've learned how to function here, within these parameters, and I think a season of relearning is approaching. New routines, readjustments, new challenges. And still, here we sit, the sick and feverish little dear asleep next to me in her small every day as though it is the same.

I want to write today

But my frame of mind just won't allow me to step outside of the KayTarissickandfeverishagainnotwithwhatshewassick withlastweekbutsomethingALLNEW box. But I want to. I want to write about something, anything else. It just isn't happening.

So instead I'll post photos, which aren't as cathartic as writing for me, but still a lovely creative outlet.

A few of my favorites from my sister's wedding.

Friday, January 11, 2008

"She puked all over her bed, damn you, JINX!"

For real. She did. Just like I said earlier. When will I learn to respect the jinx? I think at some point it stops being superstition and starts being factual.

Looks like a looooong night ahead. Vomiting wires her. She threw up around 11:30, so we might be in bed by 2 or so.

Here's a bit of a bright spot, though. Josh came home late tonight, after I had given KayTar her inhaler, which she was none to pleased with. When he got home, she said, "I take the medicine ona my mouth. Feel better, Daddy!" which is totally spontaneous AND relating an experience. Rock on, KayTar.

Since it is technically Saturday, here's a song:

The storm is coming but I don't mind.
People are dying, I close my blinds.

All that I know is I'm breathing now.

I want to change the world...instead I sleep.
I want to believe in more than you and me.

But all that I know is I'm breathing.
All I can do is keep breathing.
All we can do is keep breathing now.

All that I know is I'm breathing.
All I can do is keep breathing.
All we can do is keep breathing now.

All we can do is keep breathing
All we can do is keep breathing
All we can do is keep breathing
All we can do is keep breathing.
All we can do is keep breathing now.

-Keep Breathing, Ingrid Michaelson

***ETA: I need some advice. Is there anyone out there reading that has a special kiddo they've had to wean from the bottle? As soon as we are past this illness, we are going to have to. She is biting her bottle nipples now and I'm having mini panic attacks about the thought of the tips of one popping off and going down her windpipe. (Don't worry, we DO throw them away once she's mangled them, and we replace it with a new one) AGH! Soooo, we're going to have to give this weaning thing a try. My problem is her stubbornness. The pediatrician and I have discussed this a few times and decided to let her continue to use the bottle, because it keeps her hydrated and a vast percentage of her calories come through it. If we take it away and she strikes? Well, it could be bad news. But it can't be safe for her to keep masticating her nipples either. Any advice? Any old pros done this? For BubTar it was a breeze, but KayTar has this will of steel and I'm worried a bit. I don't the same old tricks are going to work. The good news is finally, she can drink from a sippy and a straw, although she has a hard time with a lot of sippy cups and the amount of strength it takes to get fluids from it. She still has low tone in her mouth. But she CAN do it now, it just isn't her preferred method. Has anyone ever ended up in the hospital for dehydration due to weaning? LOL. Because, well, I wouldn't put it past our girl. Sigh. HELP PLEASE!

That KayTar...

She's doing better. Much better. Drinking, peeing, even eating a bit. No more fever either. Of course, she's staying up until midnight whether she naps or not. And she lies in bed hacking until she gags for a goodly amount of time each night, but at the risk of jinxing myself, she hasn't actually night-vomited since we moved her to the big girl bed. Weird, eh? (now watch, I'll be back tomorrow saying "She puked all over her bed, damn you, JINX!") Maybe she thinks it is too pretty to defile with copious puking. Who knows. But last night was the first night in two weeks that I've fallen asleep beside my husband and woken up with him still there. We've had revolving beds lately. But at least there has been some measure of sleep. That is a good thing.

She's speaking in crazy lengthy sections of speech. She's fooled me into thinking she was creating spontaneous speech on quite a few occassions, such as this one; she was crying in her bed and said, "I'm sad because, ump, (ump is her FAKE audible pause) my Bionicle toy." So I thought, "WOW! That is detailed and spontaneous!" I fetched her a small Bionicle and she continued, "I'm sad because, ump, my Bionicle toy es BROKEN." It clearly was not broken and she was clearly mimicking her brother's sobbing earlier in the day over his toy falling over. But it took me THAT long to realize she was parroting. Honestly, sometimes I have no idea where that distinction lies anymore. She is so fluid with it, convincing even. Other phrases she has clearly lifted, but uses with skill include "Why not?" complete with whining voice. She has NO clue what this means. None. But she says it, oh-so-convincingly. Also, "I can't do it!" which is purely mimicking her brother's all too frequent statement. And "I'm too shy." She's not. She doesn't know what shy means, she just knows that BubTar says it with emotional inflection and she digs that sort of thing. She doesn't just copy words, she copies everything, intonation, pauses, audible pauses, mannerisms, the whole thing. It is really masterful. I think she understands a lot more now, but she also parrots a lot more and I think the percentages are still very skewed. Sometimes the repetition is very obvious, like on the way to get BubTar today.

KayTar: We hafta go bye-bye?
Me: Yes, we ARE going bye-bye.
KayTar: We hafta go bye-bye?
Me: Yes, we ARE goibg bye-bye, we are in the car.
KayTar: We hafta go bye-bye?
Me: Yes.
KayTar: We hafta go bye-bye?
Me: Yes, KayTar. We ARE going bye-bye.
KayTar: We hafta go bye-bye?
Me: Yes.
KayTar: We hafta go bye-bye?
Me: Yes.
KayTar: We hafta go bye-bye?
Me: (silent)
KayTar: We hafta go bye-bye?
Me: (silent)
KayTar: We hafta go bye-bye?
Me: (silent)
KayTar: We hafta go bye-bye?
Me: KayTar, let's be very quiet, okay?
KayTar: We hafta go bye-bye?

Hyperlexia is not a stand alone diagnosis at this time according to the party line of the medical/behavioral community. I've talked to therapists and evaluators and no one can help us get a diagnosis for it. I was really frustrated when I discovered that, because, it is just so descriptive of her. I can't understand why children who have this specific issue have to be given a primary diagnosis of autism or PPD-NOS or ADHD just to qualify for services. Most of these parents feel strongly that hyperlexia alone is the issue, but because the medical community hasn't accepted it as a singular condition yet, alternative primary diagnoses are commonly given. Well, in all my researching, I kept seeing something called Nonverbal Learning Disorder in conjunction with hyperlexia. And I had largely ignored it because, well, KayTar isn't nonverbal. She is VERY verbal. Oh, so verbal. She's gone from a silent signing kiddo to a limitless audio recording machine in the past year. But I finally delved into it, just because I repeatedly saw the two conditions connected in research. And this is what I found. (From this link)

Three broad categories of problem are often observed in children and adults with NLD:

1. Motoric dysfunction - lack of coordination, balance problems and difficulty

2. Visual-spatial disorganization - poor visual spatial analysis, disordered spatial perception, and difficulty with spatial orientation

3. Poor social cognition - difficulty interpreting non-verbal social cues such as gestures, body language and tone of voice; difficulty adjusting to transitions.

Common characteristics of NLD include but are not limited to:

* Performance IQ significantly lower than verbal IQ

* Precocious speech & language development and verbosity at a young age

* Remarkable rote verbatim memory

* Precocious reading decoding ability (Hyperlexia ["word calling"])

* Strong spelling from dictation but poor writing and written work organization

* Math disability

* Poor coordination & balance

* Poor fine motor skills

* Poor visual-spatial part-to-whole perception

* Difficulty comprehending novel material

* Deficits in social interaction

Some if it she is definitely too young to exhibit, some of it doesn't quite fit, such as the poor fine motor skills, but much of it is very descriptive of our wee girlie. So our new plan is to have her evaluated for NLD with a secondary of hyperlexia, because hyperlexia is accepted as a secondary diagnosis. The NLD even goes so far as to cover her really terrible balance and delayed motor skills. The pediatrician is looking into finding a colleague to evaluate her and we're hoping to get her in before her rescheduled district evaluation.

I want to clarify that we are not seeking to labeling her for labeling's sake. I know that a label changes exactly nothing. It is merely and adjective used to describe facets of KayTar that we are already aware of and function in. The merit of such a label is in the assurance of state services and also in the ability to explain KayTar to others in fewer than a thousand words. When I speak with someone new about her, even therapists and specialists, I have no way to neatly package her various and sundry issues. Having an umbrella to cover all the quirks would be a bit of a relief in that sense. I'm sure with laypeople we will still have to explain things one at a time, because they might not understand labels, but in dealing with people in a professional arena, a handful of neat and tidy summary words would be quite an asset. And so this is our next investigative step. It might not pan out. The label might not be a fit, and that is okay, too. But we'd still like to pursue it and find out for sure. As hard as it is to have someone label your child, it is also hard to know something is wrong, have it confirmed over and over again, and still have no way to ensure proper services or treatment for it. So we will keep looking, here and there, until we find something that fits.

Thursday, January 10, 2008

I'm taking a break...

From the bitchfest known as 2008 to say that I am officially registered for classes. As of Monday, I will be in school with a nearly full time class load. I'm taking Anatomy and Physiology, Philosophy, and Technical Report Writing. Fuuuuuuun.

Dude, I'm doing this. And I'm slightly terrified. The what-ifs are just a-rattling around my head.

What if KayTar has an episode when I am supposed to be in class?

What if she gets super sick?

What if she has to go to the hospital?

What if we have to be inpatient for testing again?

What if when I have weeks like this, I get way behind in my work?

What if my head explodes and it makes a mess all over my computer screen?

But then I think, I WANT this. I am committed. I can make it happen. I can push through this, right?

And I think the answer is yes.

Hey! It's me! At my sister's wedding. One of the only two views people had of me. I was either behind the camera or holding a screaming writhing KayTar! Fun times! I was a living advertisement for birth control!

PS: The KayTar had a rough night last night. She drank! (YAY!) And she peed! (YAY!) But she also coughed until she gagged for most of the night. Her daddy finally went to sleep in her bed with her at about 12:30 and she fell asleep sometime after. This morning she woke up and said, "Hurt my head!" and couldn't deal with any of the lights being on. She guided me to my bed and asked to be put in it and she promptly fell back asleep and is still sleeping as I write. She's still rough around the edges for sure, but she's taken in enough fluid that I feel safe we aren't headed to the hospital in the imminent future. [insert huge sigh of relief here]

PPS: I hear it is also delurking day, so if you are out there being a lurky lurker, say hi. Pretty please?

Wednesday, January 09, 2008

Wordless Wednesday: Things KayTar won't drink

Yeah, we're back to that.

List of things that are being denied:

Ice chips

Ways of delivery that are being denied:

Straw cup
Sippy cup
Open cup
Syringe (she actually nearly vomited when I squirted it in my own mouth to demonstrate its safety)
Soda can
Drizzling into mouth with straw

Hours she went without wetting a diaper yesterday: 7

She's not awake yet this morning, but I snuck in to feel her diaper. It is dry. Her last wet diaper was at 9pm. Its 9am. That's twelve hours.

I'm calling the ped. Can we all hope KayTar wakes up very, very thirsty? My one goal, ONE GOAL this year was to stay out of the hospital. And, it is day 9. NINE. And here we are teetering on this very familiar edge. Dude!

And oopsie, this was not exactly what you'd call wordless.

I'll keep you posted. Think thirsty thoughts.

ETA: She's had a few ounces since waking, but she hasn't wet at 15 hours. We have a ped appointment to get her evaluated for dehydration. We'll see how it goes.

ETA again: The ped checked her out and sent us home to try and squeeze some more liquid into her. She said she has blisters in her throat (that are NOT strep) that are probably the cause for not drinking or eating. She also said if she can wet two diapers a day, we can stay out of the hospital. She's wet one today, a little after the 16 hour mark. So we need a second before bedtime, ideally. We shall see.

ETA times three: Houston, we have pee-pee. We also have a little girl who is still awake because as soon as she lays down she coughs until she gags...but we have PEE-PEE. And that's golden. Snort. Golden. Heh. I hope tomorrow is a better day.

Tuesday, January 08, 2008

One more for the list

Let's see, where were we?

January 1st:
Stomach Flu for BubTar
Episode for KayTar
Canceled flight

January 2nd:
Hellish flight alone with KayTar. No one meets us at the airport. Have to pay a guy to help with baggage and catch a cab. Don't arrive until 12:30, no sleep until 2:30am.

January 3rd:
Wedding. Beautiful, but sort of like pulling my hair out by the roots. KayTar melts down 345028405078211334858 times.

January 4th:
BubTar spikes a fever.

January 5th:
BubTar fever gets much higher. We fly home with a sick little guy. I get searched at the airport and almost don't get a seat on the plane.

January 6th:
BubTar continues to run a 103 fever that is resistant to Motrin and Tylenol both.

January 7th:
Take BubTar to the doctor, it's viral. Negative strep swab! I thought about asking the doctor (who wasn't OUR ped) if I could keep it and frame it, such a rare occassion it is, but I thought he might find that strange.
KayTar spikes a 102.5 fever at 6pm.

And that, my friends, sums up the first week of 2008. Only a week?

The problem with KayTar's fever (besides the obvious illness) is that she is scheduled to have her big district evaluation for services on Wednesday, and if she has what BubTar has, she will definitely still be feverish on Wednesday, as he is still home sick 5 days after the onset. But, what can you do? I called this morning and the nearest they can reschedule for is the 29th. She's checking to see if she can find something sooner, because once they evaluate, they need time for placement and request all her medical records. We don't want the eval to be too close to her actual transfer date (her birthday). We shall see.

This is where I'd be all "Week 2 has to be better, right?!" except blind optimism is easier when both the kids aren't feverish and miserable. But I hope, at least for your sakes, this streak is over soon, because there are only so many ways I can say 2008 sucks before I start sounding like a broken record. ;)

Monday, January 07, 2008

However you frame it

So the trip was hellish, mostly. But in five or ten years, I probably won't remember any of that and I surely won't remember specific details. What I will remember is what the photographs tell me, and they tell me my kids spent a large portion of time with beautifully beaming faces and fancy clothes. They will remind me that BubTar and I took a walk together and he climbed a "mountain". They will remind me of the fun time he had in the swimming pool, not of the high fever he spiked a few hours later.

And so, this is what I will share with you. The beautiful side of our trip, because there were beautiful moments stuck in between the really stressful, anxiety-filled, germ-infested moments. Looking at these photos, you might actually forget what the trip was really like...and I think that is a good idea.

And a couple of true colors photos as well:

PS: BubTar is still sick, we are most definitely headed to the pediatrician today. He was running a steady 103 yesterday and it took Motrin and Tylenol before finally coming down to a more reasonable 100.6. Dare I say what I suspect it might be? I think I'll refrain, but I will say we are headed in for our first throat swabbing of the new year. Seven days in. What a year.

Sunday, January 06, 2008

You have 136 new posts in Bloglines...

Welcome home!

*incredibly long sigh of relief*

We are HOME. We arrived at our door at 1:27am today. The kids were angels on the plane. ANGELS. Someone even complimented sweet KayTar on what a good girl she was (hint, it was not the woman sitting in front of her who REPEATEDLY had her seat kicked). It was totally different than the trip there in which I was almost bitten and was kicked a few dozen times. It went really well.

But BEFORE we got on the plane...well, that's a different story. Let's go back to Friday.

On Friday, BubTar started running fever, roughly a 102. I medicated him and put him to bed. He ran a little fever Saturday morning, but after his nap he woke up with a RAGING fever. It was at least a 103. At least. I medicated him to break it long enough to get through our flight. It worked. He was fever free until 3am yesterday, a couple hours after we got home. I checked it with the thermometer and it was in fact a 103. He is a sick little dude. Poor monkey.

Back to Saturday, my mom decided to keep our hotel room for the day, so the kids could rest rather than have to hang out somewhere unfamiliar until the flight. I could not be more thankful for this decision. Otherwise, we all might have gone insane. Really. We were teetering there for a bit.

We got to the airport and checked in with the sky cap and EVERYONE got boarding passes...EXCEPT ME. I got a slip of paper saying to go to the Gate to get mine, because evidently they were RUNNING OUT OF SEATS. Sonofabiscuit, I was getting on that plane with my kids. We attempted to hurry through to the gate, but I was TAGGED FOR A SEARCH. Great right? I got SEARCHED. Patted down, bags dumped, the whole deal. They wiped my stuff with this cloth to check for explosives I guess. And they aren't really jovial about this. I kept trying to make eye contact and smile because it is a little ridiculous, I was flagged because my ticketed name didn't match my ID (married name/non-married name)...not because I'm an actual threat. But the lady was NOT in the mood to return my smile. Sheesh. I was smiling because, HELLO! I MIGHT NOT GET A SEAT ON THE PLANE WITH MY KIDS AND INSTEAD OF RUSHING TO THE GATE TO GET MY PASS I AM STANDING HERE BEING SEARCHED, SO I AM GOING TO SMILE OR FLIP THE HELL OUT, THANKYOUVERYMUCH. But alas, she wouldn't smile.

In the meantime, my mom had the kids and all their crap:

Her carry-on
Her purse
KayTar's car seat
KayTar's stroller
BubTar's backpack
All of their shoes, not on their feet
KayTar (who can't walk quickly or effectively and must be pushed or carried)
BubTar (who was a sick little monkey)

back at security, unable to move because she doesn't have enough arms. FUN TIMES! Finally, I was deemed to not be a threat to national security, and was able to help her.

We got to the gate and I was behind some lady who was stuck there from a previous flight, bless her heart, but she was at that the desk forever. I felt for her, but I also didn't want to become her, left behind while my family flew away. I bounced around impatiently, but kindly, I smiled sympathetically when she would turn around and chatted with her....but DUDE. I wanted my boarding pass. I got it. YAY! But it was group C and my mom and BubTar were A's and KayTar was a B. The guy at the desk said, "Everyone board with the A's." But the boarding lady disagreed and made KayTar and I wait. It worked out well, though. My mom was able to save us all seat AND get KayTar's seat in there for us before we got on the plane.

And then the flight was was smooth like butter. No problems at all, except for the fact that I couldn't keep KayTar from putting her feet on the seat in front of her and pushing. I tried to redirect, but it wasn't I am sorry to the lady who sat right in front of her last night, but I promise the next time I am sitting anywhere in front of a kiddo who repeatedly kicks my seat, I will take my karmic payback like a good girl. Sometimes letting your kid kick a seat is the only thing between you and scream-induced insanity and I will be more than happy to repay that debt.

We are home. HOME!! And it feels like a victory. I'll do a wrap up post soon, but for now, I have a sickie BubTar to tend and some relaxing to do. I hope you all are doing well, and I'll be by to see you all soon. I've missed you!

Friday, January 04, 2008

Today was better...

We vegged. Zoned. Chilled. Did a whole lot of nothing. It was niiiiiiice.

I took BubTar on a walk and took a ton of photos.

Then he went swimming while KayTar had some low key time with my mom.

And this evening, he spiked a fever. I didn't pack the thermometer (wishful thinking, much?) but it is at least a 102. He didn't move a muscle once his fever started, even when his cousins came to visit. He's feeling pretty poorly. I gave him Motrin before bed, hoping to help him sleep through the night.

Tomorrow we check out at 11am. Our flight isn't until 9:20pm. We will hang out at the residence of the wedding in the meantime, with KayTar the Anxious and BubTar the Feverish. They are going to be tanked before we ever make it to the airport. We won't arrive at home until midnight IF everything is running on time. I hope hope HOPE everything is running on time.

Wish us luck. Getting home is going to feel better than it ever has before.

Thursday, January 03, 2008

We made it.

The flight was fine when KayTar wasn't screaming, flailing, or attempting to bite me.

KayTar was temorarily possessed by a small banshee extremely in touch with her two year old side.

The wedding was beautiful and totally overwhelming for KayTar from start to finish.

The kids were emotional wrecks incredibly cute when they weren't screaming or crying.

The ceremony was lovely or so it appears from the photos, I was inside with KayTar who had reached critical mass before it ever began.

Having all of that out of the way is priceless.

Stories and photos forthcoming.

Tuesday, January 01, 2008

First Episode of 2008.

Episode in an airport, take two.

I should have given up this morning as soon as BubTar puked.

But I didn't. Obviously.

BubTar was feeling better, so we went ahead with plans. We packed and prepared and left for the airport. On the way, KayTar zoned out. Totally. She tucked her head into the crack of her car seat and stopped moving. Stopped talking. Just stopped. I looked and Josh and he looked at me, and we knew. We always know. We never quite accept it initially, though. So I said to my parents, "Maybe KayTar isn't quite right. You know. She might be having an---maybe, though. Just maybe." But we knew.

My mom suggested we go ahead and check the bags, we could always get them back if we had to. So we checked the bags. Then, of course, once the bags were taken away it was undoubtedly clear she WAS in fact having an episode, evidenced by the vomiting and writhing and disappearance of our lucid little baby girl. And then we had to track the bags down. While KayTar puked and cried. Exciting stuff.

Thankfully, the lovely clerk at Southwest rescheduled KayTar and I for tomorrow and BubTar went ahead and flew with my mother tonight. He was heartbroken when he found out we couldn't go. So tomorrow evening, once this is done and over, KayTar and I will fly out, too. For now, we're home waiting for our sweet girl to feel better and fully come back to us.

Let's recap 2008:

Stomach flu
Canceled flight

And it is just DAY ONE. Dude.

PS: Obviously me saying ANYTHING about not blogging for a few days is a BAD OMEN and it totally means I'll be blogging WAY MORE than usual.