The reality is...

I had second and third and fourth thoughts about hitting publish on my last post. I rewrote it twice. It felt too whiny, too needy, too woe is me. I don't like being that person. This situation has been so much more difficult than it currently is, I feel ungrateful when I let it get to me, and even more ungrateful when I put those feelings in writing. There are worse things than missing test results or unknown diagnoses. There are women who have lost their children, who would give anything to be waiting on test results, if only that meant their child was still with them. There are people who have their answers, only they aren't the kind they'd like. Answers that tell parents how many days they have left with their children or paints a grim picture of what those days will hold. There are worse things than wondering.

At the same time, I try my best to be real in this space. I started this blog because I wanted to say things that I felt I couldn't say in my day to day life. I wanted to be honest instead of smiling while assuring people that everything is just fine. Because sometimes, things are not fine. Sometimes things are difficult. It may not compare to the toughest stuff out there, it can still be tough. Life can be tough for anyone at any moment. To paint a picture that shows otherwise is false.

There are choices in blogging. You choose how far you let others in, how honest you are, what light you paint yourself in. The words I share and withhold create the version of me that you all know. I could easily leave out those moments where I'm faltering. I could share only my strongest times, present myself steadfast in my strength. But that isn't who I am, and it is never who I want to be in this space. This is my space, the one corner of the world I let myself be whole. The place where I don't hide parts of myself. A place where parents in similar situations can find common ground, shared joys and struggles, I don't want to cheapen that by being less than honest about how it wears on me. It does wear on me. It wears on all of us at times.

So, no matter how difficult I find it to hit that publish button when it feels like I am being an ungrateful prick, I will do it. I will show you my weaknesses, because all of you have shared your hearts with me, and I can do no less than return the honor.

MY HEART

This is what it looks like when your subconscious explodes

Last night I had a dream based loosely on reality.

In it, I was impatiently waiting on the EEG results from our hospital stay six weeks ago.

In reality, I am still waiting on those results.

In the dream, I spent my time making phone calls to attempt to track down the results. I called the neurology chief, other neurologists in the same clinic, I called anyone and everyone I could think of. I was tired of waiting.

In reality, I have been calling the neurologist weekly for at least four weeks. I have received exactly one return call, two weeks ago, in which he told me that the lab never sent him her results. He said he could check on it and call me the following week. I have had no call backs since then, and I have left several more messages, both with the receptionist and his secretary. Our pediatrician has attempted to contact him as well, with no replies. I went so far as to contact the EMU (epilepsy monitoring unit) lab to get more information about the delay, but have received no return calls.

In the dream, the neurologist finally returned my call. He said, "Kyla, remember the last time we spoke? I asked you to call and ask your audiologist for some information on KayTar. I told you I could not read the EEG results until I had that information." Suddenly, I had a flashback, and indeed I did remember his request during the previous phone call. I immediately called the audiologist, retrieved the information and passed it along. I spent the remainder of the dream calling all of the people I had harassed unnecessarily in my pursuit of answers. I had to tell them that it turned out not to be the doctor's fault at all, but it was my own mistake causing the hold up.

It took me five or ten minutes upon waking to differentiate between the dream and reality. For a while, I thought, "That's it! I just need to call the audiologist and get that information!" But slowly, I realized that was only the case in my dream. I do need to call the audiologist, but in regards to a completely separate issue. I woke feeling both relieved and embarrassed. The beauty of the dream was because the delay was my fault all along, I had the power to rectify the situation. In reality, I have no bearing on when my calls get answered or what the outcomes are. I felt embarrassed because I had caused such a fuss when I was actually the cause of the delay. At this point, I would gladly take the embarrassment if it meant I also had the power to track down the answers I'm seeking.

The elusive answers aren't only tied up in this EEG, they are lurking everywhere. In the meeting yesterday, I think the act of verbally listing exactly how much we don't know cracked the seal on the big ol' bottle of crazy I keep sealed tightly inside. My dream was the teeniest bit of pressurized air seeping out and in its wake, the contents of the bottle are shifting and churning. The questions I keep silenced inside range from serious to inconsequential, but the punctuation at the end begs for an answer regardless of the severity. I could list them for you, in fact, I started to while composing this post...it just felt like too much. I didn't want to hit post and see those questions staring back at me.

I hate looking at things like this. There were times when the waiting was so much harder. Times when I was terrified, times when I thought I'd lose her forever. Times when she wasn't thriving, her weight was down, she wasn't progressing and every day felt heavy and I was constantly filled with a quiet sense of dread. There certainly are worse things than unanswered questions, but when you are stuck in the limbo of not knowing, you are forced to entertain the possibility that the outcome might not be rose colored. Things are changing, she has more symptoms than she did a year ago, in spite of her developmental progress. I don't know what it means for her. When you don't really know, nothing is guaranteed. I forget this often; I prefer to look at the other side of things. I choose to dwell on her accomplishments, how far she has come, how far she is going. But medically speaking, I don't know much about her situation, no one does. When I'm forced to really think about that and I see just how wispy those threads of information are, it knocks me off balance. When my dreams highlight how little control I actually have over the situation, I spend the next day in a sort of mental fog, the air feels thick and full with the specters of those unanswered questions hovering around me. Questions that, unfortunately, I have no authority to answer.

120 days...

Until my baby turns three and starts school, so saith the meeting I attended today. We had our very first meeting with the school district today, aptly referred to as a 120 day meeting. It was mostly an exchange of paperwork on both sides. I was given information about the process and the programs, and in turned I offered up a cursory review of all things KayTar.

The coordinator for the district was friendly enough, she reviewed the remainder of the process before placement and then reviewed the various levels of placement within the district. I didn't have a couple pieces of paperwork on hand, so I'll have to run those by next week. Once those are handed off, we will schedule a cursory evaluation, probably for November, and from there they will decide if an intensive evaluation is necessary. The placement levels range from speech therapy once or twice a week to three hour/five day per week special education preschool. The mid-range placements include intensive language labs for longer time periods twice per week and community-based preschool. The community-based preschool is housed in area preschools with district appointed special-ed teachers in the classroom. The classes house six special needs children and twelve typically developing children. The classroom ratio is between 6:1 or 5:1 in those classrooms. The special-ed preschool program has a ratio of 3:1.

I gave a quick, concentrated overview of KayTar's weaknesses and medical hoopla. I feel really quite capable when discussing her delays, because I know them intimately. However, the medical issues are always fun to discuss because it is filled with so many gaps and "I don't really know what's going on." I get to say intelligent sounding things like:

"She has these drop attacks where she is just laid flat out. It might be dizziness or it might be seizures. We don't know."

"She has these things we call 'eye deviations' where her eyes roll up and over in her head and stay for a few seconds, then they come back down. Yeah, they might be seizures, but we don't know. We're still waiting on EEG results from last month. Wait, I mean TWO months ago now."

"Well, she might be having migraines OR seizures, or migraines AND seizures, or maybe one night Migraine and Seizure had a little too much to drink, put on a little Barry White, got carried away, and made a lovechild in her brain. We don't know."

"So to sum up, WE DON'T KNOW."

Good times! It is always nice to be reminded how little we actually know. Very refreshing. Based on our conversations, I have a feeling that if KayTar qualifies for placement in a classroom (and I hope she does, because she needs it), I think she would likely end up in the 5 day program, because I believe those teachers are the most equipped to deal with the medical side of her case. This is just my feeling and not representative of anything that was hinted to on their part, all of that will wait until the evaluations have been done. This meeting was fairly quick and easy, KayTar didn't even need to be present. The next meeting will probably take place sometime in November and we'll go from there.

Can it really be time for this tiny pink peanut to start school?

Wordless [Delurking] Wednesday: 1 month

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I know it is Wordless Wednesday, but it is also Delurking Day! So I'm calling you out...yes, you! Back there in the shadows, wearing the trench coat and dark glasses! I see you here all the time, but you just sneak in and out, so quietly. Today is a holiday just for you, say hello! I'd love to meet you.

To give you a topic of conversation (other than telling me how cute the kids are, because, let's face it...squishy little babies are always adorable) I offer this question: What is your favorite late night snack?

This isn't hardball, so speak up! :)

PS: In case you missed it, KayTar learned to somersault last night and there is a lovely video just there. Usually I don't stack posts so close together, but today was a double whammy so I bent the rules.

This just in!

KayTar learned how to somersault this evening!

Make an on-line slide show at www.OneTrueMedia.com

Yes, I know a 3 minute video of my toddler somersaulting is just a wee bit self-indulgent, but I'm a blogger, so I'm entitled, right? Right.

And also? She did it for at least 45 minutes straight, so this is the incredibly condensed version. Feel lucky. I was repeating, "Push off, and ROLL!" every 30 seconds for 45 minutes. At one point she told me, "Do it! With mouth! WOOHOO KAYTAR!" Which translates roughly to, "Hey you! You are SUPPOSED to be CHEERING! Get with it!" (check out Sage's comment, I think she nailed the PERFECT translation)

But she is doing it! Wait until we show her physical therapist on Thursday! :)

The Sky Above Ablaze*

Today is a beautiful day. Breathtakingly beautiful. The sort of day that makes you long to be at the park, swinging high into the sky. The kind of day that forces my camera to point skyward rather than at the ankle biters tugging on my pants. A day without humidity or stifling heat. A day with a soft breeze, clear sky, and warming sun. Beauty.






And yet, in the midst of this beautiful day, we are indoors once again. KayTar is having a sensitive day, which seem to be becoming the rule rather than the exception. Last month, she had a solid two week block where we couldn't go outside (even to walk to the car or through a parking lot) without her screaming and clawing her eyes.

Because today is so beautiful, on the way to pick BubTar up from school, I rolled our windows down. Instantly she was screaming and thrashing around in her seat and I had to roll them back up, so she could be safely and comfortably behind the tinted glass. When she is feeling her best, she loves having the windows down; she giggles into the wind as it streams in her window, ruffling her hair and tickling her skin. Today she just isn't quite feeling her best.

Upon discovering the delightful weather this morning, I decided to take the kids to the park after school. I thought we could just stop by on the way home from BubTar's school, spend a little time swinging and sliding before heading home for lunch, but the park just wasn't in the cards for us. If KayTar can't stand the sunlight from an open car window, there is no way she can tolerate it long enough for a jaunt around the park. There will be plenty of other days to be filled with sunlight and swings.

So for today, we'll just admire the beauty from afar.




*bonus points if you can name the song, it is one of KayTar's favorites.

Lockdown

With his initial (greatly regretted) toothfairy transaction, BubTar bought a new to us XBOX game. I know video games and children are a hot topic, but this isn't what the post is about. Josh is a gamer; BubTar likes to play in tandem when he can, so we keep child-friendly games around. We are very picky about what he is allowed to play, though. This game is still just a bit too hard for him, if we are being honest, it is a little too hard for ME, because he has matched my sad video gaming prowess. If he needs help when playing, chances are greater that I will use up his extra lives while assisting, rather than make any sort of progress.

This has been a great source of emotional turmoil as of late, resulting in a total grounding from all gaming systems due to the emotional overload it is creating. I will give you an example:

B: (screaming) I can't DO IT! IT'S TOO HARD!

M: Why don't you turn it off and come back and try again later when you don't feel so upset?

B: No! I don't want to turn it off. I want to do it! It isn't about winning, its about PRACTICING.

M: Well, then you need to get yourself under control, because you can't play if you continue to scream and cry. It isn't worth getting so upset.

B: I'm so upset because I'm LOSING!

M: I know losing upsets you. If you need help, you can turn it off until Dad gets home and he'll help you.

B: I want to do it now. (crying now)

M: If you want to keep playing, you need to control yourself. I can try and help you, but you are getting too upset and it is supposed to be fun. If you aren't having fun, you need to save it and turn it off.

B: (screaming and crying) I can't control myself! I'm SAAAAAAAAD!

M: Either you turn it off, or I do. It is time to turn it off if you feel this sad.

B: (sobbing) I'm not sad anymore.

M: You're still crying, buddy.

B: I just can't stop it.

M: Well, then we're turning it off and you can try again with Dad later.

B: (sprawls himself on the floor, crying hysterically)

M: You know you aren't supposed to act like that. You need to calm down and go do something else.

B: (crying on the floor)

M: If you can't calm down, this is the end of playing for the whole day. It isn't good for you to get this upset over it.

B: (crying louder)

M: This is your last warning, Bub.

B: (screams)

M: Okay, no more today. You need to go up to your room and working on calming down.

Yesterday, this happened again, although he turned it off himself and went to cry quietly in his room. He came out of his room and said:

B: You know, I am sad and crying.

M: I know, but you still can't play. It isn't good for you to get so upset while playing. That is when it stops being fun. Does Daddy cry when he has a hard time with a game?

B: YOU KNOW I AM NOT DADDY. WE ARE NOT THE SAME! (total breakdown)

I almost died. All I could manage at that point was an "Oh baby, come here." and I let him cry in my lap. It was just such a grown up thing to say. The way he said it, I don't know. I saw him standing there at sixteen, having the same discussion with me. "I am not Daddy." Ack. I saw myself, crying in bed, telling my dad, "But I'm not like them, we're not the same." It made tears well up in my eyes. Once he was done crying, I explained that I wasn't trying to say he was like Josh or that he needed to be like Josh, I was just trying to show him that when you are ready to play video games on your own, you are also able to control your emotions. We know to walk away when we start getting too frustrated. He needs to start thinking about how he feels and walk away when he starts to feel like it is too much. He can always come back or get help later. If he can't stop playing when he feels too frustrated, then I'll have to step in and remind him...but we want him to learn to read his feelings and know when the frustration level is too much. This isn't only applicable to a video game, but extends to all areas. He has that perfectionist streak and it causes these type of scenes over and over, the only difference is the issue he is struggling with.

He felt better, I felt better. Josh got home and helped him with his trouble spot and life went on. But I was left with this sudden shell-shocked awareness that he has an entire internal monologue that I don't know about, all sorts of important to him ideas and feelings that I am only privy to when he decides to share and that thought is kind of mind-blowing for me.

****

B: What is lockdown?

M: What?

B: LOCK DOWN. What is it?

M: Uhhhh.

B: We practiced it at school today and it is call LOCKDOWN.

M: You practiced lockdown?

B: Yes.

M: You tell me what it is.

B: Well, we have to close the door and the windows and go sit on the carpet and be SO quiet. What is it? Why do we have to practice?

M: (thinking, how do I explain lockdown without bringing up terrorists and students with handguns?) Lockdown is when there is a school emergency and the teacher needs you to be SO quiet and do your very best listening.

B: What do I do if there is lockdown and I am in the bathroom?

M: Uhhh...

B: I know! I stay IN THE BATHROOM QUIETLY. But if it is a FIRE DRILL, then I go outside with a Big Kid.

M: Yeah, that sounds right.

B: And what if we are in the hallway? Where do we go?

M: Do you know?

B: Inside the classroom we are next to.

M: It is very good that you know all this.

B: Yes.

M: (having a panic attack)

Holy crap. My five year old is learning lockdown procedures. He goes to a small, private school in our area. It is easy to forget that I really am sending him off into the world every day when it just feels like an extension of home. But I am sending him off into the world...a world of lockdown drills, of having to know how to handle himself in very real emergencies. A world that I don't know that his five year old self can handle yet.

Wordless Wednesday: Birth

On pediatricians.

During last week's re-evaluation, our caseworker said, "And who is Dr. Ex-Pediatrician?" and I audibly groaned. Everyone in the room laughed and there was a chorus of "Oooh, that bad, eh?" and the like. I explained, "He is our original pediatrician, the one who kept assuring us things were just fine." And the caseworker said, "Let's just get him out of her file, okay?" And so we did. It has been long enough that he no longer has any necessary information on KayTar, although he still has not released her full file to either ECI or our current pediatrician. That conversation, coupled with Lisa's recent exposition on the less-than-professional medical professionals she has encountered, reminded me of something I've intended to write for a very long time.

Last June, we saw our current pediatrician for the first time. She immediately told us:

KayTar needed an ECI evaluation, for significant delays.
KayTar needed a neurological work-up, including an MRI.
KayTar needed medication for her chronic constipation.
KayTar needed to see a specialist for her feeding issues.
And we needed to get her on health insurance before we started all of this.

This was after being the room with KayTar for possibly 15 minutes, that is how obvious these issues were. KayTar was such a sickly infant, that we never went more than two weeks without a visit to the old pediatrician. He saw her plenty, and always assured us things were fine. He just wasn't looking at her.

To get KayTar on insurance, we had to have our pediatrician fill out a form. Since ex-pediatrician had her records, he was the one to fill the form out.

(click to make larger)

I only edited to remove identifying information and add in the pseudonym. I left the signature, because it can't be identified in any way. The letter it resembles isn't even in his name.

There were six questions, and he answered every single one of them incorrectly.

She does have genetic, congential, and developmental abnormalities. Not just one, but all three from what we gather.

She is in therapy four times per week; developmental, occupational, physical, and speech.

She has seen eight specialists; neurology, genetics, gastroenterology, developmental psychiatry, ENT, feeding disorders, ophthalmology, and audiology.

She has had multiple outpatient procedures; two MRIs, two CT scans, and two outpatient EEGs. As well as a hospital stay for a diagnostic procedure.

She takes Miralax daily, but in the past year she has been on two additional daily medications, in conjunction with the medications she takes during an episode.

And after reading the previous five explanations, six kind of takes care of itself, doesn't it? Clearly she has medical conditions that require ongoing follow ups. At the time he signed this, he had also allowed her to fall so far off the growth curve that it took us a very long time to fix it.

Sigh. It is over now, and had been for so long, but it still irks me that he blatantly overlooked everything about her. I asked him on multiple occasions about her development, her weight, her constipation. We were assured it wasn't a problem. How could he miss for seventeen months what it took our current doctor fifteen minutes to see?

She had her first episode when we were seeing him. I rushed her to his office and he said, "Maybe it is meningitis." He took blood work to test her white cell count (no LP, even though HE SUGGESTED MENINGITIS) and sent us home. He promised to rush it and have it back by the next day. When I called the office in a panic the next day, the nurse told me, "That takes a week to get back. Sorry." I called several times that day, and even left him and voice message. Eventually he called me back, clearly never having heard my message. It wasn't meningitis, of course, but in that moment I didn't know that. It boggles my mind how something that could have been so serious was handled. Regardless, there was absolutely no follow up done. He never even attempted to explain what had happened to her. It wasn't meningitis and that was all there was to know.

Evening of the first episode.

In the first six months of seeing the new pediatrician, I must have thanked her a thousand times and that was exercising self-restraint. I sent a few small gifts, too. I just could not contain the gratefulness I had for her. It was always met with, "Really, I'm just doing my job." but I don't know if she really realizes how rare it is to find a pediatrician who does the job with such dedication and skill. She changed our lives, KayTar's life especially. She is where she is today, because of our current pediatrician. Without her, I hate to think where we'd be. Sure, we still don't have answers to many of our questions, but it isn't for lack of trying. I could not dream up someone who could do a better job of managing KayTar's care and helping us through all this. We really hit the jackpot in finding her.

We were referred by a friend (whose blog I would link you to if it weren't private, Hi Amy!) and I almost didn't give it a shot. The office is almost an hour from our house, and there are plenty of pediatricians within a ten mile radius. But Amy's daughter had been fairly ill her first year, too, and I thought if the pediatrician could keep up with her, she could keep up with KayTar, too. I didn't expect much. I wrote a list of all of my concerns and printed it up. I brought records of KayTar's intake. I documented everything. I was ready to push for answers, but I never had to. She met KayTar and took notice, without much assistance from me at all. She saw everything, without me making mention of it. It was a huge day for us. A turning point. At the time I felt relieved and horrified all at once. I knew things weren't right, but the extent of it, I had no idea. It was the day my life changed for what might have been seen as for the worse, but in reality it was better than we ever could have hoped. The progress we've seen is miraculous, and I don't doubt for a second that we owe a great deal of it to our current pediatrician. And I still cannot thank her enough.

Plus, she's taught KayTar some mad medical skillz. ;)

Much better, indeed.

She did well last night, only waking once after I posted. She vomited again, but we were able to soothe her back to sleep. She slept right on through until 9 this morning. She's had a good morning, slightly more demanding that typical, and a bit more lazy, but that is to be expected. She has grabbed her forehead on a few occasions and say, "Eyes hurt." They've been dancing of their own accord still, but nothing else is happening, thankfully.

This morning she called out, "Mama!" and I went in her room to check her. She said, "A bah-wul (bottle) a-milk? Lay down a-pillow. OKAY!" Which roughly translated means, "Please fetch me a milk bottle while I lay here on this pillow." I did, of course, and she then told me, "Go sleep. Close door. Goo-night." Which translates to "Get out, I'm going back to sleep now."

She ate yogurt this morning, although she wouldn't go for any table food, sadly. She's been drinking well and all in all everything is just fine. The episode passed without too much fanfare and I'm feeling lucky today because of it. She's had ragers in the past, so when they don't hurt much, it makes me feel better. It is still stressful and sad and I never feel relief until we are sure it is over, but it is easier when it doesn't put her in unbearable pain. Yesterday most of her discomfort seemed to stem from the eye movements and nausea rather than any real pain. Whatever the case, we're just glad it is done.

KayTar performing an interpretive dance entitled, "Pain, Pain, Go Away."

In retrospect, I realized I double-jinxed us all. On Saturday, I openly discussed the recent lack of episodes. Then Sunday, I took down the blankets we had put up in KayTar's bedroom windows to darken it, because I was tired of seeing them there. I may or may not have said, "She hasn't had one in ages, why are we leaving these things up?" Ack, ack, ack. Roughly 6 hours later, BAM. "Here is the episode you requested." I'll learn one of these days.

On a BubTar note, he received an award at school today! Every day, the teacher gives out an award, different awards on different days, I think. Last week he received "I Did My Best Today!" which was nice after having a day last week where he was in a spot of trouble. Tpday, he received "Quiet as a Mouse!" which we had given up hope on. He just isn't a quiet kiddo and we were perfectly happy that he was doing his best, whether it qualified as being quiet as a mouse or not. But then today he surprised us! What a good boy, he is. He especially likes that the whole class claps for him when he gets an award. Kindergarten is a hit so far! You know, except all the germs. I had a meeting with his teacher last week and she just bragged on him. He's doing great academically, and he's really only been in trouble the one time, so far. His favorite thing about Kinder is the science experiments they do each Friday. On Community Helpers day, he told her that he wants to be a babysitter, because he is SO good with helping with his sister. And he's right, he is an excellent helper. His teacher told me "He just has the sweetest little heart, I'm enjoying him so much in class." She also mentioned he's having a bit of trouble paying attention, although it isn't affecting his learning. We've always known he can be a bit of a space cadet from time to time; he comes by it honestly, Josh can be one, too. She said she would watch it closely to be sure he doesn't start to miss things in class, but Kindergarten is definitely off to a good start and we are so proud of our big guy.

Quiet is evidently his super SECRET power, the one he can't use in front of others. ;)

It was a good run...

69 days, no episode. Until today.

I had stopped thinking about it, stopped wondering every day, "Is this the day?" I even felt far enough removed from it that yesterday I discussed how long it had been. I didn't even know how many days exactly, because I had stopped counting. We used to live by the calendar. Every 15 days we knew what would soon be happening. A long break is deceiving, it tricks you into thinking it might all be over. I know all about the medical jinx, but my hope just got away from me.

She's had pretty concentrated eye deviations for the past 5 days, but we don't even know what those are. We're still waiting on the EEG results from a month ago.

Tonight, we went to eat dinner with Josh's family. KayTar was having a blast running around (well, her version of running) with BubTar and Josh's littlest sister. She was being social and silly and fun, all the things she should be. Then she walked into the living room, her eyes darted up and over, like that have done so many times this week, and she slowly fell to her knees. She laid her head on the carpet, bending as though she might be in prayer. She stayed there for a moment and then she stood up and drunkenly staggered to me. Her limbs were uncoordinated and her gait was choppy and much wider than normal. She collapsed into my arms and squeezed me, nuzzling her head into my shoulder. She held on for dear life for another minute or two and then got down. She sat on the floor and played with a toy, but soon slumped over and wanted to be held.

"Do you need me to hold you?"

"Hold you?" Her drunken eyes flitted up toward my face and she tried to raise her arms.

I held her and she burrowed in once more. She broke out in a sweat, her whole head suddenly damp, and her eyes started rolling. She was having difficulty opening them and keeping them open. She was incoherent. She started to gag and whimper, she couldn't lift her head. My in-laws packed up dinner for us and we left. KayTar cried and vomited on the way home. She asked for a napkin for her face, poor dear.

We gave her medicine when we got home, and after emptying her stomach, she fell asleep. She is resting here in the dark beside me right now. I just hope she can sleep through.

Earlier today, eating dry cereal for the first time.

This Kid...

Ate 1/2 of a breakfast sausage, along with a stage 3 oatmeal and fruit jar for breakfast;

Ate 3/4 of a cut up hotdog for lunch that she fed to herself, using a fork;

Stuck her hand right into cake frosting;

Didn't throw up once today.

And the parents rejoiced.

[I know she's had these little leaps before and they haven't stuck, but it is so exciting for us, regardless. We do think one of these days (maybe today!) it will start to stick and the more days she is willing to attempt it, the better. You know the old saying, "Practice makes for reduced oral sensitivities." Wait, maybe that isn't the old saying, but it does have a nice ring to it, doesn't it?]

Edited to add:

This morning she ate a yogurt (as per her usual) with an entire crustless piece of wheat bread cut into squares.

For lunch she ate an entire cut up turkey dog, plus roughly 3.5 ounces of REAL chopped up green beans (as in, NOT PUREED) with ketchup.

Holy freaking crap. This is blowing my mind.

A Wordy Post on Words.

BubandPie asked a question regarding the ability to relate experiences in the comments of my previous post (if you haven't read it, you might want to read it before this one). I started to answer her in email form, but it grew of its own accord into a blog post. I hit on a few examples of the subtle shifts in KayTar's language and I thought it might be helpful to share. I still don't think my explanations can really give an accurate picture of how different her language skills are, but it might just give you a peek at what it can be like.

The skill of relating experiences covers a broad area. Basically, it has to do with their ability to relay a story to you. For example "BubTar hit me!" or "KayTar go (went) outside." KayTar cannot do this, but she does something that almost mirrors it. Remember when we went on the walk the other day and I said she continued to talk about it? That was a true statement, but she was not talking about it to us, she was talking to herself. She wasn't trying to relate the experience, she was replaying it for herself, word for word as it happened. "I see cat! Where cat? Meow." and so on. An observer might say, "She's telling you she saw a cat! That counts!" but it doesn't actually count, because she is just rehearsing the exact same scene to herself. That falls under echolalia/scripting rather than relating experiences; my hearing about it the experience is just a by-product from watching her recreate the scene for herself. We are in no way involved in the equation, unless I had a part in the initial activity, then she will expect me to repeat my lines, or echo her lines. She never purposefully relates and experience to me. She doesn't know how to, and truly, she doesn't feel the need to do so.

Remember in the Party in My Crib post where KayTar conveyed to me what was happening? As in, "Fall down! Mama! Fall DOWN!" when her Chicken went MIA? What I didn't include write is that I went in her room due to her crying out "Chicken! WAAAAAAHHHHH! Chicken!" about 10 times before that exchange. I found Chicken on the floor and said, "Oh no. Did Chicken fall down? Yes, Chicken fall down. Can you say that? Say 'Chicken fall down.'" and had her copy me each time I went in. It eventually evolved into "Fall down! Mama! Fall down!" because she knew that is what I wanted her to say. She wasn't spontaneously telling me what happened, she was repeating what I taught her to say to elicit a response from me. If I had said, "Did Chicken fall down?" she couldn't and wouldn't respond with "Yes." she would parrot "Fall down." (which you will notice are the last two words I said, not a spontaneous reply either) because she doesn't understand what really happened, she just memorized what she is SUPPOSED to say. Much like when she says "A-gah ka-sanks." when she tries to give me something and I prompt, "What do you say?" she adjusts it to "Take it!" because that is the expected set of words for the occassion, not because she really grasps the meaning.

Another difference I've mentioned before is that she can't answer the questions, "What?" or "Why?" even with the aid of her scripting. She just can't fathom it at all. She just parrots the questions right back at us. It makes these conversations fun:

Her: Help.

Me: Help what?

Her: Help PLEASE.

Me: No, help please WHAT? What do you want help with?

Her: Help please.

Me: What are you doing? What do you want me to do?

Her: Do.

Me: Do you need help?

Her: Help!

Me: Why do you need help?

Her: Help.

Me: Do you want me to help you?

Her: Help you!

Me: No, Mommy help KayTar....what?

Her: Help KayTar.

Me: Help KayTar what?

Her: Help KayTar please.

Me: What do you need Mommy to do?

Her: Mommy-a-do.

Me: Show me.

Her: Show me.

Me: I don't know, baby.

Her: *long pause* Help please!

Me: *pulling hair out at roots*

She has recently started to come up to us and say, "Walk!" and walk away expecting us to follow her. She glances over her shoulder to make sure we are following and then she takes us to what she needs or wants. She can't do it when asked, "Show me." or "What?" but she takes action of her own accord because of the deficits in her verbal skills. The action is not tied to any words, it just stems from her reaching her frustration level with the lack of communication and has learned that making us follow her is easier than trying to use words she doesn't truly understand. I'm trying to attach words to it for her, by saying, "Are you showing me?" (to which she replies, "Show-n me.") while we are walking or "What do you want help with? Oh! You want help with your puzzle. Say 'Help with puzzle!'" Eventually she will make the connections.

I know it sounds incredibly picky and perhaps like it shouldn't matter at all, but it extremely important when interacting with her. There is a forced/halted feel to our interactions. I have to say the exact same things to get a response. It feels like she and I are in a play everyday where the lines don't change. The action sequences change, but the same lines are applied no matter what. Or, like I've mentioned before, it is like talking to a foreigner who has a mental English translation dictionary full of "helpful phrases" that are used over and over. It is a huge list at this point, large enough to fool people into thinking it is fully understood, purposeful speech, but it is still largely regurgitation.

An example of a conversation she only understands one way:

Me: What is your name?

Her: Name.

Me: Who are you?

Her: A-jou. (are you)

Me: *touching her chest with my pointer finger* Who is this?"

Her: TiTar! (KayTar!)

Explaining this makes me feel kind of neurotic, like I am looking for something to be wrong when there really isn't. BubandPie hit the nail on the head the other day in this post, "I feel vaguely embarrassed, as if I've been revealed as some sort of Munchhausen-by-proxy mother, seeking attention by obsessing over her child's minor quirks." But the truth is, there is something wrong, it just hides itself well. KayTar has mastered "Fake it 'til you make it." This causes problems in a myriad of ways, because unlike 6 months ago when she had only a few words and her delays were obvious, now they are subversive. It takes a very detailed and close look at her to realize what she is doing. Her echolalia is not the meaningless repetition of a word over and over for self-stimming purposes, it is intricate. She has hundreds of memorized scripts for various situations and has learned to use them well without really fully understanding them. She does understand certain things, I don't mean to imply she is completely clueless with her speech. However, for each thing she does understand there are two to three additional things that she can give the appearance of understanding without really grasping it. The biggest issue will be qualifying for district services, I'm going to have to push for a really thorough evaluation or it could easily be missed. The ST said if she doesn't continue to receive services it will definitely affect her academics. She also said that most people will continue to think KayTar is age appropriate and therefore have unrealistic expectations of her abilities. The girl puts on a good show! It reinforces how intelligent she is, because even though she really doesn't understand language, she has found a method to use it as a tool in spite of that. Most toddlers understand more than they can speak, KayTar speaks more than she understands.

This morning we had the following exchange:

Her: Tiny! Tiny duck.

Me: Is your duck tiny?

Her: Tiny duck.

Me: Is tiny big or little?

Her: Wittle.

Me: Is tiny little or big?

Her: Big.



And this one as well:

Me: KayTar, get the remote.

Her: A-mote. *mimicking button pushing with her thumb* (I don't know if this is an actual sign or not. LOL.)

Me: Can you get it? It is on the table. *pointing*

Her: Table *pointing in same direction, but at nothing*

Me: It is black, see it?

Her: See it.

Me: Can you get it?

Her: Get it.

BubTar: Here's the remote, Mom.

He gets tired of our jabbering at times and steps in to "help". The point of course was not my inability to get the remote, it was to see if KayTar could figure how to follow the command, even if I had to continue to give additional clues or even walk over and put my hand on it to help her find it.

The solution is of course, continued speech therapy, as well as continued work with her at home. The goal is now to teach her concepts rather than word absorption; instead of getting her to just say "Blue block." I need to ask, "Is the blue block INSIDE the box or outside the box?" or "Are the fish in the water or in the sky?" or "Do birds fly or swim?". When reading books, I need to ask, "Is the boy jumping or sleeping?" She also suggested taking a series of photographs when we are out and about and print them later for KayTar to look through with us while we give her words to describe the experience, "We went to the park. KayTar went down the slide. We saw a flower. We walked home." She said initially, she will regurgitate, but eventually the concepts will sink in and she will become competent in in her speech. Right now, if I had to give a percentage of her vocabulary she truly understands, I'd have a really hard time. She understands 100% of labeling...but concepts are much lower, definitely below 50%, maybe closer to 10% even at this moment in time. I'd say out of everything that comes out of her mouth in a day, she truly understands an average of 50% of it, maybe. These are super rough approximations, though...definitely not scientific in anyway.

In spite of this, she surprises me at times. Last night she had her half empty block crate and she said, "Fish-e-water! Splash splash!" clearly pretending her hand was a fish and the crate was a tank. Later she held her hand like a fishing pole and said "Fishing! Reeee big fish!" and held her hand up like she had caught something. And still later, she pretended the crate was some sort of trough and she pretended to eat out of it much like a pig...this one evolved into it being a box of sandwiches, "Mmmm. Sa-wich! Eat it." Whether the words are from something she has previously witnessed or not (I have no clue if they were), she came up with the imaginative situations all on her own, pretending that something clearly meant for one thing served several totally different purposes. She played out several different scenarios using the same prop, with no suggestion from anyone as to what it might be. This is the first 100% spontaneous imaginative play I've ever seen her engage in. It was pretty amazing. Today she did it again with Legos and the top of the toybox. The Legos were a car, and the toybox was the road. "I racing. Vroom vroom. Racing." She also called the living room a "playground" and pretended to go down a slide and swing on a swing, exclaiming "Wheee!". New things are emerging all the time for her.

Does your child engage in imaginative play, such as pretending to care for dolls? Yes!

Again, if you finished this, gold star! I don't know how much sense it made for people who haven't actually interacted with her, but it was the best summary I could give of what her verbal deficits are like and what they mean for us in day to day situations. It all still feels very jumbled and blurred, but I hope this made things a bit clearer. I didn't include examples of her accurate speech, because I was trying to represent the portions that stand out as abnormal. Her speech is not 100% abnormal, and I don't want to mislead anyone into thinking it is. I also don't mean for this to downplay her verbal explosion in any way, because that is extremely exciting and we couldn't be more thrilled about it. This is just the other side of the coin for her, what it means to have a vocabulary that exceeds her understanding and how it plays out in her daily life. It is important that I learn to explain these things, because soon, I'll be explaining it to the district evaluators and a new set of therapists and teachers. I hope by that time I've learned to say it in fewer words. ;)

Evaluation Time!

Last year, age 19 months.
(Bold denotes qualifying delay/atypical development)

Cognition: 15-17 months; 2-4 months behind
Expressive Language: 13 months; 6 months behind
Gross Motor: 10-11 months; 8-9 months behind
Fine Motor: 18 months; age level
Social: 16-18 months; 0-2 months behind
Self-Help: 16-17 months; 2-3 months behind


This year, age 31 months.

Cognition: 31-32 months; age level
Expressive Language: 28-29 months; 2-3 months behind*
Gross Motor: 25 months; 6 months behind
Fine Motor: 31 months; age level
Social: 31 months; age level
Self-help: 24-26 months; 5-7 months behind


Long story short, KayTar will continue to receive services until she switches into the district in February. Everything will remain the same with the addition of HI services. HI services are hearing impaired services with a teacher from the district. I was told it streamlines the transfer when there is already someone from the school involved in KayTar's therapy regimen, and because she qualifies for this, it is the best way to start the transition. Her delays are slightly smaller than they were last year, except for self-help which has actually gotten larger. She still qualifies in the same areas, regardless of the slight shifts.

*Expressive language was the tricky one. The therapist who evaluated her is not her normal ST, but she was extremely thorough and knowledgeable. She was able to identify those areas of KayTar's language development that nag at me. There is a feeling of something being not quite right, but for me it is hard to really pinpoint. I attempted to do so in this post, though. She said that to the outside observer, someone who is not trained as a speech therapist or who does not work with KayTar daily, she will appear to have normal speech abilities at this point. KayTar accomplishes this through an impressive use of echolalia and scripting. She is catching up in number of words and length of sentence, too. But she does not have the following skills:

Relates experiences using phrases
Answers open ended questions

The fluidity of language does not flow through her; it is cut and pasted from prior instances.

She also has articulation difficulties when using multiple words. It all become one word. Like "What color is it?" it all comes out together in a blur, because she thinks of it as one word. "Whacasit?"

She can't follow multi-step commands or understand concepts that are not concrete, either. A good example of this is her hearing tests. Most children by this age are able to be tested in a sound booth, but because KayTar cannot understand the instructions or respond reliably, it nulls the test.

It is all very intricate and difficult to explain, but the good news was that a new therapist coming into contact with KayTar for the first time was able to see it without my mentioning it. When people interact with KayTar remark that she is caught up speech-wise, I alway cringe internally, because I know that things aren't quite right, although they might appear that way to the casual observer. It makes me feel a wee bit neurotic, to say, "Well, not exactly." Trying to explain it is difficult, especially when I can't articulate exactly what is or is not happening properly. Suffice it to say, the ST said to keep up the speech therapy and that twice a week will be excellent for her. She also highly recommended the HI program as well, since they tackle speech as well. She made a few suggestions for the transition into the district and things to request at her IEP (like an FM system).

She's doing great, though, and making strides. Having all of her ECI therapists here, with the addition of two new ones was great fun. KayTar thought it was party and she had a blast going from one to the next; playing, laughing, and cuddling. They oohed and ahhed over how intelligent she is and bragged about her reading and phonics skills. It was nice to hear them all discussing her with such pride. A year ago, she couldn't stand them for the most part, and now they are great friends. It is heartwarming to watch. All in all, it went really well.

Last year. My slumpy little baby.

This year. Big girl!
Among her vast and varied accomplishments, she has also grown an impressive head of hair this year.

Party in my Crib, 12am.

KayTar used to have one and only one lovey. Her Gee.



Then she fell in love with Dolly in a toy aisle at the store and she was added to the list of Must Haves.


Dolly sporting her heart monitor (she actually has a heart on her dress, directly under the monitor) and hospital bracelet.

Soon after Dolly was added, KayTar found Bunny in the depths of the toybox. Bunny was BubTar's as a baby. Bunny is a pull-string musical toy, who happens to be Peter Rabbit. It hung on BubTar's crib and played for him nightly, and then eventually was tied to his toddler bed where it continued to serenade him...poor Peter was discarded sometime around his move to the twin bed he now inhabits. KayTar decided Bunny was also a Must Have.

And thus, the Bedtime Brigade was born!

On day outings, we typically only bring Gee, because she always requires Gee. Bunny and Dolly can stay in the crib some days, other days they have to come along. We're never really sure how it will play out. We just make sure everyone gets tucked into bed at night and life runs smoothly for the most part.

Well, last night, KayTar used her burgeoning verbal skills to request additional bedtime friends, here is the guest list to the Party in her Crib:

Gee
Dolly
Bunny
Baby
That One Bunny (different from Bunny)
Chicken, the tiny Rooster from the top of her Little People farm
Duck
Fish

Chicken kept jumping out of the crib, causing KayTar to cry out, "Fall down! Mama! FALL DOWN!"

Baby kept crying, causing KayTar to shout, "Stop crying. Peep! Goo-night Baby."

Duck and Fish took turns hiding underneath Gee, causing KayTar to lament, "Duck?! DUUUUUUCK! Where? Where DUCK? Fiiiish! Where? Where FIIIISH?"

That One Bunny kept hopping onto the dresser, mysteriously, "That One Bunny? Geeet it!"

Gee wouldn't stay on her feet properly, "Gee! Peet! GEE! Mama! Peet! Peet!"

Thankfully, Dolly and Bunny were exhausted from their full day and went right to sleep. I can only imagine what mischief they might have gotten into.

And so, essentially, I went in and out of her room roughly 30 times between laying her down and the time she actually fell asleep.

While exhausting, I am getting a kick out of this sudden leap of cognitive and verbal skills. It is quite a window into her world, and I wonder how frustrating it has been for her to not have the skills to communicate these seemingly silly, but important to her things before now.

I think the late night also had quite a bit to do with the inhaler. While it is still proving helpful in avoiding the nightly coughing fits, it is not helping her sleep. I think it is making her feel jittery. I know my inhaler always does that to me. The first few days she slept like a champ, finally back to a normal bedtime, but I think that was pure exhaustion from not sleeping well for week prior. Now that her body has filled the reserves, she is having a rough time falling asleep. She takes a dose of her inhaler directly before nap, and it has taken her over an hour to fall asleep for 2-3 days at naptime, and a dose directly before bed and we've seen bedtime scoot back and hour or two as well. There is nothing to be done about it, really. With medicine every four hours, it doesn't leave much wiggle room. If she doesn't take the next dose on time before sleeping, she won't sleep anyway. She still sounds fairly awful when she gets to coughing or exerts herself too much, so dropping the meds isn't an option. She will adjust, as she does to all things, and until then the party will continue.

Care to join us?

Sleeping off the Hangover.
Participants, clockwise: Duck, Baby, That One Bunny, Dolly, Gee, KayTar
Not pictured: Bunny (possibly hiding under Gee), Fish, Chicken (who likely jumped out of bed again)

Warning: All night partying may result in loss of pants.

Or maybe she just soaked through her diaper at 2am. ;)

****

We have her great big evaluation today, the entire therapy team comes here to evaluate at once...so wish us luck!

Sunlight Peeks Through

The weather is finally tolerable here, at least in the evenings and mornings, and so tonight KayTar and I decided to go out for another early evening walk. Yesterday's was such a big hit, I'm still hearing about it. "See cat. Where cat? Cat! Meow!" You'd think she'd never seen a cat before, but I guess repeated exposure doesn't make them any less marvelous to admiring little eyes. Perhaps it is the elusive quality of cats that draws children in, they are frequently in sight, but rarely in reach. Dogs on the other hand are all too accessible. BORING. When we were in the hospital last time, they brought dogs around for pet therapy and KayTar would have none of it. "No dog! Bye!" in her shrill chirp. I think she would have preferred feline visitors.



We looked around for orange kitty, but he was out carousing. The breeze was blowing and the sun was just warm enough, so we walked back home to invite Josh and BubTar to accompany us to the nearby park. It feels like it has been months since we've been outdoors, like the camping trip was our last hurrah and we've been snowed in since then. Instead of being trapped in the house by the external force of snow, we were trapped indoors because of the internal force of illness. It was so nice to feel the sunlight on my skin. KayTar made it three or four houses down the block before descending into the grunt-like breathing that signifies she is having trouble getting enough air. I had to scoop her up against her will and carry her the rest of the way.


Last Thursday she started having difficulty breathing, she was grunting every time she took a breath, her skin was retracting around her ribcage, she couldn't manage to drink her bottle and keep up with breathing simultaneously. We watched it on Thursday, because her color was good and we saw a bit of improvement after naptime, but she wasn't doing good enough by Friday for us to chance the weekend. The pediatrician said she was wheezing and her left lung sounded a bit worse than the right. She gave us a script for an inhaler and spacer mask and KayTar has been taking 4 puffs every 4 hours. The first four times she took it, she emptied her stomach all over me, but now she is an old pro at it. "Messin time? Count!" Because we count her breaths while we hold the mask on. She plops into her Baby Papasan willingly and takes her medicine like a big girl. It has made such a difference, not only with the apparent breathing difficulties, but at night, too. She is finally not coughing until she vomits at night, and she is going to bed at a decent hour again. I hate to think she's been having breathing problems for a month and I only just caught on. Ack. But she is sounding better now, so that is what matters, I suppose. She still sounds junkie in the morning and anytime she exerts herself, but for the most part she is doing well with it. I think we overdid it by going to the park, because in spite of the medicine, she's been having a rough go of it this evening. She has been coughing and grunting quite a bit, even though she had just had a dose of medicine an hour before we went outside.

We had a good time at the park, lots of swinging and sliding. We stayed just long enough to get a quick fix and then headed home. Even though, it was a bit much for KayTar, we still enjoyed it. Just being out in the sun together for a bit felt good. It felt healthy, even though we aren't quite there yet.

Overheard yesterday...

After vomiting all morning, BubTar begged for a cracker. He threw them up. He begged for more crackers, so we gave him one and told him to eat it so slowly. About ten minutes later, he called me in to the Quarantine Room. He said, "Mom! I prayed to GOD and asked Him to not let me throw up this cracker! AND I DIDN'T!"

He didn't throw up the rest of the day. At bedtime he whispered, "Mom, I think it's a miracle!"

****

KayTar and I went for a walk yesterday. It was a short walk, because she started having coughing fits after about 10 minutes, but it was lovely outside. And she talked the entire time.

"I see tree."

"See leaf."

"I see cat. Meow."

"Where cat? Ight dere!"

"Reeee big tree. Touch it. Touch reeee big tree."

"Grass. Ground."

"Big car."

"House."

****

Last night Josh and I were watching a National Geographic program called "Inside the Living Body". It was discussing the chemical aspects of choosing a partner, how pheromones send signals about a person's genetic makeup to be interpreted by the other person's olfactory senses to decide whether genetically a person is a good match for you, considering genetic markers to make the best possible match for your children, health-wise. Josh looked at me and said, "Well, one of our noses wasn't working properly, obviously."

Ain't that the truth.

[Almost] Silent Sunday: The Streak Continues

[His*]


[Hers]

*Stripped bed and non-matching pajamas brought to you by Vomit, my friendly morning wakeup call.

Pausing for Beauty

Let's rewind a bit, shall we? Sunday I had several hours to myself, reading, enjoying coffee, getting a haircut. Monday night, I went out for coffee with friends, no children. And then Tuesday, I received the most beautiful gift. The beauty of the gift was only outdone by the beauty of the heart that gave it.


These arrived on my doorstep Tuesday afternoon when everything matched their beauty. KayTar was healthy, I had been able to take a bit of a breather, life was realigning itself to some semblance of normal, and the flowers were the beautiful icing on the cake. I thought my heart would burst.

And then, as it always seems to happen, KayTar started to get sick and the dark cloud crept in once more. I felt overwhelmed immediately. The good; the beauty that I had found in those few days vanished as quickly as it had come. But the flowers were blooming, bigger and brighter each day in spite of it all.


Each time I enter the kitchen, where they sit perched near the window, I pause to look at them. At times, I pull them down off the counter just to feel the weight of them in my hands, the weight of someone's thoughtfulness right there in my kitchen. The kitchen is the first place I go each morning and usually the last place I visit each night. Each day, the flowers whisper good morning and goodnight. When KayTar wakes in the night, I stumble in, half-blind to get her a drink. The flowers wink at me, through my squinted, tired eyes; reminding me that beauty exists even here, in the wee hours of the morning...even when everything else sleeps soundly.







The rustle of the leaves, the velvet of the petals, the vibrancy of the colors work together to speak out to me in a voice I recognize, saying, "The beauty is always there, you just have to remember how to look for it."

And I whisper back to them, "Thank you. Thank you."

Nightly Ritual

We stood in the bathroom, debating whether medication was the route to go.

"If we give it to her, she's just going to throw up. She just took a bath and drank some Pediasure."

"If we don't give it to her, she's going to cough until she throws up. That will mean new pajamas, new sheets, another bath, and several more hours of wakefulness."

"I don't know."

"Well, we need to decide something."

"I don't know which is better."

"We just---"

Just then, the child standing between us vomited onto the bathroom floor, effectively ending the matter at hand.

"Yicky yicky."

"Did you throw up, sweetie?"

"Frow up. Yicky yicky. 'Cue me." (excuse me)

We scattered in the well-worn way we always do. Nearly mechanical, we can do it in our sleep. I fetched the wipes, Josh stripped her down. He wiped her off and passed her off to me. He scrubbed the bathroom floor, while I finished cleaning her and went to get a fresh pair of pajamas.

"Not DAH ONE!" She said, shrill with conviction when she surveyed the pajamas I chose. "Poinkoink one." (pink)

"This one? THIS pink one?" I asked, showing her the other options.

"This one?" she parroted, unsure, watching me for a clue.

I tried one of our word games, "Which one?"

Her face lit up in recognition, "Which one, which one? A dah one!" pointing at one pair of pink pajamas.

"You want to wear THESE pink ones."

Shaking with excitement, "Poinkoink ones!"

Once she was in her bed, quietly watching a LeapFrog video on the computer (vomiting makes her too wired for sleep, but activity just gets it going again), I collapsed onto the sofa next to Josh and picked up my novel. I felt Josh peering at me, through the back of it and looked up to meet his eyes. Every bit of silence in the room screamed, "Will is always be this way?" Instead, he spoke.

"How does it even happen?"

"I thought we'd have ten days at least, with the antibiotics shot in her system. I know it doesn't do anything for viruses, but you'd think we could get TEN DAYS."

"Does BubTar bring the germs home, without ever catching them himself? Other than the rash, he hasn't been sick. And well, KayTar, she's been sick since he started school, is there anything to be done about it?"

"Just wait. It will have to stop sometime, won't it? She can't just stay sick for 10 months of the year."

She cried out, ending the conversation. Josh went to check on her. I remembered BubTar needed a load of laundry done and went to start it. Josh pops in with KayTar's pillowcase and shirt, the coveted poinkoink one.

"Toss these in, too."

"She threw up again?"

"A little, not too bad. It only got on the pillow."

He left to finish tending to KayTar. I let the washer top slam of its own volition.

"Dammit."

Around 11:45, we turned out her lights and huddled quietly on the sofa. Going to bed is too hopeful, too risky, too agitating when you might be stripping beds and cleaning vomit in a few minutes. I went back to my book; he played a video game on mute.

"Ten days..." I whispered, from behind my book. "Couldn't we have had ten days?"

He patted my leg to say, I know, I understand.

Minutes passed.

Quiet prevailed.

We staggered off to bed.