Friday, November 30, 2007

This is like a Brady Bunch blog...

Except that instead of "Marsha, Marsha, Marsha!" it is "KayTar, KayTar, KayTar!", and so today I am giving BubTar the floor. I started this blog because of KayTar, to document this craziness, to give my brain some place to do the sorting of it all. I feel compelled to document and analyze happenings with her, it keeps me on an even keel. I drop those sorts of things off here, so I don't drag them around with me full time. Do you ever wake up in the night, thinking of the fifty things you have to take care of the next day? Once you start thinking about it, you just can't go back to sleep until you get up and write it all on paper so you are sure it will be taken care of. Sometimes, that is what this blog is for me...the paper I write on at 2am to clear my mind enough to behave like a normal person. Because of that, BubTar seems to get the short end of the stick around here, but I'd like it to be known that he doesn't get the short stick in life. There is a bit of attention skewing, because of forced one-on-one time, like therapy or doctor's visits, but for the most part our house is like anyone else's. I don't know that I communicate that enough of my blog. Even though she monopolizes blogtime, she doesn't monopolize real life time.




We lucked out with our boy. From birth, he was easy going. He ate well, slept well, he didn't demand to be held full time. I can only remember one day, during that six week postpartum period, that I sobbed my eyes out. My mom had come over the day before and rocked him all day. He didn't sleep that night, the next morning was my 6 week check-up at 8am and we hadn't slept. Then we got home and he wouldn't nap. That was the only day I called Josh begging him to come home and help. He took his lunch break at home that day, and I laid in the bedroom, wishing to sleep, but instead listening to every peep BubTar made from the next room. Good times. He was healthy, if you exclude the ear infections. OH! THE EAR INFECTIONS! If I had blogged back then, it would have been named the Ear Infection Blog or something similar, I think. He wasn't a typical presenter, no pain, no fever, no ear tugging. His first symptom was always vomiting in our bed. Without fail, it meant an EI. The doctor always looked at me skeptically, but sure enough, I was always right. He out grew the EI's around 2, though and hasn't had any sort of chronic problems since, only the sort that follow him home from school, a loving gift from a classmate.



He is still that easy going child, who sleeps well and is friendly. At school, he is well-liked, so well-liked that he frequently comes home with a light change from chattering too much with his buddies. Yesterday, for example, he was wrestling in the bathroom. On the way home, I exlpained "BubTar, someone could have gotten hurt!" He replied, "Well, no one DID get hurt. There is only a hard floor and a hard wall and we did not hit our heads." Which I countered, "Not this time, but maybe the next time." And he replied, "But no one DID get hurt, so no one CAN get hurt." Oh, the logic of 5 year olds. His teacher adores him, regardless of the mild trouble he gets himself into, because he is so darn charming. His little smile and those big eyes and lashes, coupled with his personality is a near DEADLY level of charming.



He is sensitive, oh Lord, is he sensitive. Those big blue eyes have tears rolling out of them quite a bit more than is necessary. Usually in response to the word "No." or the enforcement of time restraints on his various screen time pursuits. We are working on eliminating this type of crying and recently we've seen a bit of improvement. The other type of crying, REAL crying, we have no issue with though, and it always surprises me what upsets him. Last night, for example, he somehow smuggled a yard stick into his bed. He had been in bed for about 10 minutes when I heard a HUGE snap! followed by the sound of weeping. So I jaunted up the stairs to check on him. He was sitting in bed, broken yard stick in hand, sobbing his wee little eyes out. Turns out he was putting his knee in the middle of the yardstick and pulling with his hands and it broke. He looked up at me, all tearful and sad, and said "Should I be ashamed?" and I must admit, I let out a chuckle and said, "Ashamed? For breaking this? I don't think so, but I do think you need to be more careful with things that don't belong to you." And he said, "(sniffle, snuffle) But will Daddy be VERY upset with me?" And again, I chuckled, and said, "No, it is just a yardstick, we have others, but some things aren't so replaceable so you need to be respectful of your things and especially of other people's belongings." He sniffled into my shoulder a while longer and then went to sleep. A broken yardstick, who would've thought.



He's shy, or at least plays at being shy. He prefers to stay home rather than go out usually, especially if we will be seeing non-familial types. He agreed to come on a playdate with Julie and her P's only because he knew whoever went with me was able to skip nap. On the way, he assured me he would not be playing. But he did, and he had a great time and came home planning the follow-up visit, "But with less sand," he said. At school birthday parties, he spends his time with his head in my lap or with his whole body wrapped around my leg. But when he sees these same children at school, he is little wild man. Funny how a change of scenery causes such a change in behavior. H resists going to dinner, even with family friends he has known since birth, stating "I'm too shy." as a reason, but once we are there he is challenging people to eating contests and loudly discussing the state of Kindergarten. Sometimes he is even "too shy" to visit the grandparents, but I really think that is his way of saying he'd prefer to be home instead. Sometimes we give in. Sometimes we make him stick it out. It depends on how committed we are and how adamant he is.



And that brings us to his big brotherhood. He really is the most tolerant older brother KayTar could have had. Even the ceaseless mimicking has a place with him. He loves to have a parrot who repeats whatever he'd like to throw her way. He also appreciates that she will participate in any pretend play he would like to organize and she will do it exactly his way. He is patient and kind with her. We've had exactly one instance of him being physically rough with her, ever. He reaches his frustration level much later in the game than most. He enjoys the audience, the built-in friendship, the adoration she gives. He helps with her in the ways he can, and inquires about her therapies after he gets home from school. Wednesday, when she graduated, he said, "Three cheers for KayTar, hip-hip HOORAY!" Yesterday when she wouldn't participate in PT, he stepped in and participated to get her involved. It worked like a charm. There are millions of worries about how the typical child in a family that has a less-than-typical will fare, but honestly, the two of them love each other and I think on a normal day, there is no rivalry at all. He loves that little girlie and she him, and I think that is a gift for them both.





He is silly. Constantly trying out jokes, five year olds and their humor. He makes me laugh daily. He won't settle for jokes that work, he has to modify them and make them his own, which makes the decidedly UNfunny, but endearing in their own way. Teaching him the art of humor is not all that easy! He still asks for cuddles, but he can't contain the sillies when I stay in bed with him. It becomes all about the jokes or wiggles or stories. At some point I have to leave the room or he'd never get to sleep. But sometimes I sneak back in once he is asleep and cuddle with him for a while, watching the rise and fall of his chest, the curve of his cheek, the fluttering of his eyelashes...and I just think, "How in the world did I get so lucky?"



Thursday, November 29, 2007

Overheard in the 'Tar house

Last night:

KayTar walks in, mildly pouting, and stops in front of me.

"I saaaad (sniffle) a-cause.....(long pause)......(crosses arms and sticks out lower lip) NO BED!"

translation: I'm sad because I don't want to go to bed.

That was a because statement! HUGE! Huge, I tell ya. That is a first for her. It still had a bit of that halted feeling of mimicry, she hears BubTar say this same thing almost nightly (pout and all, man, BubTar has the pouting down pat, always has), but even so, VERY advanced for her.

****

This morning she woke up early and was having a lot of eye pain, so I went in to snuggle her. I laid there for a while and then said, "Mommy is going to make her coffee." and she said, "Coffee? Yes or no? NO! No coffee, Mommy. Way down a KayTar." So we snuggled a while longer, until I was finally drifting off to sleep beside her and then I felt her small hand on my leg, "Come on, MomMom! I show you somesing....FUNNY! Come on, wes go. Cho-nch you? Cho-nch you see funny?"

Isn't that clever? It felt spontaneous, motivating me with the promise of funniness to get me to wake up and follow her. I think it was. Who knows, really. Her capacity to memorize is so far beyond anything we can keep track of, we never really know what is spontaneous speech. She says certain things over and over that have clearly been retained from something other than us and for the life of us we can't place it. One of which is toasting and saying "No worries!" she is doing that constantly, but we have no idea where it came from. Sometimes she also shouts, "Give me presents!" but she hasn't a clue what it means. She knows what presents are, but in the context of that sentence, there is zero comprehension, it isn't 3 separate words, it is ONE phrasing. It just sounds nice to her ears, I think, so she says it. The first time she said it, I replied, "Where did you learn that?" So now she shouts, "Give me presents! Where you learn dat?!" There are a million more that leave Josh and I shaking our heads saying, "Where did she get that?" on a daily basis. I don't think we'll ever figure them out,but that's just KayTar.

If she was an animal, she would be a parrot, for all the obvious reasons. Poor BubTar only really gets bothered by her when she is copying him relentlessly, which unfortunately is a daily occurrence. When Josh gets home from work, KayTar stands right next to BubTar while he talks about his day, she mimics everything, hand movements, body language, facial expressions and she stays only a half beat behind him. They are almost in sync. I've got to video it one of these days. It isn't limited to that, though, she probably spends half their time together studying and copying him, which to a five year old can get old fast, I'd imagine. He's a sport about it usually, unless he's trying to concentrate. We split them up if it starts to grate on his nerves, but there are times we can't help it, like in the car. We do what we can, though.

Even so, I do feel like we are hearing more spontaneous speech from her, especially during imaginative play. Last night she named my mother's Christmas tree lights after Sonic characters (Evidently little girls with big brothers absorb these interests, especially our little parrot) each colored light represented the corresponding colored character. Her pretend play is so fun to watch. She seems to be able to find her own words in those scenarios much more easily than when she is interacting with others. I'm not sure why. We are seeing change and growth daily in her speech, though, and it is really exciting to watch.

The BubTar and his shadow.
Alternately titled: The parrot and her Muse.


PS (largely unrelated and mostly for my recording purposes):
She sounded out the word "cooperation" at therapy yesterday when her therapist asked her to read a sign, "co-ooper-AFUN!" And this morning she sounded out "pregnant", "pre-n-ant". Not 100% correct, but DUDE. It blows my mind. Every time.

Wednesday, November 28, 2007

Wordless Wednesday: And the Winner is...



[Not so wordless update: KayTar graduated OT today! We are DONE! Her goals were to get on a table food diet (check!) and overcome gagging/vomiting in relation to tactile input (check!) and so unless we see regression in these areas, we are DONE with OT! Can I get a woohoo?! Yay KayTar!]

Tuesday, November 27, 2007

The end of another era...

Sigh. I fear the napping days in my household are coming to a close. BubTar has been a faithful napper since birth. He is five and a half. Yes, I know how lucky I am. KayTar is almost three and has been a faithful napper for the most part. Until recently.

Three out of five weekdays, they are no longer sleeping. Yesterday they napped. Today they are not. I am still putting them down, but they just aren't dozing off. On days like today I opt for quiet time in separate rooms. They lay down around 12:30, if they aren't asleep by 1:30-2, then we make the switch to quiet time. I pass out books or children's magazines and put music on for them in their respective rooms. Today BubTar is enjoying Christmas music and KayTar is dancing and singing to her old standby Laurie Berkner. I am still getting my break, but it just isn't the same as naptime.

Naptime can last for hours; one, two, sometimes even three hours of blissful solitude. Quiet time is limited. Conscious children are not quite as content as the unconscious variety. But at the same time, there is freedom in this new stage. If we have plans, we can opt out of nap and quiet time altogether without suffering too many consequences. Bedtime goes infinitely easier. We lay them down and they are out. On nights when KayTar naps, she lies in her bed until 11 or later, chatting and fussing. No nap night, she is out by 8:30 without a peep.

I wonder how much of this has to do with our recent vacation, our days have been slower and more restful, not much need for mid-day recuperation. Now that we are starting up again, I wonder if it will become necessary again. Regardless, I'll keep lying them down with opportunities to rest and modifying when it is clear nap isn't a happening thing. I'll just take cues from the wee ones. We'll see how it goes.

Speaking of vacation, now that we are back, we now have therapy all FIVE days per week. Monday through Friday, she has something every day. Deaf co-op, developmental therapy, occupational therapy, physical therapy, and speech therapy. Sigh. It is all good. It is just so much for one small girlie. But we only have three months of these services left and I want her to have the full benefit from them. Today she was ready for her therapist to leave almost from the time she got there. We were working on paperwork, so she didn't even interact with her much, but she was very clingy while she was here. Before she arrived, KayTar was saying, "Want B (therapist)? Yes or no? NO!" over and over. During the session, she said, "Bye doctors." a few times, which is the first I've heard of that in a little while. I suppose starting back is going to be a bit tricky for her, but I hope she will find her groove and enjoy therapy again. It really is fun, it is just play guided towards a specific goal. Nothing frightening about it. Perhaps the continued vacation from doctors will ease her mind a bit, too. It was a good start, though, and she's happily talking about seeing M (therapist) tomorrow, and that is a good sign.

Ready or not, here I come!

Monday, November 26, 2007

Jeopardy

Answers:

"Dear Tooth Fairy"

"Please answer the questions"

"What's your name?"

"Dropping the ball"

"Out with the old"

"What kind of ship never sinks? A friendship."

"(Viruses) can live on surfaces for days."

"Why is ice slippery?"

"Superheroes"

"Diapers are shaped for babies"

"Why do babies lose their hair?"

"The van rocks again."

Question:

What are things KayTar read to me from Wondertime magazine last night?

***

We restart therapy today. Wish the littlest 'Tar luck. I talked to her about it yesterday and she worked it into her imaginary play, "Come on Car. Go-a erapy a-day. Wes go." Here's hoping she's ready for it.

Cleaning out closets

Can you tell me how this...



Turns into this?

(yes, it is the same outfit from the first photo)


Ooof. My heart.

I spent the day yesterday cleaning out BubTar's closet, which was packed to the brim with almost 3 years worth of outgrown clothing, both his and KayTar's. I think it nearly killed me. The thought of giving away all of those clothes (minus the ones I cannot part with) that are supposed to nearly be filled with a baby by now was just so heartrending. We had a plan. We wanted to be done by 30. We wanted 5 little munchkins, spaced approximately like BubTar and KayTar, 2 years 10 months. KayTar is 2 years and 9 months old, and there is no new baby on the horizon. Nor should there be. I don't want to splinted already skewed attentions. Our finances are unexpectedly tight due to the fact that I gave up my job to stay home with KayTar. Let's not even broach the insurance issue. I make a miserable, miserable pregnant person. Miserable. I feel like a half-dead pod person for the first 6 months. I would be hard pressed to be pregnant and carry on KayTar's schedule. I'm also fairly sure they do not give you 6 weeks of maternity leave from your children's therapy schedule. I am going back to school soon. I want to go back to school. I want to work.

But I'm saying that I notice. I notice that there is no small body inside my body, no fluttering, no flailing limbs and tiny hiccups, no elbows and feet stretching against my skin. I notice that I am packing clothes up and sending them away rather than washing them and tucking them away inside a dresser to be used again soon. I notice KayTar's age, and I notice there is no one coming behind her to fill the newborn sized nightgowns that both she and BubTar once sleepily curled inside. I notice there is no longer anyone sleeping in the crib. I notice the ton of baby toys and paraphernalia that have been tucked away in the attic instead of being washed and put together for an impending arrival. I do notice.

A year ago it was easy to say we were done having children, things had really just begun to happen with KayTar and there was no way we wanted to bring another child into the mix. Our world was upside down and we had no way to right it again. But here, today, in the spaces that should be nearly ripe with new life, it is much more difficult to say the same thing. Because not only do I notice, I want. Not today, not tomorrow...but someday, I do want.

How could I not?

New BubTar.


New KayTar.

Sunday, November 25, 2007

A Song for Sunday, plus.

I know that it is the weekend and therefore song time, but first I have to digress a bit. KayTar is currently pretend playing with the Sonic the Hedgehog wallpaper on the laptop. It is going something like this:

Come on Songick!
Wes go play!
You okay Songick?
Wan Gee Songick?
You wan it, you wan some Gee?
Oh, Songick.
Go fishin Songick?
Come on!
Is best spot fishin! (standing on her step stool, fake fishing)
Hello Songick.
Hi Tails.
Wan come wif me?
Play games?
Chonch you? (don't you?)
Wan go swimmin' at G's?
Oh, I will hep you! (she then walked to the screen and tried to grab him by the hand and pull him out of the screen)
Jump on tramponmean, Songick? (trampoline)
Wes go!
Wan go a G's house?
B's house?
Ridea motorcycle?
Yes!
Yes Songick!
Put some shoes on?
Fank you! I welcome!
Wes go, Songick!
Ready Set GO!
Do counting Songick?
1-2-3-4-5-6-7-8-9-10
I FOUND YOU, SONGICK!

And so on. It is cracking us up. She's been at it for at least a half hour, and she is still going steady, playing with Wallpaper Sonic. She pretends a lot, especially with objects that aren't necessarily typical playmates. She plays with her babies and animals, of course, but she also befriends chairs and tables and puzzle pieces among other less popular playmates. "Come on Chair, wes go. Wes go playin, Chair. COME ON CHAIR!" Or with her shape puzzle pieces, "Oh my bueful family, SHAPES! Sooo cute shapes! Wes go." It is quite endearing. BubTar never went through this stage, so I don't know if it is unique to her in the way that it is "different" or just different from BubTar (as so many things are), but regardless, we love watching her while she is doing it. Any inanimate object is a possible playmate. She is just so into it. In fact, she caught me watching her and Sonic and she walked over and said, "Turn 'round? You face. Wook at computah!" LOL. Evidently she and Sonic were sharing a private moment and didn't want a spectator.

Contemplating the adventures she and Weaf might have together.

Okay, without further ado, the song for today.

Fall is here, hear the yell
Back to school, ring the bell
Brand new shoes, walking blues
Climb the fence, books and pens
I can tell that we're going to be friends
I can tell that we're going to be friends

Walk with me, Susie Lee
Through the park and by the tree
We will rest upon the ground
And look at all the bugs we found
Safely walk to school without a sound
Safely walk to school without a sound

Here we are, no one else
We walked to school all by ourselves
There's dirt on our uniforms
From chasing all the ants and worms
We clean up and now it's time to learn
We clean up and now it's time to learn

Numbers, letters, learn to spell
Nouns and books and show and tell
At playtime we will throw the ball
Back to class, through the hall
Teacher marks our height against the wall
Teacher marks our height against the wall

We don't notice any time pass
We don't notice anything
We sit side by side in every class
Teacher thinks that I sound funny
But she likes the way you sing

Tonight I'll dream while I'm in bed
When silly thoughts go through my head
About the bugs and alphabet
And when I wake tomorrow I'll bet
That you and I will walk together again
I can tell that we're going to be friends
I can tell that we're going to be friends
- We're Going to Be Friends, The White Stripes


Saturday, November 24, 2007

Feed my brain

I am in need of book recommendations. I'm on a serious Jodi Picoult kick right now and the library has run out of novels for my consumption. My wallet has run out of excess cash with which to purchase more. And so I turn to you, Wise Internets, for a delightful list of alternative novels to fill my brain with literary goodness.

I enjoy Picoult's novels because of the rich emotional lives of her characters and the complexity of the situations they find themselves in. I love that the stories are not one sided, rather you jump from character to character and fully understand the situation they find themselves in. I love that she can take a tragic situation and weave it into something beautiful every time, even if it is not always what you might consider a happy ending. Being emotionally drawn into a story is key for me.

My problem is this, I read the same type of novel by the same author until I am forced to try something new or the phase ends. Usually I run out of novels first, but in cases like my high school Mary Higgins Clark phase, my interest waned before I got to the end of her endless list of novels. Currently, I am not at the end of Picoult's novels, but until Christmas rolls around and I get a BN gift card or two, I don't really have access to any more. Which is why I come to you, lovely readers of all that is good, I need suggestions that my brain might accept as a substitute.

I've tried Hornby. I recently read Long Way Down and finished it, but it didn't really draw me in. I read it because it was available and I felt the need to read. It was good, but not really what I was looking for. I loved the Time Traveler's Wife very much. I'm currently reading this book, but it doesn't count as reading because it is for informational purposes. In fact, I sort of doubt I'll get through it without an novel to alternate it with and reward myself.

So tell me, what are you reading? What should I be reading? What is your favorite novel? Help me feed my poor little brain!

You know, like KayTar feeds Blue Baby, except with books instead of cookies.

Thursday, November 22, 2007

Thankful for...

my little Tars, and my ManTar. And you all, of course. I don't know quite where I would be without all of your support. You all amaze me every day. There are millions of other things I am thankful for; faith, food, shelter, family, health, happiness and so on for a very long time. Oh, and Canadian chocolate, too. Can't let that one go unnamed. Too important. ;)

Today I took photos for the Christmas card, since they both looked so spiffy. The montage is the results, good and not so good. :) It was created largely for grandparental enjoyment, so don't feel compelled to watch it all the way through. There are A LOT of photos. You have been warned.



If you'll notice, they are both wearing the same sweaters from last year's photo.

Christmas card photo 2006

Possibility for Christmas card photo 2007.


Evidently growing is for chumps.

Also, the photos I took today are no longer current, because BubTar lost his last front tooth between this photo shoot and bed tonight. He can really and truly sing "All I want for Christmas is my two front teeth". Except, he has lost all FOUR of them.

We had a delightful day, KayTar enjoyed LOADS of mashed potatoes and turkey. This was really the first holiday of any sort she has truly enjoyed. Usually she is overwhelmed and upset, clingy and sad. Today was pure joy for her, she was never ready to leave when it was time to go. They both had much fun playing with their cousins, and we had a nice time with family. It was a very good day.

I hope you all enjoyed a very happy Thanksgiving, too.

Wednesday, November 21, 2007

Elucidation

Do you ever experience that feeling post-blog-posting that you didn't quite get out what you had intended to?

I'm experiencing that. ;) It isn't that the comments were not beautiful and thoughtful and glorious, because they were. I just came away from it thinking, perhaps I didn't completely get across what I was thinking. So, instead of deleting and re-writing, I'm just clarifying a bit.

We've been on this path long enough to know that whatever little labels are acquired along the way don't change anything. The labels are just adjectives that describe things we've noticed all along and that help other people understand her situation. They are quite handy and there are millions of times I wished we had a few more so I didn't have to go on and on and on about things until I'm blue in the face. If she were to be diagnosed with this hyperlexia, (which is a HUGE if, although the symptom list is like reading an exact description of her language skills) it would be an excellent tool. It would give the teachers and therapists and doctors working with her a bit more insight without me having to spend 30 minutes trying to describe her language quirks or have them looking at me like I'm crazy when I mention she is reading. In fact, when I came across the information I thought my heart would pop right out of my chest, it was beating so rapidly. When you are so in the dark, like we are with KayTar, any little ray of light it feels like electricity flowing through your body. Knowledge is power and this would just be additional knowledge. But regardless of the information, she will always be who she is...the information is just a tool to facilitate our understanding who she is and how she experiences the world.

The sadness comes in, and it is a rather small sadness at that, when we began to realize that the single, solitary area that we thought to be untouched by all of this hoopla might not actually be untouched by it. In fact, it might be caused by it. It was a touch of sadness that the one area of freedom from it that she had, might not actually be free. To be honest, she is improving so much in so many areas we have been harboring the hope that one day she might grow out of all of this. And I think that Josh and I both kind of took the reading as a sign that maybe underneath the layers of challenges, there she was, a typical child almost ready to emerge...not only typical, but a wee bit brilliant. But now, you see, instead of the brilliance being an exception to the challenges, it is possibly the result of one. Still brilliant, do doubt about that. The way we thought about it just had to shift the tiniest bit. Regardless, there is no doubt she will always be our unique, wonderful little KayTar in all her brilliant quirky goodness no matter how many new adjectives we pick up along the way. The sadness is not really sadness at all, it is just a shift in perception and the realization that her differences really do permeate all of who she is...and that is okay, because it all works together to make her this little child we love so dearly. Today at lunch, I was telling Julie that the more time that passes, the more I doubt that we will ever get that one nicely wrapped diagnosis. I think it is more likely that things will be parceled out, one at a time, to varying explanations. Perhaps her brain had to reroute itself due to the lesions and the fallout is slightly altered processing, resulting in sensory processing disorder, a language disorder, neurological episodes, and so forth and so on. Maybe there is not one big answer out there for us. But as long as we can continue to gain understanding of how she experiences the world and can meet her needs, maybe we don't need anything more than that.

And DUDE. Did you read about hyperlexia? Did you read this post? It is the SAME. It blows my mind. I've never read anything that so accurately describes how she acquires and uses language. It was like they wrote it based solely on her. Really, really weird. I read about it in several different places and it is just sounds so much like her. It does seem to be tied to ASD in lots of areas, but sometimes is considered to be separate. While we've always felt KayTar exhibits some ASD qualities, especially in regards to language, she doesn't fit the ASD picture because of how very social and interactive she is, among various other things. I'll be intrigued to hear what our pediatrician says about it all. Once we restart therapies, I'll discuss it with her speech therapist as well. We will see if anything comes of it.

For us, this will never be less awesome. One day it might just become HYPERawesome. ;)



PS: Joy (my anonymous friend) thanks a ton, I really mean that. That was the first time I've ever heard of it and the information has been really quite illuminating. I am VERY glad you left the comment. Like I said, my previous post just didn't quite say what I meant for it to say. I hope this one cleared it up just a bit.

Tuesday, November 20, 2007

KayTar and the Great American Novel

Okay, not really, but I am taking a break from the bleakness of healthcare to brag a bit on the wee one. Bragging touches a nerve at times, so let me preface this by saying I know it is totally NOT normal at this age AND I am pretty certain it is tied to her unique little pattern of brain functioning. I've posted about this a couple of times before (all those links have videos of her doing her thing), but it has kind of reached a new level. Her reading vocabulary, which is now not only site words, has to be over 200 words. I know it sounds like an exaggeration, but our jaws drop DAILY from her reading something new. Her ability to retain these things is NOTHING we've cultured in her or worked with her on. When you say "My two year old is reading." the standard reply is "Well, we don't QUIZ OUR CHILD ON ACADEMICS." Well, neither do we. She just KNOWS this stuff. It is 100% her. We encourage it only because it is something she enjoys so much.

She's gone from words like stop, go, mom, dad, cat, dog, to words like work boots, library, bring, planet, adventure and so on. I wish I could remember some of the real jaw droppers, they are the ones that leave Josh and I slack-jawed in awe staring at each other. Words that I truly cannot place where she might have learned them in context. I really need to start writing them down, because she truly shocks us every day. She reads billboards out the car window. She lays down with me in the evenings when I read my novels and points to words and reads them to me. She reads words from the episode summaries that come up on the DVR menu. She lays with me looking at her own books, pointing out words and often sentences. She still doesn't understand the "rules". She doesn't consistently read left to right or top to bottom, but she is reading the words on the page. Not 100% of them, for sure, but a huge number. She attempts to sound new words out, too. When she learned library she said, "Yi. Buh. Rah. Eee." She says "Yi" because she can't articulate the L sound. I've heard her trying to sound out lots of words recently. It just so impressive. This is where she shines. She might not be able to jump or run or walk up stairs or hear with both ears or eat table foods consistently, but reading? That she understands. It blows my mind.

This video I took 5 minutes ago. I opened BubTar's riddle book from the library to a page we have NEVER read with KayTar and asked her to read it. This is the FIRST time I asked her to read it, I didn't even do a practice run before turning on the camera. I promise.



It might not be reading the Great American Novel, but maybe by Kinder, right? ;)

Monday, November 19, 2007

3...2...1....KABOOM!

I've spent my day on the phone with various insurance providers, searching for a solution to this problem. I spoke with several companies and provides before finally calling the High Risk Pool. This is the information I received.

There are three different plans, two that fit our budget perfectly.

They cover medical expenses and have reasonable co-pays, even for specialist visits.

They cover therapeutic needs, even past age 3.

They cover her on going hearing tests, although not her hearing aids. No big deal, we only got $500 from our current insurance to help with her aid. We can handle paying the full amount out of pocket when it comes time again.

I explained that she has no official diagnosis and asked about eligibility.

She said that if KayTar was either denied coverage previously or was accepted, with the exclusion of some of her needs she is eligible.

I have an email from the agency we used to apply for insurances stating that they cannot cover her therapeutic needs. I would just have to get that on their letterhead and we are in.

But then...

She asked, "Are you or your husband employed? Does his employer offer group coverage?"

Yes. He is. They do. And it sucks and costs your YEARLY DEDUCTIBLE every MONTH.

I asked, "If his group coverage does not cover some of her needs, can we still qualify?"

She put me on hold for a few minutes and came back with a voice filled with apologies. Any group coverage, ANY group coverage. Expensive, awful, worthless, ANY. Any group insurance is a deal breaker.

And so we have one less option. The one option that we thought might work the best.

It shouldn't be this hard.

Little foodie

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

A typical day that used to look like this:

1 Yogurt

Now looks like this (yesterday, for example):

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

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

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



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

Sunday, November 18, 2007

Soooo...

You know that feeling when there are are a fistful of posts dangling from the tree of your mind, but none of them is quite ripe yet? I have loads of ideas, but none of them are bubbling forth in the form of words. I never craft my posts. I don't work on them in advance or draft them and add to them. I just sit down and out they spill onto the screen, because it is just time for them to be born into the world. All that is to say, today I'm a bit stuck, and because it is NaBloPoMo I am playing through the pain.

I could talk about what I've learned about myself during this vacation or about the HUGE verbal progress KayTar has made recently. I could talk about how we are trying to wean BubTar off the constant habit of dissolving into tears over inconsequential (usually video game-related) things or about how in the last two weeks, KayTar has suddenly realized she is TWO and has been missing out on the whole "TERRIBLE" part and is wholeheartedly seeking to rectify that. I could talk about how I am being forced to eat more healthfully by my restricted diet and have been medically motivated to get a bit more exercise or about how this vacation from the medical world has been perfectly timed for all of us. I could talk about how KayTar was eating a single container of yogurt per day last week and this week finds her eating toast, nuggets, baby food, yogurt, Cheez-its, and more. Or about how KayTar is reading, reading, reading. Words, sentences, and more. Words she has no real business reading at age two, but still she does it. She read to me from my Jodi Picoult book yesterday. I could talk for ages about that. But I won't, because I can't seem to get it all to congeal into words yet. But there I will say this little break has been beautiful for us all.

But in lieu of all that actual content, I give you my personality test results, courtesy of my father. He works in the oil business as a safety guy. He has a big seminar or conference with Chevron coming up and they sent him out a fancy personality profiler test because they are using the results to arrange seating properly for the conference/seminar/whatever. Cool concept, I think. So this is what it says about me.

****

The Socializing Relater, The Helper

I am a low key, inclusive person who makes others feel comfortable and wanted. I fit into one of the two most naturally supportive styles. I am a natural conversationalist who both listens and expresses myself with ease. I seek positive relationships and enjoy being involved with different kinds of people in different situations. However, there are times when I enjoy being on my own, having time to think about why people are doing what they are doing.

I have a tendency to build esteem in others and I am always looking for opportunities to seek harmony both at home and at work. I sometimes lack assertiveness with others and play down my own personal needs.

I have an inherent sense of fun and enjoy seeing people happy. I do not like confrontation, arguments, or conflict.

My tendencies include:
* I empathize and project concern for others
* I become overly subjective about people I care about
* I am dependable, caring and responsible
* I listen to people's feelings and don't mind sharing my own
* I will show confidence and trust in people
* I prefer people oriented, positive work environments
* I like to hug and kiss those I love

My Potential Limiters:

With tasks: I would benefit by learning when and how to take charge of a situation. I sometimes find myself procrastinating, waiting for others to provide direction. To be highly competitive, I need some coaching on assertiveness.

With people: Because I have strong people needs and a desire to please others, I can become exhausted by striving to meet their demands. I must learn how to say no. I also have difficulty dealing with conflict, because when people express displeasure or disagreement, I tend to interpret it as personal rejection.

* I should become more assertive about my personal needs
* I need to learn conflict resolution and negotiation skills
* I need training or coaching on how to set priorities, manage resources and monitor tasks
* I should find a method to satisfy my need to know how people really feel about me

****

I think it pegged me pretty well, actually. I wish that it was an online test, because then I could find out how many of you fine folks would be seated next to me at this hypothetical conference. I'll settle for knowing how many of think you'd fall into the same profile, though. These things always pique my interest.

Be back tomorrow...with a bit more to say, I hope!

Finally starting to look like fall here!

Saturday, November 17, 2007

A Song for Saturday instead

all around me are familiar faces
worn out places
worn out faces
bright and early for the daily races
going no where
going no where
their tears are filling up their glasses
no expression
no expression
hide my head i wanna drown my sorrow
no tomorrow
no tomorrow
and i find i kind of funny
i find it kind of sad
the dreams in which i'm dying are the best i've ever had
i find it hard to tell you
i find it hard to take
when people run in circles its a very very
mad world
mad world
children waiting for the day they feel good
happy birthday
happy birthday
and i feel the way that every child should
sit and listen
sit and listen
went to school and i was very nervous
no one knew me
no one knew me
hello teacher tell me what's my lesson
look right through me
look right through me
and i find i kind of funny
i find it kind of sad
the dreams in which i'm dying are the best i've ever had
i find it hard to tell you
i find it hard to take
when people run in circles its a very very
mad world
mad world
enlarging your world
mad world
- Mad World, Gary Jules (cover of Tears for Fears)



Because sometimes it is, isn't it?

Friday, November 16, 2007

For Janet

So this one time, I met Jean Chr├ętien, too. See?



We were on our way out to lunch in this photo. He wanted to take me somewhere fancy, but I said, "No Jean! No need for all of that. The nearest candy store will be fine. I would like an appetizer of Coffee Crisp, an entree of KitKat Chunky, and a platter of Smarties for dessert." And he happily obliged. Such fond memories I have of that day. Sigh.


ETA: NEWS FLASH! Evidently it was Paul Martin and HE LIED TO ME. He totally said he was Jean. And I'm just a little ole American with candy colored stars in her eyes, how was I supposed to know it wasn't really Jean?! The candy luncheon was still delightful, so I'll forgive him just this once.


I've had this photo in my photobucket account (minus the text) for over two years! One of my Canadian friends photoshopped it and sent it to me, but now I cannot remember the context of WHY she photoshopped me into a photo with a former PM. I do remember it being hilarious at the time. When I saw the photo of Janet's hubby with him, I suddenly remembered I had this little gem tucked away. What better time for it than NaBloPoMo, the day after I go all nuclear about healthcare?

Thursday, November 15, 2007

Healthcare is a Bitch

I went to doctor on Tuesday. No, not the gynecologist. I know, I know. Must do that. But those oh-so-joyous plans were preempted by a more pressing need. At the start of my last cycle, I took some Advil for my always-wicked cramps. I found that it gave me a pretty painful stomachache, even if I took half the adult dosing, so I stopped taking them and the pain receded. This month, at the start of my cycle, I took one solitary Excedrin before bed. Just one. And I woke up at 5am with a belly full of fire. I woke up and ate a muffin and it seemed to soothe it, but an hour later it was killing me again. I ate crackers. It soothed it. 20 minutes later it was killing me again. This went on for several days, although I had only taken one solitary Excedrin. It was clearly no longer an upset stomach irritated by a medication.

I had the suspicion that it might be the start of an ulcer, based on the type of pain, the frequency of it, and the location. It felt like strong hunger pangs, although I was not hungry, coupled with burning. So, I made an appointment. I do not have health insurance. In making this appointment, all sorts of things ran through my head. Diagnostic tests, lab fees, medication costs. It could be pricey. I went to google for information and found this.

Here is a sampling of the provided examples:

Sore throat, office visit:
Your throat hurts, you go to the doctor. Price includes visit with physician and Strep test. Test was negative. $109

Tubes in ears
Your child has had chronic ear infections. The decision is made to insert tubes his ears. Price includes office visit 30 days before procedure and 30 days after, day surgery charges, antibiotics, drops and decongestants. $2,719

Chest X-ray
You go to the clinic with a bad cough. Your physician thinks it may be pneumonia and orders a set of X-rays to help make the diagnosis. Price includes clinic visit, X-ray and reading of the results. $183

GI Endoscopy
Conducted by a specialist. Scope exam of the gastro-intestinal track on an outpatient basis. Includes conducting the test and reading the results. $1,398

Broken arm
Your child jumped off the swing set. Price includes ER visit, X-ray, simple cast. $2,523

KayTar has insurance, BubTar and the rest of us do not. Do I understand the risks? Yes, I believe I do. Do I like having to take those risks? No, I do not. You see, the insurance Josh's employer provides is extremely expensive. We pay between $800-$1000 per month for his company provided insurance, plus the co-pays are ridiculously high, therefore not helpful for everyday needs. We do not have that sort of money available to pay out monthly. No matter how tightly we adjusted our budget, which is very tight to begin with, we could not squeeze that much money out on a monthly basis. And so, when we found out what was happening with KayTar, we squeezed out that extra money to get her on an excellent plan. It is expensive for an individual plan, but the benefits are amazing. Her plan ends in February. They said that the co-pays were too high and they haven't seen enough interest in their plan, which basically means they are canceling it because they are not getting THEIR money's worth out of the "product".

Now we are faced with multiple issues. KayTar's perfect insurance is ended, so we must find her a workable plan. This in itself is no easy task. Every plan I have checked into does not cover her therapy needs, at all. There is no coverage for developmental-based therapy after the age of three, unless you qualify for something called "High Risk Pool" insurance. I'll come back to this later.

Her insurance started in August 2006 and will end in February 2008. HIPAA's protection of pre-existing conditions is effective only if you have been insured for 18 months prior to your current enrollment. February will put us right at 18 months, but I do not know if her enrollment DATES matter in this case. I am not sure that it will truly be a full 18 months, based on start and end dates and that makes me very nervous. If her pre-existing conditions are not covered, that means anything related to hearing loss, gastrointestinal problems, neurological problems, genetic problems, feeding issues...basically anything we have fought through for the previous year WILL NOT BE COVERED. Tell me, if none of that is covered, WHY DO WE NEED INSURANCE? We will be paying them for absolutely no reason, because they will not be paying out in any of the areas she has need of. Does that make sense to you?

Part of the reason we've fought so hard for a diagnosis recently, is because we know this window is closing; we know that if her pre-existing conditions are excluded we are sunk; we know that "High Risk Pool" might be the only way we can go. Here is the kicker, "High Risk Pool" only covers certain diagnosis from what I understand. What about kids like KayTar, who are medically needed, who need good solid coverage, but they aren't one of the "lucky" kids who have a label to attach to their symptoms? If KayTar, had diagnoses seizures, then we would be in! But bizzare neurological episodes accompanied by EEG abnormalities, brain lesions, developmental delays, feeding issues, and hearing loss? Try again. And it is also astronomically expensive. Basically once they are in the high risk pool, normal insurance will never cover them again, even if they "outgrow" their issues. They are a health risk, and insurance companies can't really make money off of those kids.

Did you know that our state provides an SCHIP program through the very company that KayTar currently has insurance through? With identical benefits? Did you know that we are eligible for this program if you use our net income, but if you go by our gross income we are just over the line? Just over the line! We don't even receive any of that money! Do you know where it goes? Taxes. We are paying the government to provide services like this for people in need and the TINY bit of money that we give is what keeps us from not being eligible for the programs ourselves. How can that be right?

The bill President Bush recently vetoed would have provided insurance for my kids. Not some faceless huddled masses. These kids. MY kids.



He can ask for $200 million to go towards the war, but we cannot spare $35 million for our children's healthcare. How is that right?

We are responsible parents, trying to make the best decisions in a situation that is not ideal for a number of reasons. Would things be different if KayTar's level of need wasn't so high? Yes, it likely would. But that isn't OUR reality. A lot of things would be very different in an ideal world, but that isn't where we live. We live here, mired in these challenges and I can't understand how our government can continue to hemorrhage money into this war and refuse to put a fraction of it to help children in need. It isn't even about socialized medicine, which I suppose is the big Republican fear. It is about the very real problem created by a healthcare system that is more geared to making profit margins grow, rather than actually provide affordable, worthwhile care. People suffer in that sort of system. People who don't have enough money to be a worthwhile investment for these companies to cover. People who need the coverage too much are denied. "Sorry, you will use this insurance too often. We only provide for people who will pay us ridiculous sums of money to provide peace of mind. We really try not to pay out in the event of actual medical needs." It is not a good system. It is not a HEALTHY system. Sure, there are people who function within it just fine, people with enough money and low enough levels of needs...but what about the people who fall outside those parameters? What do they do? What do WE do?

I went to the doctor on Tuesday. My doctor knows I do not have insurance, so rather than send me for diagnostic tests and lab work to confirm the ulcer suspicion, he called it gastritis and gave me a months worth of medication to help an ulcer heal. He also told me to come back after the month if I am still experiencing pain and we will go ahead with testing. The visit cost me $40. The medications were free. There are good and helpful doctors out there. Doctors that will help as much as they can when they know you are in one of these situations, but the system shouldn't be so broken that they are necessary. If our kids were eligible for SCHIP, Josh and I could take the money we put towards KayTar's insurance and get ourselves on an individual plan. Everyone would be covered. We could afford it. We could live with it. But unfortunately that is not the case, and it might never be. So we have to find a solution right now, in this system, and I don't know that it will be possible.

Wednesday, November 14, 2007

Wordless Wednesday: Pieces of You









More Wordless Wednesdays here.

Tuesday, November 13, 2007

A favor, please?

My friend Katie who suddenly lost her mother last week is heading to the hospital this morning with her son. Jake is 8 years old and he weighs roughly the same as KayTar. He gets his feedings through a j-tube, but it hasn't been working well. He has lost 6 pounds in the last month. He needs surgery on his j-tube site, but because he is now nutritionally compromised, they cannot operate. They will be putting in a PICC line today at 1pm, to attempt to get him nutritionally stable and build him back up enough for the surgery he is in need of. Yesterday, his nurses at the care facility had to start him on oxygen because the whites of his eyes were going gray and his oxygen levels were falling between 63-83. Katie was in the hospital with Jake at this time last year, too, and it was so very difficult for all of them. I can't imagine having just lost my mother and having to face what lies ahead of them now. They know for sure he will not be out before Thanksgiving, but they don't know exactly how long it will be. Jakie has 5 siblings who just lost their grandmother and now have their brother heading to the hospital for an extended stay, please keep them all in your thoughts and prayers.

Katie is strong, but no one should have to bear the weight of all of this. If you would, please, leave her a few kind words today. When we were in the hospital, and all of you stopped by from jen's it was such an incredible comfort. In that moment, I felt much less alone. I wish that I could be there with Katie today, but since I cannot, I'd love it if we could all stand beside her in spirit. And please, send all the spare thoughts and prayers you can gather in her direction. She needs to be lifted up today, because the weight she is under is truly too much to bear. No one should lose a parent and wake up the next day in mortal fear for her child. It is just too much.

Katie's blog
Jake's CaringBridge


Katie and Jakie on Mother's Day.

Monday, November 12, 2007

A pair of friends

Yesterday was Josh's birthday. I know, such a bad bloggy wife am I...no birthday post for him. :( He is a quarter century now and VERY excited that he no longer has to pay the underage tax on car rentals. Oooooh!

Saturday we went out to dinner with our best friends, who happen to be married. L and I have been friends since junior high, prior to meeting Josh actually. We were both in NJHS together and band, but she was a flute and I was trombone, so we didn't really hit it off until we were in PE together and mutually avoided the whole physical part of physical education. We mostly talked about my Internet boyfriend (now Internet husband), which is totally exciting for a couple of eighth graders, as you might imagine. Josh and J have been friends since our sophomore year. We fixed them up on accident really. L was spending the day with me, J was spending the day with him, and we wanted to see each other. I remember apologizing to L, because it wasn't a set up and I felt kind of bad about forcing her to spend the day with us on a pseudo-double date. I was CERTAIN they wouldn't hit it off, and we surely were not gunning for that. But we decided to see a movie, Vampires, I believe. When we got to the rather old theater, we chose a row and walked down it. Josh stopped and sat, I stopped and sat, L stopped and sat, and then there was a seat missing. J made a big deal and said, "Fine. Don't sit by me." And walk around to sit by Josh. He was half joking and half making a big deal, I think. Then we went out to grab some Taco Bell. Oh the culinary instincts of 15 year olds! At the restaurant, if you can call it that, I sat on one side of the table next to Josh, and L sat across from me. Then J said, "If you won't sit next to me in the movies, I'm not sitting next to you now." and pulled his chair to our side of the table. It was clear this was not meant to be. And then, he showed up at her house one night that week and asked her to ice cream...and so it began. Unlikely romance, though it was.

And so we have the perfect set of couple friends, because they were born out of already solid friendships. It is really the best kind of merger. Josh has friends that are just his, I have friends that are just mine...but J and L are special because they are ours really. We enjoy them together and separately and it is lovely to see them. We were in their wedding. We've "camped" together. We see each other fairly often. We have long lists of both individual and couple memories that we've shared with them. It is always a good time.

So Saturday was no exception, we had dinner, our crew plus the two of them, then came back to our house and left the boys to play video games and put the kids to bed while we scooted off for coffee. We talked about her job, and KayTar, and BubTar, and politics, and fertility, and the school system, and the gynecologist, and the decline of American youth, and our families...we talked about everything, really. And then came back home to the boys, who were still playing video games and shouting things to each other periodically. L looked at me and said, "Can you imagine having relationships that are this superficial? Think about everything we just discussed, and here they are still perfectly content shooting and shouting at each other. Boys." I said, "I know. Did you know that when we were in the hospital, I asked Josh 'Did you tell J?' And he said 'Why would I do that?' Like it was a foreign concept." L said, "I know, remember when J's dad had cancer and he didn't think to mention it?" And yet, it works for them.

As they were leaving, I said, "Let me know when you have an open Saturday and I'll leave the kids with Josh and we'll go out." She said, "That sounds great! I can even drop J off here for the day!" Like a daycare of sorts...and I thought, really, that concept is really quite fitting for these man-children of ours. I don't think they ever quite outgrow that need to play and compete. Some men do so with sports, some with video games, some in other ways, I'm sure...but I think they all hold on to the school yard spirit of childhood. Truth be told, I kind of love that about them.

On their wedding day/

Sunday, November 11, 2007

A Second Song for Sunday

And for KayTar.

Our song, for no other reason than she loves for me to sing it to her and with her. I have at least a hundred memories of her, content in my arms with this as the soundtrack. Healthy memories, ill memories, daytime memories, nighttime memories, home memories, hospital memories...a rainbow of memories with her, me, and our song playing in the background.

Hey there Delilah
What's it like in New York City?
I'm a thousand miles away
But girl tonight you look so pretty
Yes you do
Times Square can't shine as bright as you
I swear it's true

Hey there Delilah
Don't you worry about the distance
I'm right there if you get lonely
Give this song another listen
Close your eyes
Listen to my voice it's my disguise
I'm by your side

Oh it's what you do to me
Oh it's what you do to me
Oh it's what you do to me
Oh it's what you do to me
What you do to me

Hey there Delilah
I know times are getting hard
But just believe me girl
Someday I'll pay the bills with this guitar
We'll have it good
We'll have the life we knew we would
My word is good

Hey there Delilah
I've got so much left to say
If every simple song I wrote to you
Would take your breath away
I'd write it all
Even more in love with me you'd fall
We'd have it all

Oh it's what you do to me
[Hey There Delilah lyrics on http://www.metrolyrics.com]

Oh it's what you do to me
Oh it's what you do to me
Oh it's what you do to me

A thousand miles seems pretty far
But they've got planes and trains and cars
I'd walk to you if I had no other way
Our friends would all make fun of us
and we'll just laugh along because we know
That none of them have felt this way
Delilah I can promise you
That by the time we get through
The world will never ever be the same
And you're to blame

Hey there Delilah
You be good and don't you miss me
Two more years and you'll be done with school
And I'll be making history like I do
You know it's all because of you
We can do whatever we want to
Hey there Delilah here's to you
This ones for you

Oh it's what you do to me
Oh it's what you do to me
Oh it's what you do to me
Oh it's what you do to me
What you do to me.



Saturday, November 10, 2007

When Kyla gets sad...

She DOES things.

Busying things. Distracting things.

Things like cleaning KayTar's room, getting the pieces of KayTar's big bed out of the attic, cleaning them all, and then building her big girl bed, rearranging her room, and doing many loads of laundry.

Then Kyla feels very tired and has much less energy and focus for being sad.

I think it is call avoidance.

So that is what I did on Thursday. I know it seems counterintuitive to do the crib to bed switch when KayTar is so anxious, but that was actually our catalyst. We were all set to do it after Christmas, but she had physically NEEDED someone to drift to sleep every night this week and we reasoned that it only made sense to put her in a bed big enough for cuddles. And it has worked, MAN, has it ever worked.

The first night I laid with her from 9-10, Josh took 10-11, and I took the last shift of 11-11:20ish when she konked out. Yesterday, however, she went down for nap only getting out of bed three times. She didn't even need me to lay with her, she just went to sleep. She's been boycotting nap all week, so that was huge. Last night, she got out of bed only once before putting herself to sleep. She's slept through the night both nights as well.







Her bed was my bed as a kiddo, it is an antique.






Last night, she and I laid in her bed and read our own books for at least 45 minutes. She just laid next to me and read her book! She wasn't being goofy or trying to get my attention, we were just two people reading books together. In fact, if I would turn my head to look at her, she would nudge it back and say "Do reeenin! Books!" Of course, every couple minutes she would also say, "I wuuuv reeenin." or "I likes book!" But otherwise, it was all peace and quiet.

We're still not past all the doctoring anxiety, but I imagine that will take some time. Last night while reading, at one point, she scooted over against me and said, "Docdah. Go docdah. No waaaaaan to, MomMom." We have those moments every day, usually when we are getting in the car or getting ready for the day, but sometimes it comes quietly out of nowhere...the overflow of her fears tumbling out in to a hushed whisper. In those moments, I just hold her tight and wish all her fears away...and then life just goes on.

Thursday, November 08, 2007

Now with more angst!

We almost had it.

I knew she didn't fit the presentation. I knew it. But I let myself entertain the idea, a little too often, a little too long. But they said a pill could make her better. Just a pill. It is so simple, who can resist latching on to that kind of hope?

This post makes me feel sick. The joy and enthusiasm. The hope. I let it get away from me, this strict control I keep on those things. The reins just slipped away and I floated into the sky on a great big gust of hope. It is a long way to fall when you are so high up and you find that hope has disappeared.

Yesterday, I spent the day falling. I cried, a lot. I cried every time I thought about it. Or thought of having to tell someone. Or thought of thinking of it. Quietly, though. I hate tears. I hate people seeing my tears. I hate days where no matter what I do, they just keep spilling from my eyes. Yesterday was that kind of day for me.

It is ridiculous, though. I really didn't lose anything. I lost the idea of something. I lost the hope that there really might be an answer out there. And here I am, with an anxiety-ridden two year old who won't get dressed in the morning because of where she thinks we might be headed. We can't look anymore. We can't go traipsing through her body to attempt to find the hidden secrets, the keys to this mystery. She deserves a life outside of that. I never thought we would get to a point where we would be satisfied with a non-answer, because not knowing is so hard. You can't plan or expect or even be sure things are okay without an answer. But right now, in this moment, trying to get an answer feels worse than the alternative.

Our window has started to close. She is done and I won't force her past that. No appointments until January. Our insurance ends in February. I have no diagnosis to aid in making sure that she gets the type of coverage she needs. I was waiting to restart the search until after we had this answer. An answer could have provided aid. When we switch insurances, I don't know how much of her needs will be covered. I don't know what it will cost to see her specialists or have a lab run or have her hearing tested or see her therapists. I don't know what we will be able to afford for her in that way. I feel like everywhere I look, the world it covered in thick gray fog and it just KayTar and I huddled here in the tiniest of clearings. How do you choose a path in that sort of fog?

We canceled therapies this week, too. The decision was made for me, mostly. Our Tuesday therapist flaked on us, yesterday KayTar refused to put clothes on and I didn't feel it was worth the struggle, today I am canceling, tomorrow her therapist is out of town. Three week vacation, it is. It means I have three weeks before I have to tell her therapists we're back at square one. My tears will have dried by then, I think.

Wednesday, November 07, 2007

I got nothing.

Yeah. Nothing. Nada. Zip. Zilch.

40! DAYS!

It is actually quite nice except for the whole mind game portion.

I was kind of bluffing about the whole 40 day doctor thing, because "There's NO WAY I'll make it 40 days! I took pregnancy tests and posted them on the Internet! That is akin to the doing a ritualistic Period Dance." And yet. Hello, Day 40. Damn.

Josh has two theories.

1. His sleeping self and my sleeping self had unprotected sex, unbeknownst to our conscious selves. Doubtful. And kind of creepy, right? But it also sounds like a great way to multi-task.

2. I am currently on my period and "JUST DON'T KNOW IT, BECAUSE IT IS REALLY LIGHT."
I said, "Light like INVISIBLE?!" and he said, "Sure. Light like invisible." And I said, "Yeah, maybe I'm on my invisible period ALL THE TIME and I just don't know it!" And he said, "Don't ask me. It is YOUR invisible period. What do I know about it?"

Yeah, he's a funny guy.

****

Last night I rocked KayTar to sleep. I rocked my almost three year old to sleep. The last time I rocked her to sleep (when she wasn't being sedated for something) was when she was about this age:

About 6 months old


Just for comparison's sake, here is a repeat of yesterday's photo:

32 months old


That is to say, it has been quite a while. I've tried during various rough nights, but she always just wants to talk and play with me. Rocking does not settle her into sleep. She doesn't crave it.

Last night, we tucked her in, and this girl who puts herself to sleep nightly cried out. The same cry as last night. Josh went in and tried to Stern Daddy bit, it didn't fly. I went in, scooped her up, and sang a bit to her per her request. Then I went to set her back into the crib like last night and she panicked. I wasn't even out the door. I was still touching her, in fact, and she couldn't calm down. So I picked her up again and swayed around the room with her in my arms. She wrapped her arm so tightly round my neck that it was almost uncomfortable. When it would slip, she would wake, panicked, thinking I had gone. We did this until my arms felt like they would give out. We might have to keep a close eye on her weight, but a toddler is a toddler and they are a bit heavy. So I said, "Baby, can I take you to the rocking chair?" "A rock. A chair. Yes, MomMom." So I did.

She wrapped herself so tightly around me. She put her arms between my arms and my body. She slid her feet behind me in the chair. She nestled her head so it was pinned between my chin and chest. And she settled and slept. But every time her body relaxed, she would jerk awake and grab for part of me, my shirt, my nose, my hand. She had to have part of me in her hand, then she'd slip back to sleep. I rocked her for a while, waiting for it to stop, waiting for her to be in a deep sleep, but it never came. She started to feel cramped in that too small rocking chair and needed her own body space to sleep properly...but she didn't want to let me go. I kept rocking until it became clear she'd never get into a deep sleep without space to move and we went back to the crib. She freaked out and Josh was finally able to soothe her to sleep. Finally.

I got her test results this morning, while writing this actually. They came back normal. I don't know what it means. But we can't do this. They are going to want to do more tests and we just can't do that to her right now. She can't even sleep. The poor baby can't even fall asleep at night.

Last night when Josh and I fell into bed, he said, "Do you think we waited too long? Do you think it was too much and we should have put a stop to it sooner? Do you think it did damage?"

And I said, "I hope not, babe."

I really hope not.