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.

Tuesday, November 06, 2007

I have a theory

After reading all of your lovely comments yesterday, I believe that the Lab is not only withholding KayTar's test results, but they might also have my dear Aunt Flo in lockdown. Hopefully, they will release them BOTH to my custody very, very soon. I should mention that never in my life has stressed affected my period. And I've been a fair bit more stressed than I am currently feeling, or at least more stressed than I am CONSCIOUSLY feeling. I suppose that subconsciously there could be more going on that I actually am privy to. If I get to day 40, that is TOMORROW, then I'll make an appointment. The first appointment I've had since birthing KayTar. I know, I know. Naughty, naughty Kyla...not having her regular, joy-filled, lady-time appointments. But I put off my appointment post-KayTar and by the time it was time for a yearly my life had exploded into all manner of OTHER appointments and the thought of making time for myself to have my feet up in stirrups became even more unappealing. I can think of a nice long list of places I'd rather be. That being said, if we get to tomorrow, I'll make my appointment like a good girl.

****

Yesterday was awful. KayTar knew where we were going from the moment she woke up. Mommy doesn't wake her unless we have Somewhere to Be. And sadly, the only place we have to be that early is the hospital. She was withdrawn all morning and once we got in the car and onto the freeway she started crying quietly and saying, "No docdahs. Don't want to MomMom. No docdahs." I told her we had to see the doctors today and that she would be okay. "You okay, KayTar. You okay." she repeated with tears in her throat. I almost flipped a u-turn on the freeway. It was just too sad. I let her pick some music (Maroon5 Wake Up Call, if you'd like to know what she's into these days) and tried to help her forget where we were going. It worked for a while. But one we exited the freeway she knew where we were and it started all over again. I felt every Mommy instinct in my body raise themselves in protection, but I had to keep driving. I made myself a promise, though, after yesterday, we are done for a while. No appointments. No doctors. No nurses. Unless someone gets sick, of course. She deserves a childhood that isn't so filled with poking and prodding. She deserves a vacation from it, if we can't quite manage a life that is free from it. I told myself that we would get it all done, and then be done. And so I kept driving.

The ABR went well actually. We had a different nurse, Martha, bless her soul. The first time KayTar wretched up the sedation meds, she said, "We have suppositories, do you think that would work?" "OH MY GOD YES! THAT IS THE ONLY WAY WE CAN GET MEDICINE INTO HER! WHY HAS NO ONE EVER TOLD ME ABOUT THESE BEFORE? I LOVE YOU MARTHA! MARRY ME! MARRY ME!!"

And so Martha got us three green sleep-inducing suppositories and they went right up the poop-chute while KayTar practiced counting them. She immediately curled up on my chest and was wholly content. It still took about an hour for her to fall into a deep enough sleep that I could lay her down, but it was a dream compared to the previous nightmares. Suppositories are my best friend! Martha is my hero! YAY FOR BOTTOM ROCKETS!

It went well. KayTar's left ear is largely unchanged, although she had a slight worsening in one of the frequencies and a slight improvement in the opposite frequency, neither is a large enough change to make a difference. They ran the test that helps predict if an ear is about to fail and her right ear still passed, so that is good. The audiologist said it is important to keep checking though, because there isn't a time limit on when it could fail. It was an interesting experience to watch them check her left ear. It practically flat lined. It made me sad to see that basically, that ear really has has flat-lined. I knew already, of course, but seeing it visually was a bit different. We left with an appointment to be seen in 6 months instead of 3. Thank God for little breaks.

Then we went to the 4th floor for her KUB. The receptionist printed our stickers and sent us to the 8th floor. We checked in on the 8th floor and the receptionist wanted to see our order from the doctor, which was still on the 4th floor. So after some floor jumping, we got it sorted out. Somewhere between floors, KayTar had diarrhea through her pants. I took her to the bathroom to discover I had already used her last diaper during the ABR. So I went back to the receptionist and asked if by chance they had any diapers handy. She said they would give me one in the x-ray lab. So we waited a minute or two and were called back. KayTar's tush was saved by the kind radiologists and their stockpile of Pampers. Because I had to answer the question, "Could you be pregnant?" honestly, I had to wait in the hall while they did her x-rays. I heard her ask for me twice, but the techs did SUCH a wonderful job with her. They had her count and say cheese and kept her mind off the noisy giant camera. She didn't even cry! Big girl.

After the KUB was done, we ran to the cafeteria to grab a quick lunch. KayTar has milk and Cheetos. I had a Chik-fil-a sandwich and a diet DP. After swallowing my food whole for the most part, I called the pediatrician's office to let them know we were headed in for her flu shot. I know everyone has an opinion about the flu shot, but with KayTar's propensity for getting really ill from minor things, we're not going to play roulette with this one. We got there, signed in, and waited maybe 5 minutes before being called back. We saw the doctor in the hallway and said hello. The nurse gave KayTar her shot and she didn't even get out a whole yelp before it was over. She got a shiny star bandage and we were on our way. The shot was actually the easiest part of our day.

We left the house at 6:45 and got home after 2pm. And we were oh-so-tired. Of course KayTar couldn't nap because she had been sedated all morning, but she petered out about 4:45 in her chair.







Josh (who I (perhaps unfairly) don't usually think of especially emotionally astute although he is incredibly caring) came in the door and said, "She needs a break. She can't keep going like this. She's going to hate the doctors again. Every time she goes she is being poked and prodded. We have to figure something out." and I said, "You know, that is exactly what I had decided on our way out this morning." So we talked about it and after this week, she is going to have a two week vacation from EVERYTHING. No therapy. No doctors (unless she is sick). No tests. Nothing. After the two weeks, we will reinstate therapy, because we can't let those go for too long, but we are still going to try not to have any doctor's appointments for at least a month, if we could make it to the new year without any, that would be a dream. She deserves a normal childhood, even if we can only manage it for two weeks every once in a while. That in itself makes me a little sad. I shouldn't have to block off time for her to be a child. She's been having episodes for over half her life. We've been in this diagnosing hamster wheel for over a year now and we just have to take a step back, even if two weeks is all we can manage. She's only two and a large percentage of her experiences and memories are caught up in doctors and nurses and tests and needles and trips to the hospital and IVs and electrodes and hospital bracelets. Sometimes it just doesn't seem all that fair for her. We can all tell it is weighing on her right now.

Last night at bedtime, she was crying in her crib. Not a "I don't want to go to sleep!" cry, but a sad cry. I went in to check on her and she said, "Carry you, MomMom?" and so I picked her up. She put her head on my shoulder and touched my mouth with her palm and said, "Singing, MomMom?" and I said, "What would you like me to sing, sweetie?" and she said "Whoooa, what you doooo meee.." and I said, "Okay, baby." and sang through Hey There Delilah for her. When I was done, she patted me and said sleepily, "Good singing, MomMom." and I said, "Sleep time now, sweetie. See you in the morning." and she rolled over and curled up in her Gee. As sweet as those moments are, when she's feeling emotionally secure, she doesn't ask for them. I know that when she needs those extra cuddles or a song in Mommy's arms at the end of the day, it means that it is all getting a little too scary and she needs me to chase it all away for her. And so I will.

Supergirl has limits, too.


***

ETA: My dear friend Katie lost her mother suddenly last night. Won't you please, please stop by and leave her some comforting words? I know nothing can heal her pain, but it is nice to know people are thinking of you when your heart hurts so very much.

Monday, November 05, 2007

TMI for NaBloPoMo

This is what I did this morning.



And what I did on Friday.



No, we are not trying to get pregnant.

No, we did not have a breech of the front lines this month or anything of that sort.

I am just on DAY 38 of a roughly 28-30 day cycle. I am regular except for a handful of times in my entire life, even then it was only a day or two. The absolute latest I ever have been was 37 days and that was my second cycle after KayTar because my body was still, ahem, getting its groove back. I've never missed a period unless I was pregnant, and I've never been pregnant and unable to get a result from a home test. In fact, I wasn't even late yet with KayTar when I found out.

And so I come to you, wise Internets, to tell me where the hell my period went without notifying me first? Because, DUDE, it is tripping me OUT.

****

And keep sweet KayTar in your thoughts and prayers today. We have the dreaded ABR this morning and she is showing HIGH LEVELS of doctor-phobia. On Friday when the nutritionist came to weigh and measure here, she went batshit crazy when it was time to lay down. It took the nutritionist, Josh, and me to hold her down. She's never so much as whimpered during this before. I'm a bit nervous about how today will go for her when she is already agitated. She's supposed to have GI x-rays, but I might hold off because I don't want to leave her alone in there and I don't know what to say when the technician says "Could you be pregnant?" BIG FUN! Just think of the KayTar today if you get a spare second. I hate that she is feeling so fearful right now. I'm fighting the VERY STRONG URGE not to call and cancel, because I want nothing more than to give her a reprieve. However, unfortunately, anything later than today will put us past the deadline for the Great School District/Insurance Switch of 2008. So the Brain demands I keep the appointment, even though the Heart is throwing a bit of an internal tantrum about it all.

Because she's like a million times nicer to look at than a negative pee stick. ;)

Sunday, November 04, 2007

A song for Sunday

Let it all out
get it all out
rip it out remove it
don't be alarmed
when the wound begins to bleed

cause we're so scared to find out
what this life's all about
so scared we're going to lose it
not knowing all along
that's exactly what we need

and today I will trust you with confidence
of a man who's never known defeat
but tomorrow, upon hearing what I did
I will stare at you in disbelief
oh, inconsistent me
crying out for consistency

and you said I know that this will hurt
but if I don't break your heart then things will just get worse
If the burden seems too much to bear
Remember
the end will justify the pain it took to get us there

and I'll let it be known
at times I have shown
signs of all my weakness
but somewhere in me
there is strength

and you promise me
that you believe
in time I will defeat this
cause somewhere in me
there is strength

and today I will trust you with the confidence
of a man who's never known defeat
and I'll try my best to just forget
that that man isn't me

reach out to me
make my heart brand new
every beat will be for you
for you

and I know you know
you touched my life
when you touched my heavy heart and made it light

-Relient K, "Let It All Out"



Yesterday I heard this song while driving and it made me think so clearly of a particular blog friend that I had to post it. It is a song by a Christian (crossover) band, but I think the sentiment is applicable to anyone experiencing the universal pain of healing. The courage and fear, the strength and weaknesses, the hope and suffering. I love that the subject of the song is such a difficult and dark process, while the melody is peace and beauty. We all need a little beautiful peace in our darkest moments.

Saturday, November 03, 2007

WARNING: BubTar bragging ahead!

BubTar has just been knocking my socks of recently and I about to burst if I don't do a bit of bragging.

He is in kinder this year, if we were in Canada it would be senior kindergarten, in case you all were wondering. He is a five year old, an April baby, so he is one of the younger kids in his class, although not the youngest.

At his school, they learn to write in cursive in Kinder. Well, he started it last year in PreK, but it was not for "mastery" only for exposure. In the last two weeks, the handwriting sheets he has brought home are just blowing me away!


 

 
He writes so neatly for being a kindergartener! Heck, he writes better than Josh does as an adult. ;) I'm just so impressed with the work he is bringing home. He recently had his first quarter tests, and he made 100's in every area, except for number writing, his 3 got away from him and he ended up with an 80 (only 5 numbers, so 20 points a piece, EEK!). Still completely impressive, though.

They have not yet started reading groups, that will begin later this month, but yesterday at the library, he selected the following books (because he likes camping and he likes books and bugs):




The first was chosen off the first grade Accelerated Reader shelves. It includes words like "specimen" and "science" and "studied", and he is reading it to me with very little assistance. I have to help him sound out a word per page, maybe. The second book is a touch easier and he takes it in the car to read, because he can do it without any help for the most part. If he does need help, he can just spell out a word for me so I can help him sound it out that way. They are both level two readers, for kids in 1st-3rd grades. He is in kinder! And they haven't started reading in class yet. He's really doing amazingly with it. The last book was his choice for a science-related book. He's been choosing a I Spy book each time we go to the library, but this time I suggested trying something new, like science? And he was excited and shocked. "They have SCIENCE BOOKS HERE?!" Science experiments are the highlight of his school week, so taking home a science book sounded like heaven. He didn't know how to choose. So I named a bunch of different science related subject areas and he chose insects. We pulled 4 or 5 books off the shelves for him to peruse and he finally decided on this one for a starter. Next trip, he's already got his eye on another. He was reading this one out loud to me on the way home from the library. His favorite new fact is that Moving Leaves sometimes take a bite out of each other because they look so much like real leaves!

Although he is all boy, in the way that he can be out of hand just like the rest of them, he is really doing so well in school. At our parent/teacher conference, his teacher said that his only difficulty in the classroom is staying on task or focusing properly. She said that although he struggles with this, it is not affecting his school work or his ability to retain the information that is given in class. I wonder if some of that is genetic. I cannot sit still during a lecture to save my life. My knees bounce, my hands fidget, I write song lyrics in my notebooks...but at the same time I am retaining every bit of what I'm hearing. If I were to force myself to sit still, I wouldn't hear a word of what was being covered because I would be too focused on making myself be still. Like Josh as a school ager he can be a bit of a troublemaker, but nothing serious most of the time. We are both so proud of the big kid he is becoming.


The scholar, in truest form.

Friday, November 02, 2007

Getting there

Since Josh is on vacation this week, I took the opportunity to run the remainder of KayTar's district paperwork to the intake school yesterday. I love public school offices, the scent, the sounds, the paintings and inspirational posters on the walls. I attended school in this district from kindergarten through eighth grade, but this is my first experience as a parent. BubTar is in private school, a decision we made long before having children. I never thought we would be involved with the public school system. We like the smallness of his private school and the challenging nature of the academics, and we also like that it teaches Christian curriculum, because we are, in case you didn't know, Christians. But there I was yesterday, standing in my past and looking towards my future in that office.

I don't usually discuss my extended family on my blog, because they don't know about my blog and I feel it is a breech of their privacies to talk about them without their knowledge, but I am making one tiny exception. My mother is strongly opposed to our putting KayTar into the district for assistance. She believes KayTar doesn't need the help and will catch up on her own by Kindergarten. She feels that they will label her and no teacher will ever give her a chance to succeed on her own again. She will be dismissed as soon as the teachers see her file. That is really just scratching the surface of her feelings on the issue, but I won't go any deeper. I've tried explaining that not helping KayTar now, before she gets into school, is setting her up for future failures in the classroom. That if we don't help close her gaps now, she will be at a disadvantage when she starts Kindergarten. But she still disagrees, public school is the enemy. It is not to be trusted.

I've been very apprehensive about this entire process. I've heard from so many people that I have to be prepared to fight for services. That districts are stingy with services and it will be difficult to get KayTar the help she needs. That the district is the enemy until proven otherwise. And every experience I have had interacting with the district has been in opposition to these views. I'm not wholly letting my guard down, but each meeting had been reassuring and helpful. I don't feel like I am in a battle, I feel like I am part of a team. They have explained the process, taken time to listen to KayTar's developmental and medical needs, to ask questions, to show me around, to help me make sure my ducks are in a row. Everyone I have had the pleasure of meeting has been caring and warm, truly interested in KayTar and her needs.

Yesterday, the woman who was helping me with paperwork asked me to give her another quick review of KayTar. I got to the speech issues and said, "Since getting her hearing aid, her speech has really taken off. But a big portion of it is mimicry and repeating things she's heard before in such a way that---" And the woman interrupted me, "It makes it seem like she speaks normally and understands more than she really does?" It was such a pleasant surprise to have my sentence finished, I said, "Yes, that is it exactly." Later in our conversation she said, "I don't think I formally introduced myself. I am the speech language pathologist." And then it made sense. But I felt so good about the fact that this woman would be the one evaluating KayTar's speech, someone who understood the nuances of her backwards means of language development. Someone who won't be fooled by KayTar's fancy-pants mimicking.

I brought home a pretty hefty questionnaire yesterday and filled it out. KayTar looks really difficult on paper, you know.

Therapies:
Ocupational
Speech
Physical
Developmental

Delays:
Physical
Speech
Self-care
Feeding

Under medical care for:

Neurological episodes
Developmental delays
Unilateral hearing loss
Brain lesions
Eye deviations
Drop attacks
Feeding disorder
Light sensitivity
Chronic constipation

Main concerns:
Speech/Physical development
Medical Issues
Sensory/Feeding aversions

Goals:
To be conversational and have a good understanding of language
To be able to function in a classroom
To have appropriate peer interactions

And so on for 8 pages.

But in person, she isn't really that person. Well, she is, obviously, but what I mean is, so much of that just is not evident. The episodes still happen as they will, but on a normal day, there is not hint of them. Her delays are becoming less and less obvious, though still there. Her physical delays are probably most striking, because she can't run and jump and climb like other kids her age. She has trouble walking on grass (although she is beginning to do better!) and on inclines. She falls more than other kids, too. She wears a hearing aid. Her lesions are internal, of course. The eye deviations happen fairly often. It has been months since the drop attacks happened last. Her feeding issues are a non-issue unless we're sitting down to eat with someone. The light sensitivity can be very obvious when she's in the throes of it, but recently, we have had good days. The constipation is largely controlled with medication. Looking at her, you don't see the laundry list of issues, but they are there nonetheless. And filling out the paperwork is always a trip. I think she'll end up with a 5 day, self-contained classroom placement, just because of her propensity to have a medical need during school hours. I don't think they'll put her in the combination classroom because the ratio is higher and they are less prepared to deal with the situation if something does occur. We will see, though.

Yesterday I was able to see the testing classroom. It was delightful. The walls were covered in familiar characters and preschool-friendly decor. The centers were filled with toys that KayTar would go nuts for. I saw many, many familiar toys from both our home and the therapy center. It looked perfect, like KayTar would be excited to come play and do well in the "testing" atmosphere. All in all, I left feeling even better than I previously had. Each encounter just assuages my fears just a bit more. I know that there is still a possibility I will need to put up a fight to get her services, but more and more, I feel like we are just joining a new team that will be just as beneficial as our ECI therapy team has been. I'm excited to see what a classroom experience will do for her. I'm starting to believe that this could be a very, very good thing for our little KayTar.

KayTar contemplates donut.

Thursday, November 01, 2007

If you don't... I'll lock you in Davy Jones' locker!



The power went to his head. All night we heard various refrains of "If you don't [insert action here] I'll lock you in Davy Jones' locker!"

For example:
If you don't stop at this stoplight, I'll lock you in Davy Jones' locker.

If you don't stop singing, I'll lock you in Davy Jones' locker.

If you kiss Mommy again, I'll lock you in Davy Jones' locker.

He doesn't look power hungry, but don't let it fool you. ;)


****


KayTar on the other hand, was fairly clueless about everything except her costume. She has found her True Love in the form of a pirate dress. She had a big day yesterday, with double doctor appointment and only caught a 30 minute nap on the way home from downtown. She zonked out in the car on the way home from the festival and she slept through me putting on her pajama bottoms, but as soon as I started taking off the dress, she startled awake. "Pirate dress up! Pirate dress up! No sweep clothes!" So we compromised on letting her cuddle the dress to sleep in her crib. This morning she woke in a panic because she couldn't find it. I have a feeling Pirate KayTar will be a frequent visitor at our home. But she's so cute, we'll let her stay as long as she likes.

"Ck or Treat, 'curvy dogs!"
Yeah, sometimes I do take advantage of the whole parroting thing. ;)


****

The appointments well. The doctor thing is starting to wear on her again, though. Monday we had an in town playdate and all the way down the main street, she kept saying "Bye doctors! Bye town! BYE! BYE!" I kept telling her we were just there for fun this time. When we got to the hospital yesterday, she started saying, "Don't want to." repeatedly in a tiny, sad voice. The ophtho said her eyeballs look fine, so she basically turfed us back to neuro. Always nice to have a wasted appointment. At the pediatrician's, we found that she's grown half a pound in two months, so we get to hold off on another appointment until she is three. Hooray! Our lovely pediatrician also let us hold off on a flu shot, because KayTar is starting to show doctor anxiety again. We thought a nice painless appointment was in order. Monday I have to go to town (as KayTar calls it) again for her ABR and GI x-rays, so we'll swing by the pediatrician's too for a quick flu shot. Monday will do nothing to help her anxiety levels. I think the ABR is probably the most stressful test for both of us. She just handles that form of sedation so poorly. But we'll try and make it as painless as possible for her.

****

KayTar scared Josh to death yesterday. He was in her room with her and she was crying. He called me with panic in his voice, so I went to see what was wrong. His thumb was wet.

J: Look at this! What color is it?

K: Yellow?

J: Yes. She just cried YELLOW TEARS! What the--

K: Hon, they put dye in her eyes today at her appointment, it is just leftover from that.

J: Oh my God. I thought "Good God, she's crying yellow tears. Another thing is wrong?! We're gonna have to go to the hospital..."

K: Yeah, it is just leftover dye. She's fine.

J: Wow.

K: She got you good. Happy Halloween.

****

If you missed the slideshow I posted last night, check it out. It's packed to the brim with cuteness.

See?

Wednesday, October 31, 2007

My Scurvy Dogs*



*You've got to hear KayTar say that sometime. Cracks me right up.

Wordless Wednesday: Eyeless Spongebob

For Heidi.





Happy Halloween, ye scurvy dogs!

Yeah, the kids are going to be pirates. ;)


For other Wordless Wednesday entries, follow this link.

Tuesday, October 30, 2007

No news

Today was fairly uneventful. Josh is on vacation this weekend, which makes it feel like a really relaxed, prolonged weekend. We had a child-free shopping date this morning. That's when you know you are really hard up for alone time, when grocery shopping counts as your first date in months. We went to the local Buy in Bulk store and then by the regular store, too. Fun stuff. We are wild and crazy! Who needs a night on the town when you can have a pizza combo together at the bargain mart?

Bright-eyed BubTar is home sick today. Poor little man. I'm hoping he feels much better by tomorrow evening, so he doesn't miss out on the festivities. When KayTar and I came home from our playdate yesterday BubTar had started to run a fever, accompanied by a sore throat and upset tummy. He hasn't vomited, but was up feverish and crying about his stomach pains in the wee hours of our morning. He's had an EXCITING diet of dry toast, saltines, a peppermint, and ginger ale today. We've sent him to the quarantine room, which is also known as Our Bed, and he has been lounging and rotting his brain with cartoons today. I can always tell when he's sick because he doesn't ever say, "But Mooooom, I'm so boooooooored." I've been sneaking in for cuddles all day when KayTar isn't looking. He gives the best cuddles when he's not feeling so great. The tricky part is keeping he and KayTar apart. She keeps calling out, "BuuuuubTaaaaar? WhereareYOU? Noh fine YOU!" She misses him when he's not around. Tomorrow we have a day full of appointments and if BubTar isn't better, he'll have to pay a visit to the pediatrician's as well. We sure know how to do holidays up right, don't we?

I talked to the genetic counselor today. She called the lab and said that they said that results won't be in until NEXT TUESDAY. Bah! Arg! Grr! As frustrating as it is, we really have no choice but to wait. It seems torturous to have that answer dangling in front of us, but never quite being able to reach it.

Also, our little friend Ethan had bilateral cochlear implant surgery today. If you have a moment, won't you go leave him some feel better wishes? I'm so excited to see what this surgery will do for that handsome little guy!

Hang in there E-boy!

Monday, October 29, 2007

My boy






Sunday, October 28, 2007

Nightmare

I was woke to sharp cries over the monitor. I laid in bed for a moment, waiting to see if Josh might respond before heading towards her room. On the way, I thought about how strange it was to wake to cries rather than the "MomMom! Dat!" that she has come to use so often.

When I walked into her room, I heard her saying, "I sowwy KayTar. I so sowwy. MomMom? I so sowwy KayTar." And then I knew, someone had hurt her. The only time she apologizes to herself is when she has been injured.

I peered into her crib and found her wide-eyed with fear.

"MomMom. No bed. No sweeping. With me or not?"

"Baby, it is sleep time."

Her eyes widen farther, her body is rigid. "No! No sleeping! Peeease? With me or not?"

"Okay, do you want to go to Mommy's bed?" She never sleeps in Mommy's bed.

"MomMom bed. With me or not?"

I gathered her bedtime necessities and filled a bottle. When we got to my bed, she snuggled right in against my body. She propped her bottle on my chest in some strange mimicry of her nursing days. She sighed and settled, then closed her eyes.*

I am instantly reminded of the hospital. The only other time in her life that she has allowed me to sleep next to her was while we were inpatient for her EEG. She needs her own space at nighttime and truth be told, so do I. But while we were hospitalized, we were all we had of home. I wasn't just her Mommy, I was her house, her bedroom, even her crib. I was her safe place. And again last night, I was her safe place for a bit.

I laid awake, watching her, wondering what she had dreamed of that scared her so. Perhaps it was that very hospitalization. Or a scary test. Or doctors. Or nurses. Or pain. Or sunlight. Or none of those things, perhaps it was a monster completely created in her own imagination. But as I laid there and sifted through all the real-life causes for her fear, I couldn't help but pull her a little closer and whisper a prayer that soon she wouldn't have quite so much to fear.**

Yesterday at the park. She's had roughly a week's worth of beautiful sunshine-filled days and we are so very pleased.


* She didn't stay asleep in my bed for long, once she had slept the sharpest edge of fear off, she realized she was in close proximity to another person and woke. We were up for several hours. Fun times.

** Friday I spoke with the genetic counselor. Her test results aren't in yet. The counselor will be out of the office all week next week except for Tuesday, so if I don't hear Tuesday, it will be at least another week without news.

Saturday, October 27, 2007

His first progress report

Attendance:

Days present: 36

Days absent: 3

Days tardy: 0

Conduct:

Grade: A

Needs Improvement: Self control

Academics:

* Knows all letters and sounds that we've learned.

* Can read blends

* Can read one vowel words

* Can count 1-20

* Can recognize the numbers 1-15

* [Cursive] Handwriting is satisfactory

Teacher comments:

BubTar is so full of joy and an excitement for life. He is a joy to have in the classroom.


Charm, looks, smarts, and a lack of self control. Lock up your daughters. ;)

Friday, October 26, 2007

Overheard this morning...

Me: Jooooooooosh, I don't waaaaaaaant to go to therapy.

BubTar: Yeah Dad. I don't waaaaaaaant to go to school today.

Josh: Great example there, hon.

Me: (whispering under my breath) At least I'm sick. He's just copying me.

Yes indeed. 7:45 and I'm already batting a thousand. ;) Mother of the Year, here I come.

****

To redeem myself from this paltry excuse for a post, I offer you a KayTar Then and Now comparison. In the more recent shot, she is sporting what has been called by some "The look of death". Cracks me right up.

2006:




2007:



****
One more matter of business, the extremely nauseas HBM is holding a little art contest for the wee ones. I've been meaning to post KayTar's entry and have been remiss in doing so. Since today is the LAST day of the contest, I figured now is a good of time as any.

Without further ado, I present to you "Trees and Leaves"* by KayTar, with some assistance from BubTar (he was in charge of the edge painting, note the difference in their artistic stylings).



*Trees and leaves is what she kept repeating while painting, so I figured it would make a good title.

Thursday, October 25, 2007

Yesterday I learned...

How to sit still for 5 hours.

How to pull my pants down while holding a two year old.

How to pee while holding a two year old.

How to wipe while holding a two year old.

How to pull up my pants while holding a two year old.

How to sanitize my hands while holding a two year old.

How to eat one handed while holding a two year old.

How to be content while covered in a several coats of vomit with a bile topcoat.

How being 100% devoted to someone else can prevent you from feeling how sick you really are. And that it hits you like a ton of bricks as soon as the crisis is over.

How doing nothing can sometimes mean the most.

She's all better now.


I, on the other hand, am feeling quite miserable with some sort of headache/body ache/sneezing/coughing/need my inhaler-type something or other. And she woke up at 4:30 this morning. LOUDLY. Dude. Thankfully, Josh took the first shift with her, made me coffee, and then we switched off. He's a good man, that one.

I'll be around today, reading here and there when I'm not languishing on the sofa...but chances are I won't be doing much in the way of commenting. My brain is off duty, and brain-free commenting is a bad idea. ;)