Emergency Shutdown Mode.

In the miraculous absence of episodes, a new, much less seriuos phenomenon has arisen. We've coined it the Emergency Shutdown.

KayTar goes from being 100% fine to being somewhat panicked, exclaiming things like, "Give me ENERGY! I need energy NOW!" We immediately get her something to eat and or drink, and after ingesting something, she rapidly falls into a deeeeeep sleep and stays that way for several hours.

It tends to happen when we are out and about, when KayTar is walking a lot or otherwise exerting herself, though not always. This weekend, it just took a walk through the bookstore parking lot to bottom her out. This isn't just a hungry or tired thing, we see her in both those states pretty frequently. This is a near-miss episode, as close as Josh and I can figure. We think she's learned the impending feelings of doom that precede an episode and is able to fix it before it takes her out.

It is under control for now, we keep cans of Pediasure in the car at all times. We've had to pop them open for her on several panicked occasions, like once after a trip to the mall, once while out looking at Christmas lights after she had run around a parking lot with one of her buddies. This weekend at the bookstore we didn't have one on hand, so we took her to the cafe and got chips and a drink, then tube fed her some Pediasure once we were home and she was already fully zonked out. It has happened more often recently, we think she might be hitting a growth spurt.

Of course, we don't know exactly what causes it, but it seems to be another facet of the same problem that causes episodes. It reinforces the theory that all of this is metabolically triggered somehow. I have not been able to check her glucose when it happens, we are very quick to get her what she needs and the glucometer hasn't been handy since it tends to happen when we are out. Her neurologist suggested a referral to an endocrinologist for testing, so we might pursue that. Though it is well controlled now, as she grows it might be more difficult to handle without a clearer cause and plan of action in place. It is just one more small mystery in the glorious puzzle that is our darling KayTar.

The Christmas postmortem of 2009

The short version: It was wonderful!

The longer version: It was wonderful! I'm currently writing this on my new netbook from my warm and comfy bed while watching old episodes of Dawson's Creek, so that tells you what my big gift was. I also got a Garmin for the minivan...oh so suburban are we. The children are happily playing with their brand new gifts (there were many and they are in heaven) and Josh is at Academy scoping out goodies to buy with his gift card. Later today BubTar and I will go to Barnes and Noble so he can by a guinea pig care book with his $65 worth of BN gift cards and then we might be having mexican food with my parents for dinner.

Santa brought BubTar a big castle, complete with knights and a dragon. He also acquired several new science kits, books, board games, a Didj and a couple of games, a Nerd dart tag game, and the aforementioned Barnes and Noble card, among other things. He was in geeky heaven! He kept hugging me and exclaiming "Thank you!" When it was all said and done, we asked what his favorite gift was and he said, "EVERYTHING!"

KayTar received a Barbie pet vet set from Santa. She also got the Disney princess musical vanity from us, a deal I got on Black Friday for 50$ off and we couldn't resist. She got lots of girly things, board games, stuffed anmials, a baby doll, Barbies, costumes, jewelry...all kinds of magical pink stuff. Her room looks like the pink aisle at the toy store. Her birthday is in two months and I can't imagine what we'll get for her or where we will put it. The highlight of the Christmas experience with her was at Christmas Eve with Josh's family. She opened a Barbie 3 Musketeers Viveca doll and SQUEEEEEEEED and jumped up and down before saying, "Oh my, this is just a dream!" and faux-fainting onto the ottoman. My father-in-law got it on video, so I should be able to post the whole thing soon. It was so hilarious!

At the last minute, well, two days before Christmas actually, Josh went to the pet store and fell in love with a guinea pig. We had just enough left in the Christmas budget to get the guinea pig and all of the goodies for him. So we did! We kept it hidden in my closet in the bedroom for a couple of days and gave the kids strict instructions to stay out of our room...we also put up the baby gate. We wrapped a present (a ball and house log for the guinea pig) and addresses it to G.P. and after everything else was opened, we asked BubTar who it was for. He was puzzled and we suggested he look the present over really well. On the underside of the gift, there was a map to the cage of the guinea pig. BubTar followed it and TA DA! There he was. The reaction was somewhat lackluster...I mean, they are THRILLED with our new pet, but we were expecting some more of that SQUEEING and it was more like quiet amazement. Josh and I have been insanely excited since we bought him, so we expected more fireworks. GP is now named Gizmo and we are working on a P middle name so we can keep calling him GP if we want. Puccini is the front runner for the middle name currently.

As far are celebrations go, on the 23rd we had dinner with my parents and nieces and nephew and exchanged gifts between the cousins. On Christmas Eve, the Elves dropped off their traditional early Christmas gift, new jammies and a Christmas DVD. This year I was busily playing video games with BubTar when they dropped it off and Josh was at work. They must REALLY be magic! Then, we had dinner with Josh's family and opened gifts from his grandmother. Then my parent's spent the night, as they do every Christmas Eve. Santa dropped off the gifts (unwrapped and ready to go at our house, I think I heard his elves cursing in the night as it was no easy feat to put things together this year!) and we opened our gifts and my parents gifts first thing in the morning. BubTar woke up at 3am and my dad kept his busy for 2 hours until 5 when he woke the rest of us up. After we were done here, we went back to Josh's parents to open with them and Josh's siblings. We came home and rested and in the evening we had takeout from Denny's and our best friends came over to exchange gifts with us. We gave them bartending goodies and they gave us three new super fun games and between the two sets of gifts, our New Year's Eve celebraion is rapidly taking shape!

On to the cute kids...I know that is why you people really stop by here. ;)


















Hope your Christmases were just as wonderful as ours!

Our first annual Christmas letter

Dear Family and Friends,

2009 has been a very busy year for our household! Josh and I are both full time college students, he is pursuing a degree in criminal justice and I am completing my premed requirements and working on my bachelor's degree. Josh is still working in the IT department at the bank and is also BubTar’s cub scout leader. In my spare time I'm volunteering at the children's hospital and at the kids' school. When I can squeeze it in, I also do some advocacy work for children's healthcare reform. I have had the privilege of traveling to New York City, Washington DC, and our state Capitol to share our story, and we have been featured in a magazine, newspapers, and on local television. Between work, school, and the kids, we are on the go all the time it seems!

BubTar switched schools this year for second grade and although he misses his best friend quite a bit, he is doing very well at his new school! He has made straight A's all year and is being recommended for the Gifted and Talented program. He is also involved in Cub Scouts and sold over $1100 worth of popcorn this year, a goal he set for himself, more than twice as much as anyone else in his pack. He's already planning for something bigger next year! He loves to learn about science and he almost always has his nose in a book. We would go to the bookstore every day if it were up to him! He is reading at fifth grade level and is known to consume entire novels in a single sitting. He has big plans to be a writer/engineer/magician/ventriloquist when he grows up.

KayTar has had the most wonderful year! Last November she had a feeding tube placed and had her tonsils and adenoids removed, and since then we have been amazed at the improvements in her growth, development, and overall health! Last school year she had missed over 50% of her days in the first semester and this year, I can count her absences on my fingers. She has only been hospitalized once this year and her neurological episodes seem to have tapered off now that her nutrition has improved so much. She has gained 6.5 pounds and grown 4.5 inches this year. She attends school half-days in the Preschool Program for Children with Disabilities, in a classroom with both normally developing children and high-functioning, developmentally delayed children and is doing wonderfully. We just had an ARD meeting to create new goals for her because she has already achieved all of her goals for the year! Her teachers are confident that she will be mainstreamed for Kindergarten next year. She, too, is a big reader and can read nearly anything we put in front of her. She is an aspiring actress, singer, and comedienne and can be found acting, singing, and cracking jokes any day of the week. She has a magnetic personality and makes an impression everywhere we go.


We have had a very blessed year and we hope the same is true for all of you!

Merry Christmas,
The 'Tars

My Great Debater

Yesterday BubTar and I were debating the existence of aliens. I was taking the con position, and despite his recently acquired fear of aliens, he was taking the pro. His argument was simple:

Moooom! The UFO and alien books are in the NON-FICTION section of the library. NON-FICTION! Those are real!

Entirely accurate or not, I sure like the way his brain works!

Overheard at dinner....

Pertinent backstory: This here blog is a secret, meaning that the only person in either our friends or family who knows about it is Josh, who doesn't actually read it. No one else knows I blog.

Me: (telling one hilarious KayTar or BubTar story after another, while everyone at the table laughs uproariously)

My sister-in-law, between fits of laughter: Oh my God, Kyla, you should BLOG about your kids, people would LOVE it!

Me, chuckling: Yeah, TOTALLY!

The Santa Interviews

BubTar is asking EVERYONE whether they believe in Santa or not. He's scientifically minded and because the Santa-hypothesis can't actually be tested to his liking, he's having to come at it from a different angle. He's getting lots of mixed reviews, lots of adults saying, "YES! SANTA IS REAL!", some kids saying, "Santa isn't real!", and some kids saying, "Yes, he's real! Who else can sneak in my house and give me presents?" In spite of these mixed answers, BubTar still believes. Do you know why? He has what he believes to be real, incontrovertible proof in favor of St. Nick.

Do you remember when BubTar lost his first tooth? He was SO EXCITED! The next day after the Tooth Fairy absconded with his tooth, he was heartbroken, a pitiful sobbing mess. He deeply regretted selling something so precious as his very first tooth to a complete stranger...and it was gone FOREVER! It was very sad. However, you might recall that Santa Claus, being the wise and all-knowing man that he is, worked out a deal with the Tooth Fairy in which the bemourned tooth was returned to its owner on Christmas morning. This was a most impressive feat.



Recently I overheard BubTar on the telephone, asking his best friend whether or not he believed in Santa, he listened and then he said, "Well, I believe in him, because this one time...I sold my tooth to the Tooth Fairy and Santa got it back for me! He HAS to be real if he could get my tooth back!"

Score one for Santa.

WE SURVIVED!

Josh and I are done with finals!

KayTar sailed through her surgery!

WOOHOO! WOOHOO! WOOHOO!

I don't have the juice left in my brain to write anything of note, but I'll leave you with a scene from A Life with KayTar...

When they took KayTar back to surgery, in the wagon she handpicked, she called back to me, "Bye Mom! Go enjoy your coffee! I'm going to enjoy my root beer mask (they flavor the anesthesia gas in a flavor of the kiddo's choice)!"

Everyone in the pre-op area cracked up at this and when we got to recovery, the recovery nurses (who weren't present in pre-op) were all talking about it and chuckling! Our girl sure makes an impression, even when she is unconscious for the majority of something!

She insisted on wearing her scrubs and stethoscope to the hospital, everyone thought she was the CUTEST LITTLE THING, of course.

Here she is in her special surgery pjs and scrub cap. She loved it!
I leave you with her description of the surgery:

"Well, I just had my root beer mask and then when I woke up
DING! I had my new tube!"

I kind of wish that finals had been that easy. ;)

SNOW DAY!

Shorts.

BubTar brought home a girl's phone number on Monday. She is a girl from his reading group (the highest reading group in 2nd grade at his school). He said that when she was picked up from school that day, she flashed him the "Call me!" hand signal. I find this both hilarious and a little frightening.

****

Here's a little experiment: Fold your hands together, interlocking your fingers. Now look at which thumb is on top. Which is it? If your left thumb is on top, you are expressing the dominant phenotype! If your right thumb is on top, you are expressing the recessive phenotype.

Seems like such an odd thing to be genetically determined!

****

The wrapped Christmas gifts are killing KayTar this year. She's losing her sweet little mind with curiosity. She has been pleading with me for days, "Can I just open ONE? Can you give me a clue? What letter does it start with? Just tell me ONE letter! Can I just open it a LITTLE and take a peek? Let me open it! OBEY ME!!!!!" It is so hilarious, I'm going to have to try and catch it on video. This is going to be such a fun Christmas for her, she is definitely into it.

****

Sunday night BubTar approached me and said, "I'm gonna be watching you and dad on Christmas Eve...just so you know." I asked him why and he said, "Well, I think two things...either Santa is real or PARENTS are really the ones who put out the toys, because who stays awake after kids go to sleep? PARENTS." I told him, "We have to sleep, too, you know." He said, "Maybe you put out the presents AFTER we go to sleep and BEFORE you go to sleep. Or maybe Santa does it. I'M WATCHING YOU."

****

Last night was my last Chemistry lecture of the semester, tonight is my last Biology lecture of the semester...now I just have exams this week and finals next week. My Chem final happens to fall on the day of KayTar's day surgery next week (swapping of the g-button). What luck.