Tuesday, December 30, 2008

2008: Whew, glad THAT is over.

I did this last year, too, and it was convenient to read through the entire year in a couple of minutes. I had high hopes for 2008, (NO HOSPITALIZATIONS!) but that didn't quite work out. 2009 can do what it wants, I'm not tempting fate this time around, thankyouverymuch. 2008 was wild; loss of insurance, surgeries, hospitalization, being on television and in a magazine and the newspapers, giving speeches...absolutely none of it was expected when the clock struck midnight on January 1st, not to mention the usual schedule of illnesses, tests, and doctors. It was good and bad and in between, but we survived it. KayTar has developed in leaps and bounds all year, her former self nearly unrecognizable to us now. This was the year she left her babyhood behind...everything but the diapers, that is.

January:

BubTar started the year vomiting.
She had an episode in the airport on New Year's Day.
I got searched at the airport, and BubTar spiked a fever.
The first week of 2008 is terrible, BubTar and KayTar both are sick before it is over.
KayTar wouldn't drink. Two weeks in and we're on the dehydration teeter-totter.
I went back to school.
She puked in her new bed, a KayTar christening! I talked about possibly weaning her from the bottle. Silly me.
I worried about things, the district transition and weaning from the bottle.
KayTar stopped eating.
We increased her Pediasure and decided to stop fighting with her to JUST EAT PLEASE!
The not eating thing? It really, really ate at me.
The pediatrician brought up the feeding tube for the first time. I was totally freaking out. (I should have just said, "YES PLEASE! FEEDING TUBE!" Hindsight is 20/20.)
She kind of related an experience to me.
She had her first district evaluation!




February:

BubTar though speech therapy involved a stage and a podium.
KayTar lack of empathy created some sibling issues.
I investigated KayTar's level of comprehension. (all of these verbal development posts are so fascinating to me in retrospect, I've forgotten what a rough ride it was for her to acquire her speech skills!)
We found a compounding pharmacy! I fell in love! (If you have a kid with sensory issues or oral defensiveness, FIND ONE!)
We discovered that she was probably uninsurable.
We lost another option for insurance.
She turned THREE!
We almost made it through February without illness, but KayTar picked up a souvenir from her well-check.



March:
She saw genetics, neurology, ophthalmology, and the pediatrician before losing her insurance.
She had part one of her autism evaluation. She is weird!
She went 73 days without an episode and then had one during part two of her autism evaluation.
We celebrated a full year of walking!
She was, as she always is, content even though she couldn't run and play like the others.
BubTar spent his first weekend away from home.



April:
We missed her feeding clinic appointment because she was uninsured.
She ate some baby food and I was thrilled.
She had trouble understanding other people's emotions.
BubTar had a double ear infection! Poor guy!
I got the unofficial report on KayTar's district evaluation.
BubTar turned SIX!
She had an episode. On BubTar's birthday, no less.
I gave a speech at our state Capitol.
I was in the newspapers!



May:
We had the official meeting about KayTar's district evaluation.
BubTar captured a video of KayTar's eyes doing that weird thing.
KayTar got her glasses!
We were able to get KayTar plugged into some great programs.
Josh and I had our seventh wedding anniversary.
KayTar gave up the Pediasure (temporarily).
We had her ARD meeting.
KayTar went through a rough patch behaviorally and it was hard to handle.
I wrote about blogging, about the Just Posts, and about what it all meant to me. I love this post.
BubTar graduated from Kindergarten!
I got a phone call from SELF Magazine...they were going to fly us to NYC!



June:
We prepared for our trip to NYC.
The flight went well.
The photo shoot went well.
We found out the kids would be insured soon!
I wrote a round up post of our trip to NYC.
KayTar loved her arts camp this summer and told me all about it!
Her first recital was adorable.
KayTar judged me for wearing track pants in public. This still makes me laugh.
I wrote about KayTar's developmental progress. She really hit her stride this summer in many ways.
I used to be friends with ghosts. I love this post, too. If you haven't read it, you should.



July:

KayTar really impressed me with her word games. It was a leap in both understanding and communication.
KayTar hadn't had an episode in 75 days and I didn't know what to do with myself. Literally.
I got stuck in Atlanta on my way to make a speech in Washington DC. This still pains me!
I relished in the new found level of communication I had with KayTar, my once unknowable girl.
KayTar impressed me with her art skills.
BubTar got stitches! His first ER visit ever!
I made myself read that post that still turns my stomach, the one about the ALMOST diagnosis. I made peace with it and realized that the diagnosis doesn't matter in the end, the only thing that matters is that she is thriving. And she is.
She had an episode after 95 DAYS without one!
She had a weird residual pseudo-episode.
KayTar was sick and I showed off my handwriting.
She had her third episode in 5 days. It was sad and exhausting. We went to the hospital shortly after this post.



August:
We came home from the hospital on my birthday. I turned 25!
The long version of our trip to the hospital.
She never looks sick, not even when she is in the hospital. (except for last week, evidently)
KayTar sang a solo at her camp recital.
A cup of coffee at a diner made me realize I was a grown up.
KayTar and her sick seat, through the years.
I wrote about how similar BubTar and I can be.
Our magazine article came out!
An updated rundown of KayTar's various KayTarosities. (I need to do a new one now that she's tubed and profoundly deaf in one ear.)
BubTar got sick right after school started, thanks to our GENIUS trip to the Children's Museum on the last day of summer. This post cracks me up.
It was my two year blogiversary, and I looked back at my very first post.
KayTar missed her first two days of school because she was sick. We had the Tube Talk with the feeding specialist and subsequently our pediatrician. It was effective, as we were playing Dehydration Roulette once again.
She finally started school!
I talked more about the possibility of a feeding tube. (I was so cute and worried and I just want to shake myself and shout JUST DO IT! IT WILL BE THE BEST DECISION YOU EVER MAKE!)



September:
KayTar needed blood work done to check her kidneys after prolonged dehydration and she had an episode.
We found out her hearing loss was progressing.
BubTar got sick and I lamented KayTar's poor intake.
KayTar got sick.
Hurricane Ike! Big fun!
We came home after 13 days of being with my parents.
KayTar had a repeated hearing test.
I met with the surgeon about KayTar's g-button. I was still agonizing over it. (Oh Kyla, love, it will be wonderful. Just you wait.)
KayTar said princesses don't have glasses or hearing aids. I think they do and should, at least occasionally.



October:
Croup.
We had a BIG appointment with the ENT.
KayTar learned how to win an argument. Whatever.
We added a muscle biopsy to the surgical schedule at the request of the Internets.
I wrote a letter to Joe the Plumber. I'm glad we won't be hearing anymore about him.
I had a TV crew in my living room.
KayTar got her first report card.
I posted a picture of KayTar's pre-button belly.



November:
I started NabloPoMo. KayTar was in pre-op quarantine.
I wrote a post to KayTar's bottle. I love this post. A lot.
We prepped for the hospital.
KayTar had surgery! Obama won!
She smiled her first post-op smile.
She had her first tube feed.
We came home from the hospital!
She drew the saddest self-portrait ever.
KayTar introduced you to her tube.
I fed her in her sleep! MIRACULOUS!
Want to know about feeding disorders? Read this post.
KayTar pukes a lot, if you didn't know.
Josh and I were sleeping in separate beds. (as we are again)
I showed you my work space and KayTar had a MRSA infection at her biopsy site.
I dreamed of having a baby.



December:
We find out the kids are likely going to lose their insurance. Again.
KayTar's stoma site starts growing some granulation tissue, also known as The Dude.
It snowed!
Good things happened.
KayTar had a crazy allergic reaction.
KayTar couldn't breathe. I have never been more scared.
She was very, very sick.
She got into the peanut butter (which we thought she was allergic to) and didn't react. HOORAY!
Her MRSA infection came back.



Fun facts:

She only had 7 episodes this year! Can you believe it? She had 13 in 2007, so this was a vast improvement.

She now weighs 32 pounds, thanks to her g-button!

19 comments:

angiesarman said...

What a year Kyla! I am so happy that Kaytar is up to 32 pounds, she is about to catch up to John John, our non-eater, LOL. I am sure 2009 will be a great year for you guys, I just know it. Have a great New Year! :)

AJsMom said...

Hey if it makes you feel any better, my 4 1/3 year old is finally up to 31 pounds! You guys have had quite a year...

Lisa b said...

Damn that MRSA! here is to an even better '09.


love the post round up. I cannot believe I never looked at the video bubtar captured of Ks eyes. So I never realised Julia does the exact same thing.

runafteryou said...

very cool post Miss Kyla! Loved the year in review ;)

Christine said...

Happy New Year to you guys. 2008 sure seems like a whirlwind.

Here's hoping things are a little smoother and calmer in your neck of the woods for 2009.

YAY 32 pounds!

Corinn said...

KayTar said princesses don't have glasses or hearing aids. I think they do and should, at least occasionally.

Don't expect to see it for another YEAR or so, but would you and KayTar be willing to beta the book I'm writing? It WAS started at her request. ;-) Story so far: Princess Kiera, a little girl with glasses due to her eyes being overly light-sensitive and hearing aids so she can actually understand speech, discovers another little princess in peril and sets out to rescue her.

Wishing you all the best in 2009!

Jo said...

Isn't it funny how something we fought so hard against, that seemed so WRONG at the time, turns into a blessing, a wonder, a thing to be grateful for? Hope 09 is a better year for all of you! Thanks for the comment on my blog, I will be checking in on yours!

ewe are here said...

What a year!

And the past ten days or so, wow. Some very scary moments in there... and so sorry I couldn't get on say 'hang in there, thinking about all of you' before now.

May 2009 be a healthier, happier year for all of you.

~aj~ said...

This year certainly had its ups and downs. The last month of the past 2 years have been doozies, haven't they?! I sure hope the start of '09 is a great one for all the Tars!

P.S. That very first b/w shot of the lil Tars is perhaps my favorite photo you've ever taken. I love it!

tierd said...

Wow, you all have been through so much. Hoping 2009 is FAR BETTER and FAR EASIER for you all. You deserve some easy.

crazymumma said...

I am so honoured to have been part of this year with you.

Cori said...

2009 is going to be a GREAT year for the Tars! I feel it!

Chaotic Joy said...

This post must have taken you ten years to complete! The picture of Bub and Kay nose to nose is so sweet. I must have missed that the first time around. Happy New Year to the Tars.

Christine said...

WOW.

WOW.

what a big big year. This year will be a good one kyla, a really good one.

xoxo

flutter said...

32! rock on little KayTar!

Woman in a Window said...

Wow, that was a helluva year. Let's hope all the work's behind you and you can reap the benefits in 09. All the best!
erin
Oh, and that magazine photo is priceless!

Ben and Bennie said...

I'm just basking in the glow of 2009 just like you! I just love those pics!!!

Janet said...

Dude. What a year it was!

Your spirit is inspirational; your kids are gorgeous.

xo
j.

Magpie said...

Wonderful round-up.