Big 12 of 2012

1. The kids were in their first musical, Oliver! back in January/February. It was fun for all!

January: Fave Photo

2. KayTar's brain MRI showed an almost complete resolution of the earlier lesions! Of course, now that we know we are dealing with mito, we know there is a likelihood of recurrence, but still, for now...YAY!

February: Fave Photo

3. Josh surprised me with a super fun night away for our anniversary!

March: Fave Photo

4. I was interviewed for the New York Times! KayTar still thinks we should have been on the front page and that now everyone will think mitochondrial disease makes you kiss sock monkeys.

April: Fave Photo

5. Josh graduated from university!

May: Fave Photo

6. KayTar got her first wheelchair and started supplemental oxygen at night. And then started supplemental oxygen during the day (as needed).

June: Fave Photo

7. BubTar started middle school! It has been AMAZING for him! He really fits in this new environment and he is loads happier than he ever was in elementary. He has great friends and really enjoys school and participating in band.

July: Fave Photo

8. Transgenomic agreed to cover the entire cost of a $15K genetic test because KayTar's first sample was destroyed in a lab accident. MIRACLE.

August: Fave Photo

9. We went to Mito Camp! KayTar wasn't feeling her best and she crashed on us in a somewhat frightening manner, but it was probably the most amazing thing we did all year. Each of us had a really wonderful time and are very much looking forward to next year already!

September: Fave Photo

10. KayTar was tentatively diagnosed with mitochondrial disease. The official diagnosis will come after genetic confirmation, but for now we know enough that she is being treated as though she has it. As I wrote on Facebook today, "Every year for the past 6 years, I've made a silent New Year's wish that we would finally figure out what in the world was going on with KayTar that year. 2012 is the year is finally happened! While it is not the simplest sort of answer and it leaves us with many more unanswered questions, we are thankful to have it at last."

October: Fave Photo

11. We went to the North Pole!

November: Fave Photo

12. And qualifying just under the wire, we have last week's perfect storm! We haven't had to go to the ER (for anything other than urgent button swaps) since February 2010, as far as I can tell. So, that alone makes this sort of newsworthy. The other thing is, this is the first time her ketotic hypoglycemia has acted up since the onset of her gastroparesis and motility problems which greatly complicates things. I am hoping this is not the start of a new trend!

December: Fave Photo

There are a few months that I had a VERY difficult time choosing my favorite photo, so enjoy these runners-up, too!

From December

From November

From October

From September

From August

From May

From March

From February

From January

I hope that each and every one of you have a safe and fun New Year's Eve and a monumentally blessed 2013!

Attack of the Lalaloopsy!

One day while KayTar was doing her homework, she mentioned that BubTar was creeped out by her Lalaloopsy dolls. We decided to give him a little scare and KayTar told me to put her in his bed, on his pillow, face up, body turned backwards. It.was.AWESOME! 

The first time was so fun that it turned into a little game and I started leaving it places to surprise him!

Keeping his shirt warm...

Practicing his sax...

He left her for me one night while I was showering...

One of my favorites!

Ready for school...

This one was THE BEST! He actually yelped.
He was looking around his room for her and
didn't look at the ladder until he was on it. AGH!

Hiding in his sock drawer...

Waiting for him to pack his lunch...

In the car, waiting for him one morning...

On his reading throne, enjoy Calvin and Hobbes...

One weekend, I let him help me hide her for KayTar, too!

Waiting in her wheelie...

Hanging out on the IV pole...

Hiding in her lamp...

The doll has been on hiatus for a couple of weeks now, because I think we were all getting a little too used to it...but I predict she will show up again soon! :)

First Day of School!

Today was the first day of school for the kiddos! (I started yesterday.) Everyone was SUPER excited about their big day. KayTar was FINALLY going to have her own desk at school and BubTar was starting MIDDLE SCHOOL. Big, important stuff. KayTar had a rough night last night (and by extension so did I!); her oxygen sats were wonky, I had to jump out of the shower and go check her persistently alarming pulse oximeter (only a loose power cord, thankfully), and in the 5 hours I was asleep I had to tend to her 7 times or so for various reasons (monitor alarm/excitement/need a drink/too hot/alarm/is it morning?/stuffy nose). BubTar said he had trouble sleeping, too, because of his nervous excitement. In spite of the rough night last night, everyone woke up ready to face the day (except me, until my coffee kicked in)! Aren't they just the CUTEST?!

Second and Fifth Graders!

BubTar went inside KayTar's school with me and it was so nice for him. He got to see all of his favorite faculty members and get hugs and well wishes for his first day of middle school. KayTar was thrilled to go in and find her DESK! She has been waiting for a desk since Pre-K. Her teacher was just a tiny bit nervous about how the day would go, so I reminded her that I didn't have classes today and she could call or email for anything, big or small...but luckily, the day was total smooth sailing! After dropping KayTar off, we went to BubTar's new school and he walked himself in all on his own! I can't believe how big he is getting. MIDDLE SCHOOL!

After school, KayTar told me her day was "epic" and her desk was her favorite part, and second to that was EVERYTHING about second grade. On the way to get BubTar, the nurse emailed me that KayTar's Orajel was in the clinic (she has a nasty mouth ulcer right now), so we took a u-turn and headed back to her school, then back to his (roughly 15 minutes from campus to campus). It was a little nerve-wracking, but now I know how much time I have to spare between pick-ups! We got there in plenty of time and had to sit in the ridiculously long line for a while still. He was all smiles when I picked him up! That is a rarity! He had a great day, they didn't switch classes, but his homeroom teacher and classmates were nice. He told me about an upcoming school dance (dance!) and the rock wall in the gym. He said most of his classmates are GT kids, too. On the way home, I rolled KayTar's fingers up in the car door (ack!), but she survived. We ALL survived the first day! Then I came home and did mountains of back to school paperwork. Oy. (one of the forms was for permission for s-e-x ed class! school dances and s-e-x ed! AGH!) Aside from a few little blips, the school year is off to a great start!

Summer so far...

Since summer started on June 8th (one month ago):

We watched The Muppets outside in the park with friends.

Josh and BubTar had a week of Twilight Camp for scouts, while KayTar and I had girls' nights for a week!

BubTar had 3 weeks of GT camp where he learned about and made different types of art.

We had 2 game nights with friends.

Josh and I went out to play Bingo at a bar with friends (and Josh got a Bingo!).

The boys spent 3 days camping at the scout ranch.

KayTar and I went ice skating with friends.

KayTar and I had friends over for movie night to watch The Princess Bride.

We all went bowling with friends and BubTar was such a good sport (not his usual reaction to bowling).

Josh and I went out to Kemah to eat, watch fireworks, and ride rides with our best friends for the 4th.

We went to a minor league baseball game with friends. After the game we heard a symphony concert and watched fireworks. It was KayTar's first baseball game, her first time on a carousel, and her first time being up past midnight for fun reasons. She was SO excited about the fireworks and gasped/exclaimed something after every one of them. She also shouted "OH MY GOSH, THIS IS THE BEST NIGHT OF MY LIFE! WOOOOHOOOOOOO!"

And there has been a lot of swimming, of course!

I'd say we are having a pretty awesome summer so far! :)