Monday, December 31, 2012

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!

Saturday, December 29, 2012

Twinkle, Our Naughty Elf


He arrived on December 1st, looking innocent enough.


The morning of the 2nd, we found him hanging above the computer

He answered the kids' questions and used the webcam.


We found him hanging from the fan in a pair of boxers one morning...

He decorated with underpants...



He tried ALL of BubTar's video games one night...

He wrapped BubTar's sax and KayTar's oxygen tanks...
He had a tea party with the Lalaloopsies...

He took a bathroom break...and left something behind in the toilet. BubTar said, "I think it is edible!"

He played Pretty, Pretty Princess with some sock monkeys...


He made cookies...

KayTar did not like the mess...

He had a hot tub party...

He made an Elecare Jr. tree and decorated it...


He wrapped the table and strung up lights (and on a different night brough t the kids those trees)

He had a Silly String fight with Buzz...

Buzz lost...

He read A LOT of books one night...
He drove a shoe train around the living room...

He hid the tree and presents!

But we found them!

He read the Christmas story to some friends...

A lot of friends...



He crashed the wheelchair! And took a video of it!
video

Then he tried to look innocent!

He played with the scanner and replaced our pictures...
And on Christmas Eve, he left us poor Texans some snow!

He also stayed up late one night and watched TV and ate a BUNCH of snacks, took a nap under the tree in one of KayTar's baby cradles, and maybe something else I am forgetting. He sure was a BUSY elf! We thought he was gone and had left with Santa, but I guess they stopped back by on their way home to drop off one last surprise! Twinkle brought KayTar's new American Girl doll a sock monkey hat, brought BubTar a Gamestop gift card to get a game for his new XBOX, and brought them both some fun crazy straws and an indoor snowball fight...and he brought us a bottle of wine, perhaps to apologize for all of the messes he made! Oh, what a month it has been. I think I will need a whole year to recover!