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!

The Big 10 of 2010

* KayTar made it to the one year mark of being episode-free.

* KayTar had not one, but TWO urgent g-button replacement surgeries.

* We ruled out adrenal insufficiency, growth hormone deficiency, and GSD 0...as well as a nut allergy!

* BubTar learned to ride a bike!

* Josh and I transferred to university.

* KayTar started MAINSTREAM Kindergarten!

* KayTar had an inpatient fast, which was horrific. Blech. We learned that she doesn't have a proper cortisol response when her glucose is low and that she has a large number of very long chain fatty acids in her blood when she is hypoglycemic which means her body isn't utilizing them properly.

* My mom discovered my blog. (Hey there, Mom!)

* Our home was burglarized. Boo.

* I passed organic chemistry, miraculously.

It was tough to choose, but I think I hit most of the major events of the year...as usual, they are mostly KayTar-related. ;)

2009, the year that rocked.

I thought about doing one of my annual wrap up posts this year, I started writing it even, but then I got sidetracked reading my first post of 2009. It was such a hopeful and happy post, full of the joy at the emergence of the child we've gotten to know so well this year. In it, I said this:

I have spent years worrying over her cognitive development. When she was still silent, I wondered if she would ever speak. When she began to speak, I wondered if it would ever be natural for her, or if she would simply parrot and label forever. When her vocabulary began to grow, I worried about her comprehension and cognition. Over the course of the past year, those worries have fallen away, one by one, and what has been left in their wake is an intelligent, well-spoken, beautiful little girl.

According to the post, last New Year's Eve, my friend L looked at me and said, "She's going to be brilliant, you know." And this year, we do know. Everyone who knows her knows. This year she IS brilliant. She has blown our hearts and minds more times than we can count throughout her life and especially over the past year. It is hard to believe, looking at her now, that she was ever that closed-off, lumpy, silent 18 month old, or the 2 year old not yet walking or talking at her party, or the 3 year old who only used scripting. It doesn't seem possible that she was ever anything other than this intelligent, hilarious, joyful, bubbly, amazing kid who is filling every corner of our lives with goodness and light.

2009 was the year we stepped out of the dark cloud cover of the frightening unknown and into a well-lit world that mostly makes sense again. Her developmental gaps have closed, the episodes have tapered off, she hasn't been to the pediatrician in over a semester, most of her specialist appointments are now only an annual event. We don't have a whole lot of answers still, but the questions seem to matter much less now. 2009 gave us back a sense of normal-people normalcy, and though we might never have a life without specialists and tube feeds and a laundry list of medications, this new stage of life with KayTar was well worth the wait. I can hardly wait to see what 2010 holds for us all.

2006, the year this blog began.
2009, the year that rocked.