KayTar's year in review

I know, I know. I'm supposed to be gone or packing or whatever. But Beck did a year in review blog and I couldn't resist. KayTar has had a big year.

January:
She started the year with an episode. I'm hoping we don't see a repeat this year.
We found out she had a genetic mutation that was "indeterminate". Of course it was.
She took her walker for a spin out and about.
We had our first genetics appointment.
She had another episode.
KayTar got strep and a stay in the hospital.
She learned to say "No." in the hospital of course. What better place to say no?




February:
She had an episode. SHOCKING!
Another episode, and we took her off preventative meds.
Oh, look at that! Another episode!
She turned 2! Happy Birthday!
She started taking steps.
She had a blast at her party!




March:
Episode! Maybe have dampened our plans to talk our friends into procreating.
Her eyes got a mind of their own!
She had an EEG, it came back normal.
She learned to work her little pop-up toy. Laughter ensued.
She had another MRI.
I posted some Now and Then video. The change was shocking.
MY BABY WALKED! 25 MONTHS OLD!
We found out her feet can do a 180.
She had an ABR, and we found out she has unilateral hearing loss.
I wrote a big ole post about all her little oddities. It is still on my sidebar.




April:
You guessed it! EPISODE!
We saw the ophtho, ped, and gastro doc all in the same day!
She was sick, but it wasn't strep. For once!
I talked about my fecal midwifery skills. Yuck.




May:
KayTar jumped (or slid) into my parent's pool.
She was cleared for her hearing aid by the ENT.
She got in touch with her sensitive side.
She busted her nose open. Happy Mother's Day!
We looked at the history of her sitting and the discovery of her blessed W.
She signed "I love you." Melting ensued.
She had a weird episode.
Someone told me that she needed to get rid of her bottle. I cried.
She started reading. Or we finally figured out she was reading.
We found out seizures weren't out of the question.
She started to play at eating.




June:
She had a CT scan and it spawned a blog on her verbal development.
Her insurance informed us they were shutting down.
She got her new ear!
She did more reading and swimming, too.
Episode. Yup yup.
We worried about the eye movements, drop attacks, and her inability to feel cold.





July:
She had fun at genetics.
She had a triple header, genetics, GI, and neurology.
We worried some more.
EPISODE!
EPISODE THE NEXT DAY!




August:
She had lots of eye movements and drop attacks.
She had croup.
She had a hospital stay for a long term EEG and LP.
I started worrying about the district transfer.
We saw the ped. She got shots. She held onto that croup for ages.




September:
She got sick. It was strep.
She made some strides in various areas. Yay!
She was sick for so long, it became routine.
She started wheezing and having trouble breathing. Hello inhaler.
She had her big ECI evaluation.
I dissected her verbal development.
She ate like a kid for a weekend.
Then she had an episode.




October:
She started to have painful light sensitivity for no apparent reason.
She somersaulted!
We had her first district meeting.
We waited a long time for her EEG results. It made me crazy.
We thought we had an answer. This post makes me queasy now.
We rushed to the geneticist to follow up.
She had another LP. Insert frowning face here.
She related her first experience. It was about doctors. SHOCKING.
Episode.




November:
Worked on some more district transfer stuff.
Three more doctor's appointments and KayTar started showing major signs of anxiety. We took a therapy break and a doctor break.
We found out the test was wrong. No answer.
She moved into a big girl bed!
She started eating better.
She started reading like crazy.
She used a "because" statement!




December:
Strep and her therapy schedule took some hits.
She had a walkerversary.
More speechy talk.
She enjoyed her first Christmas.




Whew. That made me tired just typing out. It was quite the year for her. I hope this one is a lot more low key.

Okay, now I'm REALLY done blogging for a bit. ;)

So long, farewell...

I'm flying away on Tuesday for my sister's wedding and perhaps even a splendid blogger meeting. (Jealous? Yeah, you are. ;) So until then, I'll be busy packing and enjoying New Year's and you probably won't see much of me. I'll still be visiting blogs here and there when I can, but definitely not as often as usual. And of course, I won't be posting here for a bit. My blog is secret, as in no family members or friends know about it outside of Josh, so I can't really openly blog while on vacation. I might be able to sneak in a quick photographic update here and there, so you might see me a little.

Here is a little peek at my darling children trying on their fancy wedding get-ups.

(Except cream tights instead of socks and the following shoes)


(Except cream tights instead of bare feet and jeans)

(Except with shoes, of course)

And just because they are so cute...










Hope that tides you over for a few days. I'll be back with updates and loads of beautiful photos! Have a happy (and safe) New Year!

PS: If you can spare some good, strong, positive vibes and prayers I'd really appreciate it. KayTar is on day 67 without an episode, the longest she's ever gone is 69 days without one. In our waiting for these to happen, we have green days, which are pretty carefree and we are fairly certain one will not happen. Then we have red days, which are historically high risk days. Around the 15th day without one, we start expecting one, these are red days. If she doesn't have one by day 20, we feel free until day 30. Days 30-35 are red, and then we feel free until day 45. 45-50 are red, and then we feel free until around 68 or so, and then EVERY DAY is red until it happens. Because it always happens. We will be on an airplane on two separate red days, and we will be on vacation for 5 of them. My sister's wedding is on one of them. This makes me very nervous. It is hard to get her comfortable even at home when this happens, on an airplane I just can't imagine. The screaming and writhing and vomiting...oh my. Just pray we don't find out. Pretty please?

KayTar's First Christmas

Nope, not this one.



Or this one.



This one.



The very first Christmas she realized anything out of the ordinary was happening around her.

The first Christmas with the words "presents" and "Santa Claus". The first Christmas with spoken words at all really.

The first Christmas she could walk.

The first Christmas she helped pass out presents (she can read names, you know) and the first Christmas she opened her own (mostly) and helped others open theirs.



The first Christmas she noticed that there was a spread of new play things in the living room.

The first Christmas she could stand up.

The first Christmas she woke up with the family. Last year we were afraid that waking her would trigger an episode. This year we know that nothing is going to trigger it unless it was going to happen in any case. Even at 5 am. (BubTar was up at 3 am, but my dad talked him in to resting a bit longer)

The first Christmas she said "Fank you." after opening each gift.



The first Christmas my sleepyhead was awakened with only the whisper of, "Do you want to open those presents now, KayTar?" From way back in her mostly sleeping brain she answered "Yes." and began to wiggle into consciousness. We had to turn every light out for a while, because it was just too bright for her, but eventually she adjusted.

The first Christmas she was excited about having company and about going to visit others.

The first Christmas we heard her sing Christmas songs.

It was our first Christmas that we enjoyed entirely as a family, and were able to see the joy of it all reflected in both our children's eyes. It was glorious.

Of men and dollhouses.

Photographic evidence of why the two should never be combined.





Guilty as charged.

The magic is alive and well.

I'm not sure if I've mentioned this, but BubTar was deeply regretful after selling his first tooth to the Tooth Fairy for a paltry sum of money. He woke up two dollars richer and eyes full of tears. It was his TOOTH! His baby tooth! He was going to keep it forever! He wanted that tooth back, but all sales are final in regards to the Tooth Fairy or so we thought.

It seems that Santa (yes the very same Santa who tracked down a certain Bionicle) was able to talk to the Tooth Fairy and pull a few strings and retrieve that long lost "Toothy".


(click to enlarge)
You should have seen his face. It was priceless. Priceless.

I am so thankful that we've been able to enjoy yet another magical year with BubTar. I know the number is finite and somewhere in the not-so-distant future will end altogether, but for now I am completely happy having a little boy who wholeheartedly believes that Santa has the foresight and clout to get a lamented tooth back from the evil clutches of the Tooth Fairy. And that, to me, is the joy of Christmas, alive and well for one more year.

What a Rebel.

I opened my last gift this morning and my head exploded from the excitement of it all.

I might have looked like this:



Or this:



And I said, "You better not be messing with me."



"I mean it guys...you better not be messing with me."



Once I knew it wasn't a joke, I probably looked like this:





Or maybe like this:





And maybe I kissed it:



Then I inspected it:



There may have been tears of joy:



And then, I was just happy:





And I celebrated by taking way too many pictures.

I bet you're glad I'm not going to bore you with THOSE. ;)

Merry Christmas, friends!


By the way, I got a Canon Rebel. ;)

Merry Christmas from my little Tars.

Of course.

I'm sick. Some sort of something that makes it feel like my left cheek, ear, and throat are going to explode, I'm guessing a whopper of a sinus infection. I always get sick at the holidays. I spent all of my first holidays in the hospital and evidently, I thought it was a LOVELY tradition which I've done my very best to continue. I checked the archives and last year it fell on Thanksgiving rather than Christmas, but still, sick every year.

So the score is now roughly:

TRADITION: 24

IMMUNE SYSTEM: 0

So I'll be spending the next couple days like this:




Have a wonderful, warm, peaceful holiday. I'll be back at some point with photos of a couple of joyful, bright, shiny faces...sort of like these:



Merry Christmas, friends.

ETA: Urgent care doctor said it's strep. Of course, it is.

In heavenly peace

Jakie passed away last night at 11pm.


Rest well, sweet boy. Rest well.