Wednesday, June 19, 2013

Moving...again!

Our new blog home, Jux (which I LOVE), is closing its doors, so we had to find a new home. I'm just not comfortable making this old blog public, I keep it more for myself at this point than anything else, so we have a new home at: http://ourlifewithk.wordpress.com/ . I hope you'll follow us there!

We had a very rough week, KayTar was in the hospital for much of it and we're still not anywhere close to her baseline here at home....you can catch up on all that excitement over there, too! :)

Tuesday, May 21, 2013

So, this happened...





I graduated with honors this past Saturday! Feels super good to be done! Originally, I planned to go to medical school next, but I'm not willing to sacrifice that kind of time anymore. KayTar is my #1 patient and the rest can wait. Knowing your kiddo has a progressive disease really reinforces the message that time is a limited and precious commodity and something just are not worth the cost. A PA graduate program is definitely on my radar for the future, if/when the time seems right, but for now I'm just DONE! Hooray. We all survived! Yesterday at her doctor's appointment, KayTar was telling everyone (receptionist, doctors, random folks on the elevator) "My mom graduated from college this weekend!" :)

Other important updates:
- My mom's surgery was successful and she is cancer-free! She still needs to be watched closely, but so far, so good.
- KayTar is still happily married and doing pretty well medically-speaking. Her gut is still iffy and we may be heading to a gj-tube and she needed oxygen after field day last week (the temp is climbing outside, so this will likely become more frequent), but overall her docs agree she is doing well and has been pretty healthy.
- KayTar finally has Medicaid! WOOT!
- We had a great time on our RV trip, read about it here: https://lifewithk.jux.com/1139372


Maybe now that I'm done with school, I'll have a bit more time to update here...but if not, you can always keep up with K, at least, on the other blog!

Wednesday, March 06, 2013

Hey! I'm still alive!

Soooo, yeah. I started a new blog and then just disappeared here. If you are looking for me and KayTar, we can be found here, http://lifewithk.jux.com/ (I would put a hyperlink, but Blogger is being a twerp). I really like the format over there! But I have a bit of time so I wanted to post a little update here, too.

1. My mom has breast cancer. She should be having surgery this month and hopefully she will get the all clear after that, but we shall see.

2. KayTar is married now. Want to know more? https://lifewithk.jux.com/994929

3. BubTar just got his Arrow of Light in cub scouts. He'll be a boy scout soon!

4. I got my graduation application approval notice today! Woot! Almost FREE! (also, I have a wicked case of senioritis and need to buckle down...)

5. KayTar had a rocking Harry Potter party for her EIGHTH birthday. I had a lot of fun with it! https://lifewithk.jux.com/991567

6. We are going on a RV roadtrip for Spring Break next week! 

7. Other update-y stuff... Still don't have Medicaid, AGH! KayTar DID lose half her docs and therapists, AGH! But we're making progress, so on we stumble. ;)

8. Kids are still cute. See?



Tuesday, January 08, 2013

5 Things...

that are making me crazy!

1. We got a bill for $308 for KayTar's last eye exam. Thankfully, when I called today, it turned out it was a simple error and they did not have her new insurance on file. WHEW.

2. Medicaid or lack thereof. On Christmas Eve, we got notice that KayTar would be receiving Medicaid. YAY! But then we talked to our caseworker and he said that should NOT have happened yet. He was super confused and talk to his supervisor and his supervisor's supervisor and the person who approved us for Medicaid and yesterday I got a letter saying she was denied Medicaid. Boo. We're still in the waiting process for MDCP, so who knows when she will actually have Medicaid.

3. CHIP renewal. Since there is no word on how long it will take to get her on Medicaid, I have to make sure she stays on CHIP and we just got the renewal paperwork for that yesterday, too. JOY. This makes me incredibly nervous every time because if she loses coverage, we would lose access to so many things that are necessary for her life. It makes me sick to even contemplate that reality!

4. Current plan no longer contracted with half her docs and all her therapists. We also got a letter informing us that her current health plan will no longer be contracted with one of her hospital systems (where she sees half her doctors and all of her therapists) as of March. But if we switch plans, the other half of her docs (the more critical doctors, actually) and her hospital will not be in network. When can we get Medicaid and stop playing this game?!

5. My school stuff. My last semester of undergrad starts next week and it seems like more than half my schedule is up in the air. It has been impossible to get an appointment with a counselor, so we are negotiating via email at a snail's pace and last I heard she wanted me to take 2 classes I took a community college (and made A's in). I'm waiting impatiently to hear whether it was an oversight or something more. I also have to decide on whether I am taking Special Projects (also known as a semester of busy work and doing a professor's grunt work) or Field Experience. I'm hoping for Field Experience and waiting to hear the official word on whether a possibility is going to pan out or not. Either way, I have to decide and get the forms turned in by Monday. I can feel the clock ticking! Agh!


On an unrelated side note, I set up a new blog of sorts. It is mostly meant to chronicle KayTar-specific life for the general population. I've never felt comfortable sharing this blog with the wide world of people we know, but I know there are friends and family who might like more detail than our yearly Christmas letter and my Facebook status updates provide, so that is the purpose of this new site. I will still blog here and some of the content will be duplicated, but things like this post will stay here and not there. The bonus is that it is much more photograph friendly. Check it out: life with K.



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!