Eight years ago today...

This kid...



married this kid...



who happened to be wearing sneakers.



They kissed...



and cut the cake.



She might have been a little too generous with his bite of cake.



Then they shared a cakey kiss...



and made a toast to the rest of their lives.



Eight years later, I still love sneakers, cake, and YOU, Josh. Happy anniversary! Here's to many more wild and wonderful years.

Special Sunday: Ridemakerz

Special Sundays are usually chosen by one of the kids and uninfluenced by Josh or I, but when I was invited to a Ridemakerz promotional party, I offered it up as a suggestion for BubTar's day yesterday. He accepted, though, he did try to talk me into control of next Sunday, just to see if it might work.(it didn't work.) The kids have been looking forward to it all week, but unfortunately, KayTar got sick Saturday and she and Josh had to miss out on the fun! I invited our pediatrician and her kids along, but due to scheduling, they were only at partial capacity, too. It ended up just being she and I and our oldest boys. We still had a great time and we were able to make cars for the missing members of our party! We were assigned a crew member who walked us through the store, directing us to chose our parts and then showed up how to assemble them.

On KayTar's behalf, I chose (we had looked it up online beforehand):

Pink car body
Street chassis with R/C
Yellow tattoo wheels
Daisy rims
Heart-shaped grill
Silver spoiler
Purple neon lights (underneath)
Flower, butterfly, and turtle decals


BubTar chose:

Red fire truck body
Monster truck chassis with R/C
Flame wheels
Cyclone rims
Emergency vehicle lights
Dump truck kit
Exhaust pipes
Side pipes



We encountered one minor problem, although KayTar's lights and music worked at the store, we didn't test the R/C capability until we got home and it turns out her chassis was defective! Taking the brand new toy away from a sick kid who already had missed out on all of the fun went over about as well as you might imagine, but the guys in the store fixed us right up and I was able to deliver the car back to its owner in working condition. All of the kids are LOVING their cars and although there IS an available online counterpart to race their cars, mine strongly prefer the real thing, which is increasingly rare these days!

I'm thrilled we had the chance to create these custom cars and Ridemakerz gave me the chance to pass along the same opportunity to not one, but TWO lucky readers. Actually, Ridemakerz gave me the first $100 gift card and our fabulous pediatrician donated her $100 gift card to be given away here, too. To enter, all you need to do is leave a comment on this post now through 11:59PM Friday, May 22nd, with a valid email address in your comment. One entry per valid email address, please! Open to residents of US and Canada. You also need to be willing to send me your mailing address if you are selected as a winner. I'll contact the two winners via email and announce them here on Saturday.

If you do not have a Ridemakerz store nearby, never fear, you are still able to build a car online and have it shipped to your home (they do ship to Canada, as well, for an additional cost). KayTar and I utilized this feature to build her virtual car beforehand, so I knew which parts she wanted once I got to the store. It was very user-friendly and set up much like the store itself. Of course, you don't get the hands-on, build it yourself satisfaction, but you'll still get a really cool car.

The ARD

It was lovely! Who wouldn't love to sit in a meeting and hear teachers and administrators gush about your child? Of course I think she is brilliant, adorable, and hilarious, but it is nice to know everyone else does, too!

She has made excellent progress with her goals for this year, though, she hasn't quite mastered all of them (hello, potty training!). I can hardly believe this too-smart-for-her-own-good chatterbox was only speaking in exact quotes, unable to answer questions at this time last year. It doesn't even seem possible! We discussed her new goals, which I can give in more detail once I get my copies of the meeting, and set up her accommodations for next year.

She may be changing campuses next year, which makes me a little sad as I have LOVED everyone we've encountered at her current campus, but the opportunity sounds like a good one. They are setting up an advanced PPCD classroom for the district, so the kids who naturally excel, but also need special education services can meet their IEP goals while being challenged beyond the scope of those goals. There will be a special education teacher and a general education teacher present at all times and the class will be a mixture of high functioning special education students and general education peers. KayTar was nominated for being such a little smarty-pants. This will be the first year for the program and they aren't certain it will get off the ground in time, in which case she will stay at her current campus with her current teachers.

I know many parents have trouble with their children getting appropriate service and placement, but (with the exception of that little attendance issue earlier this year) we have had a WONDERFUL experience with KayTar's school and our district. The administration and staff have been friendly and helpful, and everyone knows and loves KayTar. You just can't resist that kid!


This is her school picture. As we waited to go into her ARD, the front office worker asked her, "KayTar, did you show your mom your picture yesterday? I saw it when it came through the office and it was so beautiful!" KayTar made eyes at her and said, "And, did you think I looked just FABULOUS?!" The entire lobby erupted into laughter. She sure is something.

I'm outsmarted, daily.

KayTar has learned the "Here comes the bride, big, fat, and wide!" song from her brother and just looooves to sing it. We're not so fond of it and have been discouraging it. "It isn't a very nice song, KayTar." we say. A few days ago, she prefaced the song with, "Okay Mom, I'm not singing this to you or Daddy or BubTar or ANYONE. I'm singing it about the HOUSE, because this house is SO FAT!"

How do you argue with that?

****

KayTar: I have to pee.

Me: Want to sit on the potty?

KayTar (wearing butterfly wings): No, butterflies don't use a toilet, Mom.

They sure don't.

****

KayTar: Can you change me into my princess dress?

Me: KayTar, I really don't want to change your clothes a hundred times again today.

KayTar: Please? It would make me SO happy AND I will give you this penny--well, actually it is a FAKE penny--but I will still give it to yoooooou.

Somehow, that actually worked.

****

Me: KayTar, do you have a dirty diaper?

KayTar: Yeah. Are you happy I told you I pooped? (she has a habit of lying about it)

Me: Yes, but I would be happier if you just pooped in the potty.

KayTar: But, you are still happy. That's a COMPROMISE.

We are clearly in trouble.

Happy Mother's Day

Photo and video editing at www.OneTrueMedia.com

Two years ago she was just learning to sign and now she's reading poetry to me. I can't believe how far she's come!

Mrs. 'Tar goes to Washington

Wednesday night I flew into Baltimore at about 11pm. Weather and traffic were terrible (it was very nice to have a chauffered car waiting for me so I didn't have to hail a taxi) and it was about 1am before I got to my hotel room. The hotel reminded me a lot of the W in Chicago and I was a little sad to see the lobby wasn't filled with drunken bloggers when I arrived! (Suggestion to Swanky Hotels: You should keep drunken bloggers on staff to loiter in the lobby, they really brighten the mood.) Once I got to my room, I plugged in my laptop and much to my dismay couldn't connect to the Internet. As my hands began to shake from the early symptoms of withdrawl, I dialed the tech support line and whoever it was that answered the phone in the middle of the night was a lifesaver. He hooked me right in, free of charge! After briefly checking in online, I hopped in the shower and tried to go to sleep, but it takes me forever to fall asleep in a new place! This was actually the first time I've stayed in a hotel all by my lonesome, which was a little strange, but also nice and quiet.

My alarm went off at 7am and I started to get ready. I ordered breakfast as advised, but it did not sit well and I ended up getting pretty sick. I thought I had come down with KayTar's stomach virus, but thankfully that wasn't the case. I was fine the rest of the day, just suffered from low blood sugar symptoms once a few hours passed without food. After checking out, I walked over to the CDF office with a very nice man named Thomas and we met up with other participants and drove to the clinic. It took a while for the celebrities to arrive, so we all had a chance to chat a little. I spoke with Sharon Ladin who told me about this new website that was just recently launched Speak Now for Kids, which is advocating for children's healthcare reform and is looking for stories from all across the nation about uninsured and underinsured children. (if you have a story to share, please do!).

Once the celebrities arrived, we all took our seats in a big circle of chairs (surrounded by media, EEK!) and started the discussion. I was the first speaker! Two other mothers were present to share their stories, which dealt primarily with being underinsured, and several of the doctors from the clinic shared their own experiences with patients in varying situations. I think it went very well! From there, we went downstairs and a few of the celebrities read stories to the children in the clinic, after which we all hopped on a bus and drove to the Capitol. While on the bus, I sat next to Regina King and chatted a little while scarfing down some pasta and a delicious brownie (with nuts! it felt so rebellious!) and by that time we had arrived.

It had turned into a beautiful and was even a little warm on the long walk up to the building! I'm not used to running around in heels and my feet are paying for it today! On the way up, I had a chance to talk with Keri Russell and Jessica Alba. Everyone was very friendly and personable. It was a wonderful group of women! At varying times of the day I also had the pleasure of talking with Jurnee Smollett, Ali Wentworth, Malaak Compton-Rock, Michelle Fenty, Katie McGrath (JJ Abrams' wife, who was incredibly kind and passionate about children's health reform), as well as many people from the Children's Defense Fund, including Marian Edelman Wright, and women from related organizations. It was quite a day, that's for sure.

Once we arrived in the room, which was gorgeous, we were joined by four congresswomen from varying states and once again I was able to share our story. It was warmly received, as it usually is and I hope these women will be able to use it as a reference when explaining the crack in the system to those who cannot see the cracks for themselves. There are millions of children falling straight through the holes in our current system, just like mine did. We have say enough is enough and fix things and fix them the right way this time.

After that meeting, Susan Gates from the CDF walked me back to the office so I could catch my car back to the Baltimore airport. My driver totally hit on me, which is one of those sentences I never thought I'd write, probably because I don't have many drivers and also because I've been married for (a month shy of) 9 years and don't get hit on regularly. He was laying it on thick though, it was pretty entertaining, and he got me to the airport on time, too! The security gate was pretty backed up and I made it to my gate just in time for boarding. Once I got to the airport here in town, I still had another hour of driving ahead of me (this time I was driving myself and no one was complimenting me, what a pity), but Josh let the kids stay up to see me. KayTar was standing at the garage door and shouted "HI MOM!" and squeezed me to death when I walked in. BubTar was like, "What'd ya get me?!" And just like that life went right back to normal.

It was such a whirlwind trip, I was there for less than 24 hours, but we really managed to pack it in. I met so many wonderful people and heard so many different stories, it was a little overwhelming. It will probably take a few days to really process it all, but I'm so glad I had the opportunity to go and share our story once again in a forum that will allow our voices to be heard far and wide. Sometimes I really wonder how I ended up in the middle of all of this, but I think in the end it will pay off, not just for my children, but for all of the children of this great nation.

Today KayTar's story was featured in Marian Wright Edelman's Child Watch Column. You can follow that link to read all about it. If you are new to my blog and don't know about our insurance struggles, it is an excellent summary.


PS: Can you believe I don't have a SINGLE photo? It was raining when I left the hotel so I kept my camera in the suitcase so it wouldn't be damaged. I should have photos by next week, though, and I'll be sure to share them.

PPS: I didn't proofread this. Don't judge me. ;)

PPPS: I almost forgot, I made a 99 on that exam I has to take on the same afternoon that I flew to Baltimore!

If KayTar was a blogger...

Yesterday KayTar had a neurologist appointment and while we were at the hospital, we also had her labs run (a new RAST level for her nut allergy). At check-in, she asked me, "What are we doing here?" And I said, "I don't really want to tell you yet. I'll tell you in a little while, though." To which she replied, "Ooooh! Is it a SURPRISE! I love SURPRISES!" which made it clear that I would have to tell her, because a needle stick is a rather unpleasant surprise and I don't want to ruin the reputation of surprises altogether. "Well, KayTar...you have to get a little poke, but THEN YOU CAN HAVE A TREAT!" Alas, the cat was out of the bag and the laboratory waiting area was packed. We would have a long wait with a child who knew that she was about to get the needle.

In an effort to keep her mind off of the looming POKE, I pulled out her notepad and wrote a sentence in it, "KayTar is 4 years old and she likes flowers and butterflies." She loved reading about herself in her book and read the sentence several times. Then she pondered it for a minute and said, "You forgot something. Write this, 'She wears diapers.'" So I wrote it.

There was a very small baby sharing the bench seat with us and he was wearing a baby t-shirt with a blue, smiling whale on it. KayTar admired it and then said, "Write this in my book, 'KayTar likes whales.' Wait! Say THIS, 'KayTar likes HAPPY whales. And mermaids.' No, wait! 'KayTar likes happy whales and ARIEL.' Yeah, write that."

Then she said, "Oh! Start a new story! Say this, 'Dr. Neuro lost his clacker. His dog ate it or a kid broke it.' That's a GREAT story." (KayTar was looking forward to playing with his clacker, those plastic clapping hands that clack together, but sadly he no longer had a clacker. He first told her that his dog ate it, then he said maybe another kid broke it.)

The next time she got worked up about the threat of the needle, I suggested we write in the book some more, "What else can you think of that we should write?" And she said, while quietly sobbing, "You should write, 'Poke.'" I asked, "Anything about the poke? Should I write, 'KayTar doesn't like pokes'?" She said, "No, just write 'Poke.' and make it BIG." And that is how her story ended.

The author peers out from behind her laptop.

PS: It is NOT mitochondrial disease. Although she has more mitochondria than your average bear four year old, the rest of her tests checked out okay. The neurologist said he doesn't really know what else we can test for, so it looks like we've come to the end of another road without any answers.

To Do

I have a file open on my computer with a lovely little list on it, it looks something like this:

Saturday:
Haircut
Study chapters 18-20
Work on index cards for Pathology final

Sunday:
Study chapters 21-23
Work on assignment
Complete index cards for final
Shop for new shoes

Monday:
KayTar's neurology appointment
Assignment due
Study cards for final
Shop for new pants

Tuesday:
STUDY FOR PATHOLOGY EXAM
PREP SPEECH
Pack for DC
Pack for the kids
Write instruction sheets for my mom and Josh

Wednesday:
Take pathology exam
Fly to DC

Thursday:
Speaking engagement in DC
Fly home

Friday:
Study for pathology final
Review math concepts

Saturday:
Study for final
Review math concepts

Sunday:
Study for final
Review math concepts

Monday:
BubTar's well-check
Pathology final

Tuesday:
Turn in financial aid paperwork
Take math placement exam

Wednesday:
Register for summer/fall courses

Thursday:
Hospital volunteer orientation

The list had to be written because every time I would think of exam prep and speech prep my brain would start making this high pitched buzzing noise that made it impossible to concentrate. Lists are the cure for that high pitched buzzing sound (I think the Island on LOST finally got its hands on a cosmic notepad and was able to write down the infinite storylines it was attempting to follow and TA DA! No more buzzing!) and once it was all written down, it was instantly manageable again. Of course, there are a million little things not on the list, things that keep the house running and the children cared for that are more akin to breathing than they are Things to be Done.

This weekend I spent roughly eight hours each day reviewing pathology, which was interspersed between the oh-so-frequent cries of, "MooooooOOOOOoooooom!" and I thought, "Welcome to the next 8 years of your life, Kyla." Massive amounts of studying in the neediness trenches that is motherhood. Dad gets a lot of good press around here, as KayTar likes to say, "Daddy is my favorite! He's the prettiest!" but when push comes to shove, it is, of course, Mommy who is most needed. Daddy is better left for Plan B if Mommy denies a request, like if Mommy was to be unreasonable and tell a vomiting child that she CANNOT have some bacon RIGHT NOW, then Daddy is called in for an alternate verdict.

Earlier this week, Mommy went out for dinner and drinks with friends and within 5 minutes of being seated at the table, her cell phone rang and there was a hysterically sobbing four year old on the line, saying "I--(gasp)--WIWWY--(gag)--MISS--(gasp)--YOU!--(sobsobsob)" Mommy may not be the prettiest, but she is well-loved all the same. The phone call only made me feel only marginally guilty about going out for the evening, but exponentially more guilty about the decision to spend nearly every evening in the next year out of pocket. Guilt, the native language of motherhood. We'll all get through it fine, I know, but sometimes you can't sidestep the guilt entirely.

This list and the time frame it represents are a microcosm of my life, obviously; sick kids, lots of studying, a healthy helping of maternal guilt, doctor's appointments, exams, college, and various other time commitments. The good news is that by Sunday night, everything that should have been was neatly checked off and tucked away appropriately; children snug in their beds, notebooks and index cards filled with appropriate information and filed away for later review, assignments turned into professors, and I still had time to watch a bit of television with my husband. As I curled up under my covers last night, exhausted and content, I thought, "Yeah, we can do this."

This little sickie...

This little sickie has a fever,
This little sickie stayed home.
This little sickie did throw up,
This little sickie is dry.
And this little cried, "Germs! Germs! Germs!" all the way home.




This little sickie started running fever on Thursday morning. Early Thursday morning. Is-this-even-considered-morning Thursday morning. He's run a steady low grade since then. He missed two days of acheivement testing! We didn't take him in to the pediatrician because he didn't seem to be feeling too bad. Yesterday evening, his ears started bothering him. If he's still feverish on Monday, I'll take him in. He was supposed to go to my parent's house today to spend time with his cousins (and even go swimming!), but he'll be staying home instead. As you can imagine, he is less than thrilled. Poor little monkey.



This little sickie started vomiting out of the blue last night. It happened once, I cleaned her all up, put her in the sick seat and I stepped outside to talk to Josh about her meds (he was doing yard work). We were debating whether to give her Zofran, but didn't really come to a consensus. I came back inside and BubTar said, "Well, she just threw up EVERYWHERE." Zofran debate solved, instantly. And by the way, transdermal Zofran is a genius invention. If your kid can't keep anything down, are the liquid meds are going to make it through? Nope. Though, if you rub it on their skin, they can't yak it back up. Perfection! She continued to vomit last night, but with round-the-clock doses of Zofran (like say, setting an alarm for 3:30am so she doesn't miss a dose) it seems to be under control for now.

She's kept a small amount of water down this morning, though, we are playing a little Dry Diaper Roulette. As long as she holds down some clears this morning, it should work itself out. She also seems to be acquiring a bit of a germ phobia. I caught her swiping at her arms and shrieking "Get them off! Get them off!" the other day, which was a mildly disturbing sight, but it turns out she had touched something of her sick brother's and then thought his germs were attacking her. I said, "Well, let's just go wash your hands." But it didn't end the preoccupation. Every time stomach starts to hurt, she shouts, "Moooom! The germs won't leave me alone!" This morning she woke up and said, first thing, "The germs are still getting me! I need to wash with soap and water to get them out!" Poor kid.

The labs showed...

Nothing. Of course!

On the bright side, here are some photos of KayTar and her new husband.

Episode #36

In the spreadsheet record I keep, it says:

April 28, 12pm, Duration 4 hours, Altered level of consciousness, vomiting, and vertigo

We had a completely average morning yesterday, KayTar dressed up as a princess and pretended to marry our giant crayon bank ("Can this bank be a boy, Mom? Because I want to marry it!"), she had her morning feed and we stuck to our every day routine. I dropped her of at school on time, went from the school to Subway to grab a sandwich and by the time I walked in the door at home, the phone was ringing. It was the school. She said that KayTar was vomiting and I knew. My heart raced, by stomach dropped, I called Josh to tell him. I knew she wasn't sick when I dropped her off, if she was vomiting, there was only one explanation.

I raced to the school and she was sitting in the nurse's office, crying. I sat next to her and she wilted onto my lap, and that was that. She had told her teacher that she felt spinny, and the teacher knew she didn't look right and sent her to the nurse's office, where she promptly bathed the floor, the nurse, and herself in her morning Pediasure. Then they called me. This is the first episode she's had at school and it is an enormous relief that they recognized what was happening and called in me a very timely manner. I've been anxious about that all year, but when it happened it was taken care of beautifully.

From the car, I called the pediatrician (which I try not to do, but I made an exception this time), she put a call into her nurse to get labs ordered and KayTar and I headed to the clinic to pick the orders up. We went to the lab and they drew some blood (upside to having a mostly unconscious kid, no fighting for the draw...downside, that makes it sadder somehow). Then we came back home to let her rest. She woke up about 4 hours after it started and said, "Where are my red high heels?" Always true to character, that one. Within minutes she was in full princess regalia again, slow dancing with her crayon bank husband.

As these things go, it was an easy one; only 4 hours, no pain, only one round of vomiting, we were even able to finally get labs; serum glucose, complete metabolic panel, CBC with differential, and something else that I'm forgetting. Today we should have the results back and I'm hoping that we at least get a CLUE from this. I'm not sure why after 6 months without one, she seems to have picked up right were she left off. It might have been an easy one, but I'd prefer having none at all.

This is what they mean by hypermobile joints...

And nope, it isn't a fluke.

Dear Future Kyla,

Please read this letter in late March of 2010. By this time, you will likely have forgotten how maddeningly frustrating planning BubTar's mildly disappointing party was this year (2009), the memories of it will likely have been replaced by massive amounts of Calculus, Biology, and Chemistry. To ensure the same mistakes will not be made twice (or three times in some instances), I felt it prudent to send you this message.

First of all, do NOT allow the delightful birthday boy to choose an obscure theme for his party. You've allowed this to happen two years in a row (Bionicles, Ben 10) and made it absolutely impossible to find readily accessible party supplies that stick to the theme. Online suppliers are wonderful, but they also can fall through, leaving you scrambling for a freaking pinata less than 24 hours before the party. March the birthday boy down to Party City and allow him to choose ONLY from the themes at his physical fingertips. Pretend there is no Internet Marketplace. You'll thank me.

Second, do NOT choose an outdoor venue. Yes, it worked out wonderfully in 2008. The sun was shining, the kids ran and played, and the adults were free to have conversations, but in 2009, a great monsoon had just swept through (leaving me/you stranded at a friend's house overnight after Bunco, leaving Josh to make the cupcakes and goody bags all on his own), leaving the park a giant mudpit, complete with pools of water several inches deep. Let's not talk about the mosquitoes, or the way we rushed through the party once we heard thunder rolling in the distance. I don't care what the forecast tells you (like, 80 degrees and sunny!), Future Kyla, don't fall for it.

Third, before scheduling the birthday boy's party, make sure that TWO OTHER CLASSMATES are not choosing the same date and time, or the guest list will dwindle down to next to nothing. He's a good sport, but let's not put him through this situation two years in a row. In fact, you might even contemplate not inviting the entire class, perhaps a sleepover with a few close friends will suffice. I'm sure you are busy with school, so this might save you quite a bit of effort. Order some pizza, rent some movies, and let them go nuts. I'm sure you have studying to do and won't mind being up all night. Use the time wisely. Don't waste the energy on a big bash when he would be equally happy with quality time with his best friends.

Fourth, don't buy a pinata at Target. Just don't. Josh had to slice this one open with a pocket knife to even give the kids a shot at getting to the candy.

God speed, Future Kyla. Give that nearly eight year old a kiss for me. From way back here at seven, I simply cannot imagine him at eight, but I'm sure it will be wonderful. And just so you can recall what seven looks like, I've attached a few photos.

Sincerely,

Kyla circa 2009

SEVEN!

This morning he woke up first, as always, and he woke up his sister, as always. I awoke to their voices in the living room.

"Is there anything you want to say to me today, KayTar?"

"No."

"Do you know what day it is today?"

"The day we go to Putt Putt Funhouse!"

"No, that is this weekend. What is TODAY?"

"Monday?"

"No. Something about ME, something about ME today...what is it?"

"You have school?"

"Yes, but that isn't it. What is SPECIAL about today? About how old I am?"

"Six!"

"No, I'm seven. What do you want to say to me?"

"Good morning?"

At this point, I interrupted, "JUST SAY HAPPY BIRTHDAY TO HIM, KAYTAR!"

"Happy birthday, Bubs!"

"Thanks!" he said, genuinely pleased even though it took several minutes of dialogue and a direct command from me to get her to say it.

He was completely dressed and ready for school before the rest of us had even rolled out of bed.

****

We let him open a gift this morning, a giant Bionicle. He was thrilled and wanted to start building it right away. Since he was completely ready for school already, we let him spend 5 or 10 minutes working on it.

****

KayTar and I brought him a special lunch at school today, his choice, Burger King. We got to sit at a special table at the front of the cafeteria and he was ecstatic.

****

I made secret arrangements for his best friend to come home with us after school and spend the night. When his friend told him he said, "Mooom, is he REALLY?" And I said, "He sure is!" BubTar, shocked by the blatant rule-breaking, said, "But Mom, its a school night!" What good are rules if you can't break them now and again?

****

Tonight, we are having his favorite dinner, barbecue chicken sandwiches with corn on the cob. My parents are going to bring one of his gifts over this evening, too.

****

All in all, I think seven is off to a great start!





Happy birthday, my blue-eyed boy!

Hers/His

Today we had an appointment with KayTar's feeding disorder specialist/gastroenterologist and she doesn't need to be seen again for a WHOLE YEAR! The last time we were there, about 6 months ago, she was about 29 pounds and now she is up to 34 pounds! THIRTY-FOUR! Again I say, if your child has major feeding problems and a doctor has brought up the possibility of a feeding tube, DO IT. It has changed our lives in so many wonderful ways, and KayTar loves her button. There has not been a single downside to this, other than the post-op discomfort which was so minor compared to the improvements we've seen in her nutrition and development.

While we were there, the doctor asked us about potty training, which I answered by laughing. Training KayTar? To do anything? KayTar trains herself when she is good and ready. She has been almost trained twice, but decided it wasn't all it was cracked up to be. When we say, "Big girls don't potty in their pants." She counters with, "But I AM a big girl and I do potty in my pants." She's going to be a lawyer, I think. The doctor laughed and said, "Oh, smart and stubborn, you've got your hands full." She tried to help me out by telling KayTar, "Do you know what would make you just PERFECT? If you pooped on the potty!" and she had the nurse try and sell it too. Before we left she asked KayTar, "What would make you just perfect?" KayTar answered, "Pooping on the potty!" She's dirtied her diaper twice since that conversation, so I'm going to go out on a limb and say it didn't convince her. She'll decide to do it one of these days, I'm sure.

****


Can you believe this tiny little football will be SEVEN tomorrow?

Neither can I!


He was just a little dude, KayTar's age, when I started this blog...it has gone by so quickly!


Now he's almost SEVEN! Unbelievable!

Tour Guide KayTar

Make video montages at www.OneTrueMedia.com

(apologies for the rerun to those of you who already saw it on FB)

Special Sunday: Bowling

The Look Before the Leap

A few nights ago, Josh and I watched an episode of Nova entitled, "Doctor's Diaries". It was the second half of a two part series that follows 7 doctors from their start in medical school 21 years ago, to their current day lives. By the end of the show, every married doctor, with the exception of one (the woman), were divorced. With that, I think the intensity of a commitment like this finally hit Josh. He is and always has been supportive of my desire to pursue a medical career (he knew I was going to go for it before I did), but I think watching that show made him realize that the difficulty of such a path won't only be felt by me, but also by our family as a whole.

We recently had a discussion about boundaries, about how we can make this work without it killing anyone emotionally or physically. It is going to be a tenuous balance, especially for the next year, largely because we will be shift parenting during the week. It was a good chat, a reminder to keep an eye on each other's emotional states as we plunge into all of this, to be willing to work extra hard when needed and compromise when necessary. I've been in school 4 nights a week before (though, I wasn't also volunteering at the time) and it was definitely manageable, but this time there is a larger push to do exceedingly well...from here on out, I'm building an application for medical school. Everything counts. Good enough isn't quite good enough. The work I put into school will have to increase. As I invest more time and effort into my coursework, I'm going to have to work even harder to utilize family time in a way that invests an equal amount of worth in our family life. Everything is about to change and maintaining an equilibrium will now have to be a conscious effort.

We've instituted something called "Special Sunday", every Sunday alternately belongs to one of the children, and we go out and do an activity as a family of BubTar or KayTar's choosing. So far, the activities have been (KayTar) IHOP, Denny's, Target to spend a gift card, and (BubTar) LEGO store, bookstore, and rollerskating. Up next is dinner at WaffleHouse, continuing KayTar's Tour of Bacon 2009. I think this little tradition will be an asset as we attempt to wade through these new waters. We're also planning to attend church again, for the first time in years. I think it is a wise investment of our family time, a good time to slow down and focus on something outside ourselves. Next year I also plan to volunteer in the kid's schools, I think investing some time and being present in their school lives is really important. I'd have done this sooner, but with KayTar's seemingly endless parade of illnesses, I just wouldn't have been able to do it consistently. We're finally getting to a place where she isn't perpetually sick, and it is a real treat. As far as Josh and I, we're both adults capable at expressing our needs and concerns which makes striking a balance much easier. I think it will be important to have weekly or bi-weekly lunch dates, so we can be in the same place at the same time and have the opportunity to exchange notes on the kids and just be together without the rush of home life.

Life is going to change and we're all anticipating it, trying to prepare somehow. The truth is, we really won't know what to expect or how to handle it until we're in the throes of it. The best we can do is be aware of the change we are about to step into and be mindful of each other as we move forward into this next stage of our lives.

Curious Incidents

Episode?

When I was in Austin a few weeks ago to testify in front of the Senate Finance Committee, I received a frightening call from KayTar's teacher. She said that KayTar was acting a little strangely, complaining of a headache, being a little withdrawn and not KayTar-like, and talking about being "spinny" (which is the big clue word for her episodes). I was four hours away from home and my heart nearly stopped as I listened to her teacher. I told her that I would have my mom come and get her, because I wasn't there to judge her condition for myself and I'd rather be safe than sorry. I called my mom, who immediately went to pick her up, and I called Josh to inform him of what was happening. In the end, it turned out to be nothing. KayTar maybe had a little headache and chose an odd time to tell her teacher about her previous episode...going to see the butterflies and getting all spinny. My stomach was just in knots, though, I've never not been with her during an episode and the thought of being far away and unable to comfort her or keep and eye on her was really unbearable.

Asthma attack?

The following Monday, right as I was about to leave to pick KayTar up from school, I received another phone call from her teacher. She said that when KayTar was in her inclusion class she started telling the teacher, "I can't breathe. I need air. I can't breathe!" So they sent her back to her regular teacher who took her to the nurse. The nurse was not there, so she called me. I went to the school immediately and found KayTar in the nurse's office with her teacher. KayTar said, "Ms. M gave me my Albuterol, but she put the blue thing (inhaler) right in my mouth (instead of using the spacer mask)!" Evidently, they couldn't locate her spacer mask. Regardless, she seemed to be breathing okay by the time I got there. When I put her into her carseat, I gave her Albuterol (through the spacer) from the med bag I keep in the car and we drove home. She seemed fine to me, but continued to tell me that when she was in Ms. G's class she couldn't breathe. I'm not sure what happened or why, but it was a little unsettling...especially the fact that the nurse wasn't present and her medications weren't easily accessed. What if she has an allergic reaction and needs her Epipen and the nurse is off-campus? Yikes.

Reflux!

A few weeks ago I mentioned that we thought KayTar's lifelong history of nighttime vomiting and asthma exacerbations might be tied to reflux. We were unable to give her the solutabs because they clog her g-button, but we were able to get it specially compounded into a liquid, thanks to our magical pharmacist. We started her on it three weeks ago and (knock on wood) have NOT had any nighttime vomiting or asthma problems, even with this latest illness. She may have had not-so-silent silent reflux for years! She never indicated any sort of reflux pain, so it wasn't on our radar. It all seemed cough-mediated and she has always had quite the reputation as a puker. This new trend of NOT cleaning up vomit at least once a week has been kind of wonderful. I wish we had figured it out all those years ago!

Wordless Wednesday: Freckles

Sometimes I hate thinking of titles.

I'm back to firing on all cylinders, but little KayTar is home sick for the second day in a row. She has been so healthy for so long (at least in KayTar terms) that I don't mind much at all. Of course I wish she was healthy and able to attend school with her friends, but this illness doesn't have that draining feeling of sick again attached to it, which I very much appreciate. The illness itself is not such a big deal, fever since Saturday, cough, congestion...a basic URI. I did take her to the pediatrician yesterday for a nasal swab to rule out flu (in case that is what I had and passed it along to her), but it was happily negative. I would have felt really bad if she got the flu shot and the flu...doesn't seem fair!


Easter was nice enough. Josh and I took shifts for the festivities. He took BubTar to his brother's house for lunch and an egg hunt, then I took BubTar to my parent's house for egg coloring, dinner, and another egg hunt. Even though she didn't get to participate, everyone sent goodies home for KayTar. She was pleased as punch and didn't seem to mind spending the day resting at home.


We're having a lazy sort of day, which seems to be just what the doctor ordered. Between school and speeches and sicknesses, our weeks have been pretty busy and a laid back day to play catch up was needed. I'm sure if it happens again tomorrow I'll be climbing the walls, but for today it is a nice little break. A little laundry, a little studying, a little snuggling, a little cleaning, a little playing...a little bit of a lot of things.

Sick, sick, sick.

Man, have I been sick! It started Wednesday night, I went to be feeling a little more tired than usual, that aching kind of tired, but I slept well enough. In the morning, I had a low grade fever and body aches. It was still manageable with a little ibuprofen and coffee, though. By Thursday evening, I was in pain and my fever was rising, so once the kids were in bed, so was I. I shivered and shook all night, terrible muscle and joint aches, a massive headache, night sweats and chills. It was awful. When Josh's alarm when off on Friday morning I asked him to take the day off (which I don't think I've ever done). He stayed home and took care of the kids and I spent the entire day in an unconscious, feverish haze. I was really incapacitated and I can't remember the last time I was this kind of sick. I lost an entire day! By Saturday, I finally felt well enough to get out of bed for small periods of time and this morning I feel ALMOST back to normal. Whatever it was, I do not recommend trying it! I really had no other symptoms, no runny nose or congestion, no cough, no GI symptoms, no sore throat...just the fever and pain. I'd take a round of strep over that any day.

Of course, KayTar started running fever yesterday, so I'm really hoping that if it is the same thing, it doesn't hit her as hard as it hit me. It was rough! She and I will be sitting out of the Easter festivities today, but the boys will bring up lots of goodies to ease our pain.

Hope you are all having a very happy (and healthy) Easter today!

It's nothing...and that's okay.

The neurologist called me with the anticipated results today. Evidently, KayTar has more mitochondria in her cells than is typical, which may point to mitochondrial dysfunction (mitochondria are the energy factories of the cells. if your factories aren't able to produce enough to keep up with demand, what do you do? build more factories!) but doesn't mean much diagnostically speaking. The neurologist is ordering further tests on the muscle biopsy, so once again we'll wait and hope for answers, knowing they probably won't be found.

2nd verse 686th verse, same as the first.

After we received KayTar's muscle biopsy results, we had to order more tests to determine if KayTar actually does have a mitochondrial disease or whether the pathologist likes to read a little too much into subtle abnormalities. Well, the results are in.

Last night, our pediatrician called me and read the newest report to me, though, I still know next to nothing as I'm not an expert in these tests, nor is she. It is all blah-blah citric acid cycle blah-blah type II muscle fibers blah-blah mitochondrial dysfunction blah-blah-BLAH. I'm waiting for the neurologist's clinic to open, so I can call and get an official interpretation.

I didn't sleep well last night. I woke up nearly every hour and laid awake, "Will we know tomorrow? No, you know that even if it is abnormal, it won't be clear cut. But what if? What if this is it?" And shockingly, "What if the news is bad and after hearing it, we wish we could go back to this moment, to this existence of not knowing?" I don't think I've ever wondered that before.

In the past, instead of lying awake in bed all night I would have sat in front of my computer, releasing the words that churned inside my belly onto the freedom of the screen. Last night I realized I don't have anything new to say. This singular experience is a microcosm of our lives and of this blog, the history we seem doomed to repeat endlessly, waiting for answers that do not come. And yet, after nearly three years of waiting, I cannot resist the siren song of hope. She has had countless tests and not a single one has given a conclusive result, and I still cannot will myself to unclench my fist and release the need for an answer. This ceaseless, uncontrollable hope is a sickness and it can only be cured by first finding a diagnosis...for her.

Now with more fillers!

Do you ever think, "Man, I haven't blogged in a few days. I should at least post some photos."

Then, you visit your own blog and think, "Crap, I already used that one this week."












Oh well.

Wordless Wednesday: Smile if you're insured!