Thursday, April 30, 2009

The labs showed...

Nothing. Of course!

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



Wednesday, April 29, 2009

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.


Tuesday, April 28, 2009

This is what they mean by hypermobile joints...



And nope, it isn't a fluke.


Monday, April 27, 2009

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







Wednesday, April 22, 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!

Tuesday, April 21, 2009

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!

Monday, April 20, 2009

Tour Guide KayTar


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

Sunday, April 19, 2009

Special Sunday: Bowling







Friday, April 17, 2009

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.

Thursday, April 16, 2009

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!

Wednesday, April 15, 2009

Wordless Wednesday: Freckles

Tuesday, April 14, 2009

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.

Sunday, April 12, 2009

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!

Tuesday, April 07, 2009

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.

Sunday, April 05, 2009

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.

Wednesday, April 01, 2009