Sick, sick, sick.

KayTar is quite sick. Yesterday she was playing in her room and shouted to me, "Mom! I'm having energy problems! I need my Pediasure!" so I sprinted up the stairs with her cup in hand, laid her in her bed and told her to drink and listen to the radio. I came back down stairs and listened over the monitor. It was silent. I ran back up to check on her and said, "Are you okay? Do you feel weird? Spinny? Are your eyes okay?" I'm thinking "Oh shit, I jinxed her into an episode. Perfect." She said, "I feel weird. Throw up weird." UH-OH. I sprinted to the kitchen for a pan and said, "Please, PLEASE, don't throw up until I get back!" When I got back, she wanted to come downstairs to rest in her baby chair and as soon as we got to the living room, she puked a ton...into the pot, thankfully. I gave Zofran pretty soon after and she had a decent day of intake for being sick. 12 ounces of Pedialyte after the Zofran and a handful of Saltines. She peed twice.

This morning, though, she was feeling worse, shaky and hot, dizzy, unable to stand or walk. I checked her glucose, because the last time we were in the hospital, she had these same symptoms. It was 53, which isn't normal, but it isn't crazy low...like when it has been in the 30's at the hospital. I gave her a 4 ounce bolus of Pedialyte to try and bring it up, but she wouldn't let me give her any more. She said it was making her feel sick, and I figure that keeping 4 ounces IN is better than more than 4 ounces coming right back OUT. She is still so lethargic, though, I rechecked her glucose (64) not long ago and she didn't even wake for the poke. Poor babe. I hope we avoid the hospital, but even MORE than that, I really hope we avoid an episode. When she gets like this it makes me so nervous that one is lurking right around the corner, waiting to pounce on our sick and vulnerable girl.



ETA: Her glucose is up to 85, she finally peed, and I've gotten in three 4 ounce Pedialyte/Pediasure feeds into her over the course of the day. Looks like we have narrowly escaped a trip to the ER! Here's hoping she is on the upside of this thing!

Then/Now

We went to Space Center this week and when I got home and looked through the photos, I realized I had similar shots of BubTar from 2 years ago, almost to the day. I can't believe how much he has grown!

8 months! (knock on wood)

Today marks EIGHT MONTHS since KayTar's last episode.

EIGHT!MONTHS!
(knock on wood)

It is amazing, miraculous, wonderful. They used to torment her every TWO WEEKS. She would have had 16 in this time frame, instead she has had zero. We never thought they would stop.

I still think that the trigger is nutritional/metabolic in nature, that something isn't functioning quite right in the intricate processes of catabolism and anabolism, and that her steady intake of Pediasure is responsible for many of the positive changes we've seen in her health and development, including the decrease in episodes. The last time she was very sick, we took her to the hospital to correct her hypoglycemia and fluid imbalance sooner than we have in the past and I think that kept her from having an episode in a situation when she typically would have. Regardless of the reasons, I'm just glad they have been absent for so long and hope they continue to stay far away from our girl.

This year it is easy to get all of her Pediasures in. Every morning she gets 4 ounces of Pediasure via her g-tube before school, then we send her to school with 8 ounces in a sippy cup. She drinks it during breakfast and snack time at school and when she gets home, she finishes whatever is left and I make her a second cup. We try to get in one more in the evening. Usually by bedtime she has had 2.5-3.5 cans of Pediasure each day, along with food. Next year, in full day Kinder, we aren't sure how we will accomplish the same level of intake. It takes MANY, MANY reminders to get her to drink her Pediasure. If things are busy, she gets distracted. We tube feed her when she doesn't feel like drinking it by mouth. Next year in Kindergarten, she will be busy all the time and be in school full day and it will be a different ballgame. We don't know if she will need to go to the nurse for a full tube feeding at midday or if we need to invest in a pump for her to wear during the day to give her steady amounts of Pediasure throughout the day. We'll figure it out, I'm sure.

We're just glad to know exactly how important it is to her overall well-being, and thankful for her g-tube and the ability it gives us to ensure that she gets what she needs every day. Most of all, we're thankful for EIGHT whole months of peace for our sweet girl...she sure deserves it.

Look! We made it outdoors!

After my previous post, I realized just how frantic life had been lately and made a conscious decision to force a little more LIVING into our days.

Wednesday, KayTar returned to school, I studied while she was gone, then took her out to lunch after school and then we went on a walk together. I also made it a point to spend an entire hour on the sofa with my novel. The weather has been amazing this week, so after school the kids spent some time on the trampoline.

Thursday was very low key, I had been nursing a headache all week and it nearly took me out of commission on Thursday. I managed to do laundry, clean the house, and go through my index cards several times, though. We went outside after school to play with the MoonSand that KayTar got for Christmas. I finally cured my headache with a glass of orange juice of all things! I gave up sodas over a week ago and I guess my body did not agree with the sudden lack of sugars. After fighting that headache for a week in spite of a variety of medications, it was gone with a single glass of orange juice!

Today (Friday), I spent the morning studying, but when KayTar got out of school we went to pick up lunch and ate with BubTar at school, now I'm blogging while KayTar plays Club Penguin, and after BubTar gets out of school we're going to Barnes and Noble for new books and BubTar might be having his best buddy sleepover, too. I'll study while they entertain each other. Saturday night, we are thinking of having friends over for a game night.

So yes, I had a double length Chem class on Wednesday night. Yes, I have a lecture exam in Bio II tomorrow and then a full day's worth of class. Yes, I have a study session for Chem on Sunday. Yes, Chem will be double length again on Monday, followed by an exam on Wednesday. But it doesn't matter how busy life gets...there is always time to fit in some of the fun stuff, too, sometimes it just takes more of a conscious effort to squeeze it in!

Life? What life?

Here's a peek at what I've been up to for the past couple of weeks...

Monday, February 15th:
KayTar has her first sick visit at the pediatrician's office in months AND ends up in the ER.
Miss Chem II.
Miss volunteer shift.

Tuesday-Thursday, February 16-18th:
KayTar is home sick, preempting all studying and party planning goals.

Friday-Saturday, February 19-20th:
Insane party prep!

Sunday, February 21st:
The party!
Collapse into heap.

Monday, February 22nd:
Cram for a Chem II exam.
Cupcake delivery to KayTar's school.
KayTar's birthday lunch.
More cramming.
Chem II exam.
Blue and Gold Party for Cub Scouts (BubTar got a TON of awards!).
Volunteer at the hospital from 10pm-12am.

Tuesday, February 23rd:
Nap.
Mourn over my Chem exam.
Read a novel.
Laundry.
Lazy.

Wednesday, February 24th:
Special Olympics Young Athletes' Day with KayTar.
Pediatrician appointment for BubTar.
Meet up with Josh briefly to pass off BubTar.
Eat in car.
Chem II.
Get Chem II grade, a miraculous 84.
Kick myself for DUMB mistake that cost me my A.

Thursday, February 25th:
Somehow I can't remember a THING about this day. Perhaps I was in a coma? I think there might have been grocery shopping...not entirely sure.

Friday, February 26th:
KayTar spikes a fever that rapidly progressed to a HIGH fever.
Biology II SI session.
Cram for Bio II lab exam.
Sleepless night with sick and HOT KayTar, fever got up to 103.9.

Saturday, February 27th:
Skip Bio II lecture to take KayTar to the pediatrician.
Drop KayTar at my mom's. (the boys were at a scout class)
Barely make it to Bio II in time for the lab exam.
Nurse a sick KayTar.

Sunday, February 28th:
Sick KayTar.
Laundry.
Trip to Target for boxers for BubTar and a bathmat. Sadly exciting as I hadn't been out of the house except for school or the pediatrician for quite sometime.
Relax.
Dinner with my parents.

Monday, March 1st:
Sick KayTar.
Make brightly colored index cards for Bio II.
Chem II.
Volunteer at the hospital from 10pm-12am.

Tuesday, March 2nd:
Sick KayTar.
Study.
Sort clothes for Spring.

Over the next week or so, I have a two DOUBLE-LENGTH Chem II classes, Bio II SI, Bio II lecture exam, Chem II study session, Chem II lecture exam, and the start of another course...just to hit a few of the highlights. Thankfully, Spring Break is just around the corner. I'm going to need it!

More on the big birthday!

A couple of months ago, Josh and I started discussing how we were going to celebrate KayTar's birthday this year. Five is a milestone birthday, after all. She has been asking for a surprise party since she was 3 going on 4, so we started toying with that idea...who would we invite, how would we pull it off, so on and so forth...and after all of that hypothesizing, we were completely in love with the idea! We invited all of her special people; family, our pediatrician, her teacher, her speech therapist, her best friends from school and other places, and some friends she really loves but hasn't been able to see in a while. We have a rather small house, so we planned to have activities outside for the kids...but the weather had other plans which left us scrambling to make indoor room at the last minute. We had a great showing! Of course, a couple of people couldn't make it due to illness or other plans, but overall, it was AWESOME. I think there were 13 kids and 15 adults, which is quite a group for our little house. KayTar had everything she wanted because she was hypothetically planning her party aloud for WEEKS and I was busily taking notes.

It was SO tricky to pull off. You'd think that surprising a nearly 5 year old would be a piece of cake, but not KayTar. I emailed her teacher to find out if any of the friends we were inviting came from Spanish-only homes, so I could invite them properly and she replied that one of them, Ix, did come from a Spanish-only home. The next day KayTar says to me, "Did you know Ix's parents speak Spanish?" I said, "Yes, I did. How do you know that?" She replied, "My teacher said it!" I asked, "Really? When?" KayTar replied, "IN YOUR EMAIL!" I almost DIED! The kid was reading my email, where all the Evite RSVPs were and discussions of parties and whatnot. Oh my! We started speaking in code after that, using terms like "library reading session" or "seminar" instead of party.

Then when I sent the secret invitations to school for her friends, I put them in an opaque envelope with her teacher's name on it. When KayTar was putting her backpack away that day, she OPENED the envelope and read her friends' names off of the invitations. She asked her teacher what they were for, who said (God bless her) that they were secret invitations to the school Valentine's party. WHEW! I had just pulled back into the driveway from drop off when I got a call from her teacher, she led with, "If you pull this party off, it will be a MIRACLE!" and then she told me the invitation story.

Finally, the day before the party, my mom called and said, "What do you want me to bring to the party?" And what did we hear in the receiver? KayTar on another phone in the house, "What party?" AGH! Josh quickly collected all of the extra phones in the house and we told her it was for the Cub Scouts Blue and Gold party. We got really lucky that this is a big party time of year!

In the end, she WAS surprised and it was worth every ounce of effort. She was so thrilled to see all of her special people there and it was a priceless moment. It was a wonderful way to celebrate our big five year old, who has come so far, so fast, that it almost seems unbelievable. We are so proud of the child she has become; outgoing, hilarious, intelligent, and beautiful. I can hardly believe that my once slumpy BABY KayTar is now FIVE.


She requested that the birthday banners stay up for 16 days, but now she has changed her mind to 30. She wants to milk this birthday for all it is worth!
KayTar TV! Our cable lets us play slide shows of photos from Flickr.
Brain cupcakes, as requested.
The reaction! She was just about to start jumping up and down here.

We had everyone sign a big photo mat for her, so we can put it in the frame with a photo from her party and hang it in her bedroom.
Most of Josh's family was MIA, but his mom called to tell KayTar "Happy birthday!" during the party. KayTar told her, "One of those gifts BETTER be my Snow White cleaning set!" LOL! It was, but it happened to be from my mom.
She tore through her gifts at warp speed. In fact I'm STILL not sure who a couple of the gifts came from!
She needed a little helping aiming to get those candles blown out!
PINATA! Somehow the ones we buy are always defective and the men have to forcefully rip it open for the kids.

The kids seemed to have a great time, a few of them even sobbed when it was finally time to go, and the adults were able to sit and have conversations while the kids entertained themselves in the kids' rooms. I think overall it was a big success, but regardless of that, we surprised the heck out of KayTar, and that was what really mattered. She told us, "I thought I was just coming to my sweet home like normal, but it WASN'T!" She is still basking in the glow of her party and that makes all of the extra work to keep things secret worthwhile!

KayTar is FIVE!

Yesterday we threw her a big surprise party and invited all of her special people. It was SO tricky to pull off (more on that later), but more than worth it! I mean, check out her reaction! (I know a lot of people don't bother to watch videos on blogs, but this one is really worth your time, I think!)

Make video montages at www.OneTrueMedia.com

I'll write more about all of this later, but I have to get back to cramming for my chemistry exam! Studying has taken a backseat to party planning lately and it'll be a small miracle if I manage to absorb anything today.

Wordless Wednesday: Goodbye Cruel World!

Imagine that you come home from school, and go upstairs to check on your sleeping children. You step out of their bedroom and into the hall, and out of the corner of your eye you catch a glimpse of two small legs, hovering in the air horizontally. You turn to get a better look and...



Then you nearly pass out from laughing so hard.

Just like old times...

KayTar and I spent the day in the hospital. Yes, after not a SINGLE visit to the pediatrician since the summer, today we knocked out a pediatrician's appointment and a brief hospital stay. Overachievement is in our nature.

She was sick a couple of weeks ago, minor respiratory crud that we didn't even see the pediatrician for. She missed a week of school, but got over it on her own. She was healthy for a week and then on Saturday, she started sounding pretty rough again and by nightfall she had vomited and spiked a fever. In the night, she started wheezing and although the albuterol helped, she needed it every 2-3 hours to keep the wheezing under control. Sunday she was pretty sick, but we managed to stay out of the ER. In the evening, though, she threw up her bolus feeding and her meds. Before her pediatrician's visit this morning, she threw up her entire feed and then threw up again. And again. AND AGAIN. andagainandagainandagain. The pediatrician listened to her and she didn't sound too bad, but she wanted a chest x-ray because she was satting at 93% and a chemistry panel to check her for dehydration since she hadn't urinated since 6 the prior evening. We went to the hospital and though her chest x-ray was clear, she was wheezing a bit and her glucose level was circling the drain at 39. She was dizzy and lethargic and just NOT her chatty self. Over several hours, they gave her zofran, solumedrol, and glucose...as well as maintenance fluids. Once her numbers came back up and she perked up, she kept down 1/2 a popsicle and a few sips of Sprite...and we were on our way home! It was a long day, but I'm so glad we didn't have to stay overnight. She has to take 4 days of steroids, and I think the IV fluids and zofran will give us plenty of space to keep her hydrated and she should be doing much better soon. Fingers crossed!

TBS would rate this as "Very funny."

For cub scouts on Monday, Josh asked his pack to bring in a collection to show the rest of the group. KayTar goes to scouts with the boys, because I have class, so she is part of the pack, too. She brought her Disney Princess doll collection to show.

Josh wanted the kids to talk about their collections, so he prompted them with questions during their presentation. He asked KayTar, "What do you like about your dolls, KayTar?"

She replied, "Well, I like their hair and the color of their dresses...and that they have B00BS..."

Josh nearly DIED when she said that in front of that room full of 7 year old boys and their parents!

There is never a dull moment when KayTar is around!

What we've been up to...

Our semester started two weeks ago and since then we've been pretty busy getting our new routine down! On Monday and Wednesday evenings, I have Chem II. On Tuesday and Thursday evenings, Josh has Unity of Life (biology I for non-science majors). On Saturday, I have Biology II from 8am-3:30pm...which means 7:30-4, when including drive time. Not to mention scouts on Monday night, along with my volunteer shift at the hospital, and my SI sessions for my classes that both happen to fall on Fridays. As busy as it is, I'm enjoying the new schedule because I get to spend two nights a week with the kids. They are pretty excited to have me around, too.

Three weekends ago, we went to an Aeros hockey game which was so much fun! Two weekends ago, we went to the symphony to see the Planets an HD Odyssey. They played Gustav Holst's music and showed HD video of each of the planets that accompanied the pieces. We really enjoyed it, especially BubTar, and it was fun to get dressed up and go into the city together. Last weekend, we had a tour of a local fire station with the scouts. That was pretty neat and MAN, does that KayTar like to talk. I think she raised her hand upwards of 50 times during that tour. She just couldn't help herself. This weekend we are going to the zoo for a scout class for BubTar and KayTar and I are going to tackle the portion of the zoo we didn't see last time.

KayTar's birthday is coming up soon and we are SO excited. We have decided to throw her a surprise party and we think she is just going to FLIP out. We invited all of her favorite people, even her pediatrician and teachers at school, and I can't wait to see her reaction! With all the busyness, though, finding time to prep things is almost impossible. I think we only have one free weekend before her party and who knows if it will even stay that way. The only free weekend that we had between now and then is now dedicated to a cub scout camping trip! OF COURSE! She is home sick today, but once she is back in class I'm going to have to start using her class time to get started on all of that!

Photos from the hockey game...




Photos from the symphony...




A picture KayTar drew of she and I holding hands...


Out to dinner...


At the fire station...


Someone lost ANOTHER tooth yesterday. That makes 3 total and she is not yet 5!


That's all for now!

Wordless Wednesday: Before the Symphony

BubTar and the Cheerleaders

Sorry for the radio silence, Josh and I started back to school this week AND I'm sick (No, not THAT kind of sick! I know what you're thinking.) There is nothing and everything going on around here, but not much to say about it! However, I do have a little gem of a BubTar story...

Last weekend, we went to a local professional hockey game because he was the top popcorn seller in our cub scout district and he had the opportunity to go out on the ice. Let me tell you, hockey is something else! Oh my. 3 fights in the first 10 minutes, but it sure was a fun sport to watch. Even Josh, who hates every sport on the planet, would like to go again! After the game, BubTar got to go out on the ice, but they wouldn't let Josh or I out with him. The poor kid was confused and we were trying to give him directions from the other side of the plexiglass and he couldn't hear us no matter how loud we spoke or how dramatically we gesticulated. The cheerleaders were in the penalty box right next to us and saw our predicament, asked us his name, and then pulled him into the booth so I could take a photo. He was like an adorable little deer in the headlights. He stood way far away from them, perhaps due to a fear of contracting a case of The Cooties, so they scooted closer to him so I could get a shot.

On the way home he said, "Mom, you know that first picture you took?" I said, "The one with the pretty ladies?" He grunted, "Yeah. That one. PROMISE me you'll never show my friends that one! It is soooo embarrassing!"


Somehow, I think he MIGHT feel a little bit different about this picture in a few years. Haha!

I took a nap.

So in the absence of the horrifying excitement of previous eras of our lives (an absence we hope to continue, knock on wood), I find myself at a loss for writing material. Sure, there are plenty of bright and shiny things to talk about...but not much to write about these days. I don't have much need to utilize writing as as a form of self-expression or as an art form currently, which is definitely messing with my blogging mojo. I'm testing a new tactic, one which fully embraces the dullness of everyday life, thus the title, "I took a nap." What a hook! Riveting! Exciting! What in the world might I be about to discuss?! You're on the edge of your seat, aren't you? You've got a white knuckled grasp of your mouse...you can't WAIT nudge that scrolling wheel and read what is sure to be a literary MASTERPIECE! Well, wait no more!

The first day back to real life was a bitch, I'd use a nicer word for it but I don't think there is one. (Brief side bar: Anytime I use curse words, I hear Josh in my head saying, "Ooooh, potty mouth." For real, he does this. Every time. Usually I'm highly frustrated when I curse and this always take the blustery wind out of my sails, but it also has the side effect of making me laugh...so I don't really mind. Plus, HE said a curse word the other day, which never happens, so I gave him a standing ovation...then tossed the potty mouth remark back at him. HA!) 6am wake up after a week of sleeping until after 10am? NO FUN. Though, I highly recommend the sleeping in for a week part. Then, to add insult to injury, not only did I have to wake up at 6am, I didn't even get to lounge in bed with my coffee, netbook, and old episodes of Dawson's Creek! I had to get OUT OF BED and DO THINGS in the morning. Ugh. It was painful. The day was long, and made longer by my volunteer shift at the hospital. I fell into bed around 1:30am. When the alarm went off at 6am the next day, you can imagine my displeasure. 4.5 hours of sleep! Like Ariel sings in that song I hear 75 times every day, "I want moooooore!" Bet you'll never guess what I did after dropping the kids off at school?

I TOOK A NAP!

Whoa, how did you guess that? You're good!

Anyway, it was a GLORIOUS nap. I got home from dropping them off at 8am, and I stripped off my clothes, pulled on a night shirt, and crawled back into the warm bundle of covers. The sheets were soft and smooth and the temperature in the room was just slightly chilled which made my place nestled underneath the comforter and quilt the precise level of needed warmth. I adjusted my alarm, closed my eyes, and fell into dreamland straightaway. I slept until 10:23...exactly enough time for me to pull on my jeans and jacket and get back to the school to pick up KayTar. I'm sure I had pillow creases on my face and all, but who cares? I TOOK A NAP!

The rest of the day was so-so...pick-up duty, laundry, tea parties, doing a puzzle, having my parents over for dinner...you know, the usual. However, that nap...it was pure brilliance.

Stayed tuned for my next installment of the everyday life series. What might it be? "I ate a yogurt!" or perhaps, "I bought a pair of pants."

The anticipation is KILLING ME!

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.