Wednesday, December 31, 2008

Wordless Wednesday: Sleeping Beauty

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Tuesday, December 30, 2008

2008: Whew, glad THAT is over.

I did this last year, too, and it was convenient to read through the entire year in a couple of minutes. I had high hopes for 2008, (NO HOSPITALIZATIONS!) but that didn't quite work out. 2009 can do what it wants, I'm not tempting fate this time around, thankyouverymuch. 2008 was wild; loss of insurance, surgeries, hospitalization, being on television and in a magazine and the newspapers, giving speeches...absolutely none of it was expected when the clock struck midnight on January 1st, not to mention the usual schedule of illnesses, tests, and doctors. It was good and bad and in between, but we survived it. KayTar has developed in leaps and bounds all year, her former self nearly unrecognizable to us now. This was the year she left her babyhood behind...everything but the diapers, that is.


BubTar started the year vomiting.
She had an episode in the airport on New Year's Day.
I got searched at the airport, and BubTar spiked a fever.
The first week of 2008 is terrible, BubTar and KayTar both are sick before it is over.
KayTar wouldn't drink. Two weeks in and we're on the dehydration teeter-totter.
I went back to school.
She puked in her new bed, a KayTar christening! I talked about possibly weaning her from the bottle. Silly me.
I worried about things, the district transition and weaning from the bottle.
KayTar stopped eating.
We increased her Pediasure and decided to stop fighting with her to JUST EAT PLEASE!
The not eating thing? It really, really ate at me.
The pediatrician brought up the feeding tube for the first time. I was totally freaking out. (I should have just said, "YES PLEASE! FEEDING TUBE!" Hindsight is 20/20.)
She kind of related an experience to me.
She had her first district evaluation!


BubTar though speech therapy involved a stage and a podium.
KayTar lack of empathy created some sibling issues.
I investigated KayTar's level of comprehension. (all of these verbal development posts are so fascinating to me in retrospect, I've forgotten what a rough ride it was for her to acquire her speech skills!)
We found a compounding pharmacy! I fell in love! (If you have a kid with sensory issues or oral defensiveness, FIND ONE!)
We discovered that she was probably uninsurable.
We lost another option for insurance.
She turned THREE!
We almost made it through February without illness, but KayTar picked up a souvenir from her well-check.

She saw genetics, neurology, ophthalmology, and the pediatrician before losing her insurance.
She had part one of her autism evaluation. She is weird!
She went 73 days without an episode and then had one during part two of her autism evaluation.
We celebrated a full year of walking!
She was, as she always is, content even though she couldn't run and play like the others.
BubTar spent his first weekend away from home.

We missed her feeding clinic appointment because she was uninsured.
She ate some baby food and I was thrilled.
She had trouble understanding other people's emotions.
BubTar had a double ear infection! Poor guy!
I got the unofficial report on KayTar's district evaluation.
BubTar turned SIX!
She had an episode. On BubTar's birthday, no less.
I gave a speech at our state Capitol.
I was in the newspapers!

We had the official meeting about KayTar's district evaluation.
BubTar captured a video of KayTar's eyes doing that weird thing.
KayTar got her glasses!
We were able to get KayTar plugged into some great programs.
Josh and I had our seventh wedding anniversary.
KayTar gave up the Pediasure (temporarily).
We had her ARD meeting.
KayTar went through a rough patch behaviorally and it was hard to handle.
I wrote about blogging, about the Just Posts, and about what it all meant to me. I love this post.
BubTar graduated from Kindergarten!
I got a phone call from SELF Magazine...they were going to fly us to NYC!

We prepared for our trip to NYC.
The flight went well.
The photo shoot went well.
We found out the kids would be insured soon!
I wrote a round up post of our trip to NYC.
KayTar loved her arts camp this summer and told me all about it!
Her first recital was adorable.
KayTar judged me for wearing track pants in public. This still makes me laugh.
I wrote about KayTar's developmental progress. She really hit her stride this summer in many ways.
I used to be friends with ghosts. I love this post, too. If you haven't read it, you should.


KayTar really impressed me with her word games. It was a leap in both understanding and communication.
KayTar hadn't had an episode in 75 days and I didn't know what to do with myself. Literally.
I got stuck in Atlanta on my way to make a speech in Washington DC. This still pains me!
I relished in the new found level of communication I had with KayTar, my once unknowable girl.
KayTar impressed me with her art skills.
BubTar got stitches! His first ER visit ever!
I made myself read that post that still turns my stomach, the one about the ALMOST diagnosis. I made peace with it and realized that the diagnosis doesn't matter in the end, the only thing that matters is that she is thriving. And she is.
She had an episode after 95 DAYS without one!
She had a weird residual pseudo-episode.
KayTar was sick and I showed off my handwriting.
She had her third episode in 5 days. It was sad and exhausting. We went to the hospital shortly after this post.

We came home from the hospital on my birthday. I turned 25!
The long version of our trip to the hospital.
She never looks sick, not even when she is in the hospital. (except for last week, evidently)
KayTar sang a solo at her camp recital.
A cup of coffee at a diner made me realize I was a grown up.
KayTar and her sick seat, through the years.
I wrote about how similar BubTar and I can be.
Our magazine article came out!
An updated rundown of KayTar's various KayTarosities. (I need to do a new one now that she's tubed and profoundly deaf in one ear.)
BubTar got sick right after school started, thanks to our GENIUS trip to the Children's Museum on the last day of summer. This post cracks me up.
It was my two year blogiversary, and I looked back at my very first post.
KayTar missed her first two days of school because she was sick. We had the Tube Talk with the feeding specialist and subsequently our pediatrician. It was effective, as we were playing Dehydration Roulette once again.
She finally started school!
I talked more about the possibility of a feeding tube. (I was so cute and worried and I just want to shake myself and shout JUST DO IT! IT WILL BE THE BEST DECISION YOU EVER MAKE!)

KayTar needed blood work done to check her kidneys after prolonged dehydration and she had an episode.
We found out her hearing loss was progressing.
BubTar got sick and I lamented KayTar's poor intake.
KayTar got sick.
Hurricane Ike! Big fun!
We came home after 13 days of being with my parents.
KayTar had a repeated hearing test.
I met with the surgeon about KayTar's g-button. I was still agonizing over it. (Oh Kyla, love, it will be wonderful. Just you wait.)
KayTar said princesses don't have glasses or hearing aids. I think they do and should, at least occasionally.

We had a BIG appointment with the ENT.
KayTar learned how to win an argument. Whatever.
We added a muscle biopsy to the surgical schedule at the request of the Internets.
I wrote a letter to Joe the Plumber. I'm glad we won't be hearing anymore about him.
I had a TV crew in my living room.
KayTar got her first report card.
I posted a picture of KayTar's pre-button belly.

I started NabloPoMo. KayTar was in pre-op quarantine.
I wrote a post to KayTar's bottle. I love this post. A lot.
We prepped for the hospital.
KayTar had surgery! Obama won!
She smiled her first post-op smile.
She had her first tube feed.
We came home from the hospital!
She drew the saddest self-portrait ever.
KayTar introduced you to her tube.
I fed her in her sleep! MIRACULOUS!
Want to know about feeding disorders? Read this post.
KayTar pukes a lot, if you didn't know.
Josh and I were sleeping in separate beds. (as we are again)
I showed you my work space and KayTar had a MRSA infection at her biopsy site.
I dreamed of having a baby.

We find out the kids are likely going to lose their insurance. Again.
KayTar's stoma site starts growing some granulation tissue, also known as The Dude.
It snowed!
Good things happened.
KayTar had a crazy allergic reaction.
KayTar couldn't breathe. I have never been more scared.
She was very, very sick.
She got into the peanut butter (which we thought she was allergic to) and didn't react. HOORAY!
Her MRSA infection came back.

Fun facts:

She only had 7 episodes this year! Can you believe it? She had 13 in 2007, so this was a vast improvement.

She now weighs 32 pounds, thanks to her g-button!

Sunday, December 28, 2008

At least it is festive!

A couple of days before Thanksgiving (November 23rd), KayTar's biopsy site started to get inflamed. The scar is shaped a bit like a needle, the length of it is a straight line, but the end has had a harder time healing and resembles more of a loop, like the eye of a needle. That little loop is what had started to look inflamed. I sent a photo to the pediatrician (it is like she has her very own subscription to Disgusting Photos Weekly with KayTar as a patient), who recommended topical antibiotics because at that time, it was just the beginning of a surface infection in one small area. By the evening of the 25th, there was a small, spreading warm red area coming from the length of the scar. I sent more photos and we went in for an appointment the next day. She took a culture and started KayTar on Bactrim for the cellulitis and continued the topical antibiotic for the abscess. By that evening, the cellulitis area had more than doubled in size, extending jaggedly from the biopsy site. We were put on ER watch, if it didn't stop spreading within 24 hours of the start of the oral antibiotics we were to go in, and we watched it carefully on Thanksgiving Day. It did stop spreading, and eventually it retreated, though when looking at her leg I can still tell where the worst of it was because the tissue has a slightly different hue. A week or so later, the culture came back and it was MRSA, which was what it was suspected to be. Before her surgery, she had folliculitis on her wee bottom, and although we had treated it and cleared it up before the surgery, the pediatrician thought a bit of that colony had migrated over to the leg and found a nice new home, marched right in through the opening and set up camp in her thigh.

On Christmas, I noticed that the small opening of the scar (the origin of the initial infection) had scabbed over, which was odd because after the MRSA infection, it healed nicely and there was no scabbing. The next day, there was fresh redness surrounding the little scab, I started applying the topical antibiotic again. By yesterday, it was getting a bit puffy around the edges and oozing blood. (Nice visual, right? You're welcome.) I sent the pediatrician a photo (see, Disgusting Photo Weekly) and she said to continue the topical and add in another round of oral antibiotics, so we started those last night. She said that staph tends to reoccur in the same area at the slightest irritation and we might do this a few times before it finally clears up for good. Dandy! Hopefully this time we started treating it early enough so that we don't get to the spreading cellulitis stage, because it was a wee bit unsettling, waiting for the medication to turn the tide in her tiny little leg. (Fun fact, the week she had the initial MRSA infection I had just had an exam over bacteria and 7 full index cards were dedicated to is one nasty little pathogen. The one thing I did not learn about staph in that course was just how much it enjoyed spending the holidays at our house!)

Here is a little public service announcement: Never email your pediatrician and jokingly say, "Merry Christmas! Hopefully I won't have to bother you until the new year!" Because then on Christmas Day your child will get into the peanut butter she is possibly allergic to, prompting you to email her (though, you might wait until the day AFTER Christmas to send this, to be kind), and the following day your child's MRSA infection will recur, prompting you to send yet ANOTHER email, complete with disgusting photo. We sure are lucky she loves us.

Children in festive clothing; totally irresistible to staph. Who knew?

Friday, December 26, 2008

Well, I got what I wanted...

KayTar was healthy and happy, and we were all able to enjoy all of the festivities together! The kids got what they wanted, too, as you can see.

From Mr. SC (as BubTar addressed his letter), KayTar got a set of the Disney Princesses and a dress up trunk and BubTar got a camcorder (small, but at 30 fps it is actual video quality!) and a little mp3 player. From family, they got way too much...our house is covered in pink and purple and glitter, princesses and dresses and Barbies all around...and on the flip side, the floors are covered with Legos and Star Wars and Transformers. I love Christmas day, the work is done, everyone is pleased, and a hush of new toy joy falls over the house that is pierced only by squeals of delight. Lovely.

Yesterday evening, Josh ran an errand and while he was gone I was watching the kids and doing laundry, taking trips to the garage to start and change the loads and trips to the bedroom to lay out the clean ones. Josh arrived home and called my attention to something. KayTar. WITH THE PEANUT BUTTER JAR.

Since the Swelling Incident, I've been ridiculously careful about peanuts and peanut containing items, our Christmas candy supply speaks to this (have you any idea how many things "MAY CONTAIN PEANUTS"? Too many.). We have informed the extended family, taken precautions with holiday meals, and steered clear of everything with the possibility of peanut contamination. After all of that, there she was ON CHRISTMAS DAY with a jar of peanut butter in one hand, the other hand stuck in her mouth, slurping peanut butter from her finger. I. almost. passed. out. Josh says, in his typical, practical Josh manner, "Well, I guess this will be the allergy test."

I dosed her with Benadryl immediately and then tried to sit still as my nerves attempted to claw their way to the outside of my body. Peanut! Allergy! Swelling! Puking! Anaphylaxis! I watched her and waited. She fell asleep (thanks to the one-two punch of Benadryl and Christmas exhaustion) without complication and I continued to check her often, for hours. No swelling. No puking. No reaction. I don't know enough about food allergies to know if Benadryl is strong enough to prevent a reaction when given immediately (before the reaction begins) or if this means it isn't peanuts at all.

Part of me is hoping that it means it isn't peanuts at all, because the sheer volume of peanut containing items is daunting. KayTar eats so little as it stands that saying NO when she wants to eat something feels profane. At the same time, if it isn't a peanut allergy, it means it is something else, something unknown, and we'll have to figure that out, which might be more difficult and will probably still lead to us saying NO to certain foods. If we don't figure it out, I'm going to worry about every bite of food that enters her mouth, always waiting for something bad to happen...I don't want that sort of shadow hanging around. I don't know what the best scenario is here, but I do know that the good news of the moment is that she didn't react yesterday, for whatever reason, and that was a nice little Christmas gift, all on its own.

Wednesday, December 24, 2008

Wordless Wednesday: Party Clothes

(I wish this one wasn't blurry, it perfectly captures their personalities.)

PS: Her glasses are not on her cute little face because they have been missing for over a week now! They are in the house somewhere, but several Search and Rescue parties have come up empty handed. Hopefully they will resurface in the Getting Ready for Christmas excavation, but if not, looks like we'll have to get a new pair!

Monday, December 22, 2008

A little better.

She woke up this afternoon (yes, it was after noon) and demanded a princess dress and I knew today would be a better day. It isn't great or fantastic or even quite normal, but it is better.

Yesterday, she kept down 23 ounces of Pedialyte and had two wet diapers, she was awake for about 6 hours. Today, her fever is gone and she's already had 23 ounces of fluid and we'll get at least 6 more in before bedtime. She slept past noon and took a nap shortly after waking, but she is back to herself today for the most part, (she's actually lovingly tormenting her brother right this second! "BubTar, I stole your balls! Na-na-na-na-naaa!" No, it isn't a adult version of I Stole Your Nose, she is referring to a TOY.). She's already had FOUR wet diapers today, which seems miraculous in itself. She vomited once today, after I let her have some dry toast. Eating triggers coughing jags, which in turn causes vomiting. The cough is mostly gone otherwise, but is disruptive and vomit-inducing after she has eaten anything at all. I'm not sure how to go about restarting her normal feeds as anything heavy in her stomach seems to trigger the coughing/vomiting cycle and it doesn't so much good to feed her if it will back up momentarily. The pediatrician suggested that we try 1/2 Pedialyte, 1/2 Pediasure feeds and see if that stays down and then gradually increase the amount of Pediasure. So far, so good.

The long and short of it is, she is improving, but not completely better just yet. Tomorrow we are supposed to have an early Christmas with my parents, the next day is dinner with Josh's family, the day after that is Christmas. It looks like she'll be up to enjoying all of it just in the nick of time, ready to twirl around the rooms in her party dress and show everyone her fancy "clippy-cloppy" dress shoes, to laugh and giggle and dance, everything just as it should be once again.

Sunday, December 21, 2008

She is sick.

In other breaking news, the grass is green and the sky is blue! Fish swim! Birds fly!

This time is a little different, though. No matter how sick KayTar has gotten, she never really acts all that sick. Even when she was so sick that she has been hospitalized, she is still a little firecracker. She chats up the nurses, the doctors, the child life specialists. She smiles and laughs and plays silly games with me. She tries to stand up and gurney surf. She uses the angled part of her hospital bed as a slide. She's bursting with life, all the time. Except that she isn't right now.

Yesterday morning I woke her and dressed her to go to the pediatrician's office and she only opened her eyes briefly. She slept in the car. She slept in the stroller. She slept in the waiting room. She slept in the exam room. She barely opened her eyes when the pediatrician started the examination. She didn't fight the strep swab. She didn't fight the nasal swab. After the exam, she whispered, "Put me back in my stroller." She didn't chat with the nurse or the receptionist, she didn't talk the pediatrician's ear off. She woke briefly to vomit. She didn't even muster the strength to cry. Everyone noticed. She's a frequently flyer at the clinic (of course) and she's never been so subdued. It was very sad. It was not, however, strep or the flu or bronchitis or pneumonia or anything else treatable.

She was only awake for maybe four hours total yesterday. She felt too sick and exhausted to be up and around. It is all very unlike her. The quick and dirty summary of the day is: 4 vomits, 1 mega-huge-up-to-the-shoulders diarrhea, 21 ounces of Pedialyte in (some of that back out), 2 wet diapers (in the evening, hooray for OUTPUT!), and 1 mostly unconscious and feverish little girl. I feel a bit like I'm chasing my tail, managing symptoms and trying to keep her hydrated. Little by little it is working, we're not in the hospital yet, she urinated a couple of times yesterday evening. But each time I start to get ahead of it, something else happens. She gets enough fluid that she wets a diaper and then suddenly she has the mega-diarrhea (you know it is mega-diarrhea when you can hear it happen from the next room). We sigh with relief that it was only one mega-diarrhea and then the vomiting returns. KayTar is a boat with many holes and we're not sure which one the fluids are going to come rushing through next. If it wasn't for the g-button, we'd have already been in the hospital for a couple of days now, though.

I've danced this dance, carried this load, many times before...this time it feels clumsier, heavier, because she is feeling it all so keenly. It is easier to bear it, to smile through, when she is dancing and laughing in spite of it all. This time, she is not dancing and laughing and the resulting stillness and silence echoes through the house and in my bones.

She woke up today at noon, about an hour ago. Her diaper was wet and her nose was bleeding. I cleaned her up and gave her some Pedialyte through her tube. She said, "Mommy, you can watch your show in the bed and I will sleep next to you." So that is what we did for a while. She actually felt good enough to get up for a while and she's sitting next to me, playing on the Noggin website. She'll be wiped out in a half hour or so and we'll go back to bed, the land of snuggles and snoozes. I'll give her more fluids and lay beside her watching her small chest rise and fall while she sleeps, content to know that even if I can't fix this for her, I can make it a little easier just by being within reach.

Saturday, December 20, 2008

Scariest moment of my life...

In less than 160 characters, via Twitter:

K couldn't catch her breath in the car, started vomiting, turning splotchy. I almost had a heart attack. OMG.

Slightly wordier version:

Josh's car broke down on Thursday. We had to have it towed to the car shop and yesterday it was ready to be picked up. KayTar is still quite sick and I had spent the day tracking her ins and outs (there were no outs to track, she went over 24 hours without peeing), giving her feeds that she vomited back up, and trying to control her cough so she could breathe. Honestly, I was a little weary of it all. The infinite sickness, and the perpetual worries about her intake and her lack of urine, and the wheezing and coughing and vomiting and fever. Regardless of the illness, we took Josh to the shop to pick up the car. I dropped him off and the kids and I headed back home.

KayTar had been coughing the entire way there, horrible gasping coughs, one after another, after another, after another. On the way home it was the same, and then, it wasn't. I'm not even sure at this point what order things happened in. I just know there was coughing, vomiting, NOT BREATHING, and the next thing I knew she was turning colors in my rearview mirror. My baby, splotchy and not breathing. I pulled over across a couple of lanes of traffic and just as I stopped, she caught her breath. Then I caught mine. We were less than a minute from home, so I kept driving. I got stuck at one of those left hand turns without a protected signal, so I ran it when it turned red. I figured the cop would be lenient if I told him my kid had stopped breathing. The rest of the way home she was gagging and sputtering, but breathing. We made it home safely and she didn't have another incident like that one.

I've never been scared like that. There have been many scary moments, terrible episodes, even insane lip swelling from an allergic reaction just this week, but none of it measures up to looking in that rearview mirror and seeing my baby suffocating, even if it was only for an instant or two...because what if it hadn't only been for an instant?

Today we're headed back to the pediatrician to get her lungs listened to just to be on the safe side, and I'm definitely adding this to the list of experiences I'd never like to repeat. I was thankful for her stuffy, snoring little nose last night, because every time I stirred it reminded me that she was still there next to me, breathing in and out steadily, just like she always should.

Friday, December 19, 2008

Please spell the following word, "Disgusting."


Causing disgust; offensive to the physical, moral, or aesthetic taste.


I was tube feeding my child and she vomited, proceeded to wipe some off her chest with her finger, lick it, and say, "Mmmm! Pediasure! It is so sweet!"; it was disgusting.


Thursday, December 18, 2008

Like Botox for the preschool set...

Monday, right after posting my little list of miracles, KayTar woke up with a nasty cough and trouble breathing. What cold is complete with a little asthmatic bronchial involvement? I kept her home Monday because I couldn't control the cough even with the cough suppressant and her inhaler. Tuesday she seemed a bit better, so we went to therapy and school. Yesterday, she spiked a fever. The pediatrician wanted to see her, so we went in. After talking the pediatrician's ear off (she loves a captive audience), she was given a mostly clean bill of health. Clear lungs, ears, throat. Just remnants of the nasty cold.

The rest of the evening was fairly normal. Dinner. KayTar's feed. Cough medication. Playing. BubTar's bath. Same old, same old. Josh went out to run an errand and on his way back his picked up treats from Dairy Queen. I had a cookie dough Blizzard, but it was way too doughy for me and I only ate a few bites of it. KayTar was interested in it, so I gave her a few bites of the ice cream portion. A little while later, Josh, KayTar, and I were all in the bedroom. I was about to pull her up onto the bed to cuddle with us when she gagged once. Then she vomited. Projectile vomited, EVERYWHERE. We waited for her to finish, then stripped her down. I dunked her in the tub, Josh cleaned the mess. I dosed her with Zofran. (I actually thought maybe the puking was a sign that maybe she had a GI bug which was causing the new-onset fever) We jammied her and tucked her into bed with us to watch TV. I looked over and saw her rubbing her lip and got her some Chapstick (the same kind she's been using for months now) and handed it to her. She put it on and handed it back. I noticed she was still messing with her lip. Then she sat up and I saw it.

I sent the pediatrician a quick email. I wanted to make sure I could give Benadryl in conjunction with the meds she had already taken (dextromethorphan, Zofran), but it was late and she understandably didn't answer. I found a drug interaction checker online and put her meds in and got the virtual green light. It was still swelling, so I went ahead and gave it. Then I waited. About an hour later, her top lip swelled up, too!

Then, I was freaked out. I'd given Benadryl and she was still swelling up and it was QUITE close to her airway. I kept making her show me her tongue to make sure it wasn't swelling, but after she fell asleep, I couldn't check it any longer. I called the pediatrician's on call service. They tried to wake the nurse and couldn't. They connected me to a different nurse instead. She wasn't very helpful. She told me exactly what I was already thinking. We could stay put, wait it out, and possibly get into a bad position if the swelling affected her airway...or we could go in, possibly unnecessarily, and be in the ER for hours. After hemming and hawing, I decided to go in. I usually try to stay home at all costs, but this has never happened and I was too concerned about her airway to get any sleep anyway. I sent the pediatrician another email to let her know we were going to go in as I was getting ready and she replied. (Yes, my pediatrician is awesome and returns emails at 2 in the morning.) She said we could stay home, give more Benadryl in a little while, and if she wasn't actively swelling and her airway was okay, I could get some rest. If the swelling didn't stop progressing, we needed to go in.

After the Benadryl, I watched her for a bit and the swelling didn't seem to be increasing, so I tucked her in with me. (Sorry Josh, back to the land of fairies and flowers for you, sir.) I checked her periodically through the night and she made it through just fine. This morning there is some residual swelling, but not like last night.

The only new thing she was exposed to yesterday was the Blizzard from Dairy Queen, so that must have triggered it. Maybe the vomiting was actually the beginning of the allergic reaction, rather than a separate illness-related event. Maybe the Blizzard had peanut traces in it that she reacted to, though, she's never reacted to peanuts/peanut butter before. I really have no idea, but I definitely do not want to expose her to whatever caused it again. The pediatrician wants to test her for a peanut allergy, but in the meantime we will steer clear just in case and keep the Benadryl on hand. That is not an experience I want to duplicate!

Angelina Jolie called, she wants her lips back.

Monday, December 15, 2008

10 Small Miracles

1. The kids will not lose insurance coverage until January 31st at the earliest. (if Josh's boss is agreeable, or if I can find a job with good benefits in that time frame, they won't lose it at all.)

2. An angel sent me a gift in the mail this weekend that made a lot of things possible for our Christmas that would not otherwise be so. It was one of those moments that knocks you flat on the floor by how thoughtful and kind people can be and makes you believe in Santa all over again.

3. My husband slept in my bed last night. Oh, yes he did. Unfortunately, all we did was sleep due to the number of cold and decongestant medications we had ingested for our shared head cold.

4. My semester is over. I survived what was definitely my most challenging semester academically and personally thus far.

5. IT SNOWED LAST WEEK! REAL SNOW! (seems impossible, as I wore a tank top yesterday)

6. I made an A on my Microbiology final. (that is an A+ to you Canadians with your crazy grading scale) I haven't gotten my other grade yet.

7. KayTar got sick last week and it was a totally NORMAL kid illness. The first night was rough, but she only missed 1 day of school and it never escalated!

8. The granulation tissue is shrinking! (Josh calls it "The Dude" because he is terrible with medical terminology. He kept making up fancy words when he would ask about it, so finally he just went with "The Dude" as in, "How is The Dude looking today?")

9. KayTar ate CHEESE! She snuck into the fridge and snitched some shredded Italian cheese. She has never, ever eaten cheese. She told me, "I ate cheese! It was delicious!" I called Josh to tell him and KayTar overheard me talking about it and gave me this spastic wink and a big thumbs up. Adorable.

10. Josh and I went on a DATE this weekend. A date!

Thursday, December 11, 2008


Yes, it totally deserves all caps.

First, I was excited about this....

Oh, look! Snow! On the ground! How miraculous!

Then I drove to meet Julie for dinner (with the windows down, so as to fully enjoy the snow). After dinner, I had to wipe nearly an inch of snow from my car windows and arrived home to find this...

So I immediately did this...

Then Josh and I did this...

Then Josh made a giant snowball...

It was up past my shoes!

I've lived in Texas for 21 years now. It snowed once when I was in 5th grade, but it looked more like that first photo at the top. Then it snowed in 2004, but I don't even think it was a full inch. This was miraculous. It may never snow like this again here, but it sure was fun!

I can look out my window this morning and still see the snow covering everything, though the snow on the grass is quickly melting. Our snowman has lost his head, but his body still stands. Josh's giant ball is still intact, too. For a few hours last night everything else, every problem we've got, was covered with a snowy white blanket and for a little while, ceased to exist. It was quite a gift.

Tuesday, December 09, 2008

Read all about it!

Special Interest

A man recently received an automatic 3% cost of living raise and it has thrown his family into a crisis situation. This small raise puts his family income roughly $20.54 above the SCHIP income guideline for his state. His daughter is uninsurable by private insurance standards due to multiple health conditions, and the family had exhausted all options before working to get their children enrolled in the SCHIP program. His wife works with the Children's Defense Fund, sharing their story in hopes that people will listen and see the need for changes within our state and national children's insurance programs. One of the most sought after changes is a buy-in program, so that families above the income guideline but unable to financially or medically qualify for private insurance, have an option. If this legislation goes through in the next session, she will feel satisfied knowing no other families will have to experience what hers has had to experience, not once, but twice, this year. The family has not lost their coverage yet, and are currently hoping for a Christmas miracle as the man speaks with his boss once again about the financial aspect of the problem. The first time the man requested a pay cut, he was ignored despite explaining the tenuous at best situation of his daughter and her medical needs. The second time he was told no. We all wonder, can they be so cold hearted as to deny him a third time, especially around the holidays? We wait with bated breath to find out.


A young girl named KayTar had multiple surgeries in early November. Her recovery was easy despite persistent antibiotic-induced diarrhea, but the week of Thanksgiving, she developed a MRSA infection at her biopsy site. MRSA, or methicillin resistant staphylococcus aureus, is quite aggressive and had her parents wondering if they might be spending the holiday in the hospital. Thankfully, the oral antibiotics turned the tide just in time and the family escaped such a fate. Late last week, she began to develop granulation tissue around her stoma site. Granulation tissue is fibrous connective tissue that develops outside of the body, in an attempt to close a wound the body feels should not be there, such as a stoma from a g-button. Friday it was barely visible and by Sunday night, it was almost interfering with the ability to close the button effectively. This is being treated with a round of topical steroids which will hopefully heal it nicely. If not, it may be treated by chemical cautery with silver nitrate. Yesterday, for the first time since her surgery, the young girl has fallen ill. This morning her first words were reported to be, "I fink I'm going to throw up." Her parents are interested to find out if this recent run of health can be attributed to a successful surgery or if it is due to the near nonstop antibiotics the girl has been on since her surgeries a little over a month ago. Only time will tell, but something tells me this might be the first of the many infections she will experience throughout cold and flu season.


A hunter recently brought home his conquest and decided to make jerky. He slaved over the dehydrator all day long, just waiting for a taste of his delicious trophy. Evening came and it was finally finished. He put it into a ziploc bag and left it on the kitchen counter to cool. The hunter then laid down on the sofa and quickly fell asleep. Hours later, he awoke. He could not find the jerky anywhere. He inquired of his son, "Where is the jerky?" He claimed, "On the counter, I only took one piece!" The man could not find the bag of jerky, but this is typical. The hunter might be able to stake out animals, but he is wholly unable to find things in his native environment. His wife sighed with exasperation. "I'll find it." She had to look no farther than where she stood, though. On the floor was an empty ziploc bag, with a small hole torn in it. "I found it. It is on the floor." Realization dawned on the hunter's face, "Nooooo. Nononononono! CAT! DOG! NOOOO!" The delicacy of his handiwork, stolen and eaten by a cat and dog who understand the true power of teamwork. The hunter mourned his great loss and can still be heard mumbling under his breath, "Stupid cat. Dang dog." many times each day.


We attempted to interview a local college student about her upcoming finals, but she just stared at us with her crazy, twitching, exhausted eyes and handed us this photo before stumbling towards the nearest coffee shop. On the back she had scrawled, "And this is only ONE of the stacks." That says it all, doesn't it?

Monday, December 08, 2008

When hell freezes over...

Alternately titled, "When the Blessed Machines Bring Snow to Poor, Deprived Southern Children"

Everything is bigger in Texas (except snowmen).

PS: I'll write up The Insurance Saga, Part Deux in a couple of days. I have finals today and tomorrow so until then, enjoy these photos of wholly delighted children.

Saturday, December 06, 2008


The cost of KayTar's medications with insurance coverage:

Zofran (generic).............$5.00
Bactrim (generic)...........$5.00
Bactroban (generic).........$5.00

Total: $55.00

The cost of KayTar's medications without insurance coverage:

Zofran (generic).............$269.99
Bactrim (generic).............$17.99
Bactroban (generic)..........$44.99

Total: $621.95

Says it all, doesn't it? (except for the doctor's visits, feeding supplies, Pediasure, therapies, occasional tests and hospitalizations, the chance that her tube pops out and we need a new one immediately....well, you get the idea...)

PS: If you are new to this portion of our story, clicking the insurance label at the bottom of this post will fill you in on the rest.


Funny story, I got an email from someone at the CDF yesterday asking about the kid's losing their coverage. Do you know how they found out? THE BLOG! They are brainstorming about solutions, but in the meantime, we've stocked up on KayTar's medications and are getting ready for what seems to be inevitable. We'll make due, just like last time, but I really wish we weren't in this position, especially right before the holidays.

Thursday, December 04, 2008


I've had this weight on my chest for a week now.

Pressing down,

Squishing my internal organs,

Making it nearly impossible to think of anything else.

Though, the full weight of it was not yet upon me, one silvery strand of hope kept it from crushing me completely. Yesterday, the strand was cut.

I was crushed. I am crushed.

I cried. Tears prickling in my eyes only adds insult to injury. The world is out of my control and now my emotions are, too.

By the time Josh got home, the moment of weakness was a glimmer in a distant past, hours had gone by...but he saw it there. He saw me, only I wasn't quite myself.

"What is wrong?"

Everything. Everything seems wrong.

"You know what is wrong."

"What can I do?"

You could lift this crushing weight from my chest.
"Nothing. You and I both know there is nothing else to be done. We've tried it all before."

"Are you upset with me?"

Not unless you are calling the shots for the Universe, buddy.
"No, you have nothing to do with it. You know that."

He can't take this. He wants to be responsible, to take the brunt of my pain somehow. If he is responsible, then he can apologize, he can fix things.

I long to fix the situation and he longs to fix me.

He works at it all evening, at one point I stop him, "I can't just be happy to make you feel better. I know you want to fix this for me, but you can't. It is what it is and I can't get past it yet. I just can't."

He kisses me on the head and says, "Okay." But somehow, minutes later, I find myself smiling at him, laughing a little even. I crack a joke about this shitty hand we've been dealt, again, we both laugh.

He and I, in it together.

The weight suddenly spread between us, light enough for me to catch my breath again, at least for the moment.


The weight is this: It seems quite certain that KayTar is losing her insurance again. It is a long story, one that I won't give the details of until it is said and done. A small part of me believes there will be a reprieve this time, that we won't be living this all over again, but the logical part of me knows...there is no reprieve, and we are already living this again. Only this time, I think we really have exhausted all the options.

This little blip will probably be deleted shortly.

Wednesday, December 03, 2008

Wordless Wednesday: In and Out

Yeah, I meant that literally.

Monday, December 01, 2008

Morning and night

In the morning she wakes before me, popping upright in bed. Her first words are, as always, "Where's Daddy? Where's BubTar?" It is the way she makes sense of the day. If Daddy and BubTar are home, it is the weekend or a rare vacation, if they are gone, it is a school day. I mumble in from my semi-conscious state, "Daddy is at work. BubTar is at school." She starts to whine, but I cushion the blow quickly by saying, "That means you get to go to school today, too! Won't that be fun?" Her tune changes, "Oh yes, that will be fun, I will get to see my friends and my teacher and every-fing! Let's get out of bed! Let's go now, Mommy, let's go." I beg her, "Please, let's just lay here for a minute, let Mommy's eyes open a little." She tosses herself back onto the pillow, "Okay, let's wait." She watches me closely, I imagine, because as soon as I pry one of my sleepy eyes open in a half-squint, she is cheering, "You're doing it, Mommy! You're doing it! You're opening your eyes! Now blink like THIS. YAY MOMMY!" Still squinting I reach over and pull her to me, she giggles all the way. I kiss her forehead and cheeks and she exclaims, "Do it again. Kiss me on my eyes! Kiss me on my chin! Kiss me faster! You're so silly, Mommy." She laughs and I smile a sleepy smile. She collapses next to me and breathe her in and close my eyes. She senses my relaxation and prods, "Are your eyes open? Are we ready to go? Let's go, Mommy!" I sit up with a growl and tickle her. She giggles and wiggles. Finally, I pry myself from the warmth of our big bed and we start our day together.


At night I lay with her in bed. She says, "Pull me over there, Mommy, closer!" I grab her pillow and pull it closer to my pillow, so close that the edge is tucked beneath my own. She giggles. "Now hug me!" I wrap my arm around her and she nuzzles her forehead against mine. I brush her hair back and kiss her forehead, her eyelids. I whisper, "I love you. You're my best girl." I run my finger down her little nose. She breathes out, "You're my best mommy." She sighs loudly and wiggles her little body one last time. I lie there in the quiet, listening to the rhythm of her breathing as it slows. I watch her eyelids flutter. I smooth her hair back. I trace the lines of her face with my eyes, committing her silhouette to memory. I kiss her little knuckles, still clenching her blankey. I watch for a response, a reflexive movement, but there is none. I roll away from her slowly, tentatively, I sit up on the edge of the bed, then I stand and scurry swiftly and silently from the room.