Friday, August 29, 2008

So, my kid might need a feeding tube...

Well, I just dropped that bomb and promptly skittered away, didn't I?

It boils down to three things, really.

She is losing weight.

The weight loss is pretty self-explanatory. Her weight should be going upwards or at the very least, staying the same. It should not be going downwards. We shouldn't be back in the 20's, when we fought so hard to get into the 30's. Which brings us to Concern #2...

She hasn't changed her base level intake in over two years.

This one is a bit of a no-brainer, too. Two years ago, she was a lumpish little doll whose biggest activity was rolling around on the floor banging a couple blocks together or perhaps sitting up for a couple minutes, if she was feeling WILD. Now, she is a preschooler. She goes to school. She walks, talks, and plays. She tries to run and jump, albeit unsuccessfully, but trying is hard work, too. She has baby dolls to nurture and pretend food to cook. She has make-believe vacuuming to do, for goodness sakes! She simply MUST change dresses six times per day! She is very busy with all sorts of extremely important preschooler-type business, and her body needs fuel for these very important tasks, fuel in the form of NUTRIENTS, which she just might not be getting enough of. If she was getting enough, her weight (see Concern #1) would be going upwards, rather than downwards. Everyone expected her to begin to eat as she aged, but she hasn't. That is a problem in itself, and it is compounded by Concern #3...

She gets sick quite often and we get caught in the illness, dehydration, and occasional hospitalization cycle, complicated by ENDLESS rounds of everyone's favorite new game show "Will My Child Urinate Today?"

KayTar gets sick. A lot. KayTar stops eating. KayTar stops drinking. KayTar stops peeing. I spend every illness documenting intake/output and watching the clock to see if it is time to go to the hospital yet, helpless to do anything about the situation other than write about it ad nauseum and try to push fluids without appearing to care about the results at all. This is clearly failing, because when she finally peed yesterday, she exclaimed "Mooooom, guess what's in my diaper for YOU? PEE PEE!" I think my nonchalant cover has been effectively blown. She started school and will now be directly exposed to more illnesses, which might hurt her already tenuous-at-best balance. If she isn't getting enough on a good day, every time she gets sick and is getting little to nothing, it just increases the deficits.

When this came up the first time, I was really blindsided by it. It seemed to me that there was no way that this kiddo who CAN eat by mouth would need a surgical intervention. The truth is, CAN does not equal WILL or DOES SO RELIABLY, this I know. When it came up again in the feeding clinic appointment this week, especially in light of her illness and weight loss, it felt logical and appropriate. Subsequent conversations with the pediatrician were very much the same, rational and relevant. I will be honest and say I did feel a little twitch in my gut, a bit of emotional uprising to hear it confirmed by two of her doctors, but it wasn't strong enough to obscure the bigger picture. I've spoken with parents whose children have had feeding tubes, I've read medical studies, I've even watched videos of multiple surgeries and subsequent tube replacements. This is a strong possibility for KayTar, and I think I'm okay with it now. I think Josh is, too, actually, which is really saying something. He's not too fond of medical interventions. Watching her struggle to stay afloat in the midst of recent illnesses has been eye opening for us, and if this is what she needs to continue to thrive, then we are on board. No one is telling us we have to do it right now, but it does sound and feel like the time is approaching. Eight months ago the thought of it left me reeling, but today, looking at my gorgeous girl beaming from her first (belated) day of school, I know that we will do absolutely anything to keep her happy and healthy. If trying our very best isn't quite enough anymore, then we have to find a way to make our best even better. If a feeding tube can do that for her and for us, of course, we'll embrace it.

You really can't deny anything to a face like this.

On her first day of school

Hi! My name is KayTar. I'm so glad to be in your class this year! My mom helped me write this letter to tell you a little bit about me that might help our year go more smoothly.

Sometimes I have neurological episodes that make me feel very sick, when that happens I need to be given .2ml of Zofran gel on the inside of my wrist and I'll need you to call my mommy right away. Usually I need to lay down some place dark and quiet when I start to feel sick, too.

These things might help you know that I am starting to feel sick:

* I suddenly look very tired. I might lay my head on the table or close my eyes. If I'm standing up, I might hold on to something for balance and close my eyes.

* I might stop responding to you. Sometimes I get very quiet and sometimes I make noises like I am in pain. It might seem like I am slipping in and out of a deep sleep, too.

* I won't want to stand up or walk. I probably won't move at all, because it makes me feel worse.

* Sometimes my eyes do funny things. You might see them wiggle or roll. Sometimes they get stuck over to the side, and sometimes I can't open them at all.

* I might say, "I feel spinny." or "Everything is shaking." or "My eyes feel sick."

* When I get sick, sometimes it hurts my tummy and I start to vomit.

* I might be in a lot of pain and the lights might really hurt my eyes.

It is important to remember that all of these things don't happen every time I get sick, but if you notice even one of these signs, please call my mom so she can come and get me. My doctors aren't really sure how to stop these episodes, so I have to go home and rest in my bed until it is over. Sometimes they can last a very long time, up to 11 hours.


I also have asthma and if you notice me coughing a lot or coughing so hard it makes me gag or vomit, I need to be given 4 puffs from my Albuterol inhaler with the yellow spacer mask.


I can't hear much with my left ear, so I wear a purple hearing aid in that ear. If you hear it squealing, usually you just need to wiggle the ear mold and push it in to help it make a tighter seal in my ear. If it keeps squealing, I'll probably pull it out of my ear, if that happens and you can't fix the squealing, it is okay to put it in the case in my backpack. Because I don't hear as well without it, make sure you speak clearly to me if you have to take it out and if you are helping me do something, stay on my right side. When my hearing aid isn't in, it is hard to me to filter out background noises and I might have a harder time focusing.


I don't like to eat much, so at lunch time I might choose not to eat. My mom will send two jars of baby food and a snack for me every day, just in case. If I want to eat the baby food, I will need help spooning it into my mouth. I don't have any food allergies, but the textures of some foods might make me gag. I try my best not to touch these foods or get too close, so if I ball up my hands or say "No!" it means it is probably the kind of texture that will make me gag. If it gets too close to me I might push it away from me to protect myself.


I'm so excited to be in school this year and I know I will have lots of fun in your class!

Your new student,

My baby is at school now. When I left, she was in the pretend center, vacuuming the rug. She said, "Look! I'm vacuuming, just like Daddy! Bye Mom!" That's my girl!

Wednesday, August 27, 2008



KayTar missed her first day of school, because she is sick.

I had to drug her up so she would stop vomiting mucus and I could still take her to the feeding clinic to the appointment we've been waiting months and months for.

Found out the kid is losing weight.

We had The Talk about the g-button (feeding tube) again.

I freaked out a little. Talked to a few wise friends and our pediatrician. Calmed down.

Was interviewed for local newspaper.

Went to A&P II, received the dead cat we will be dismembering this semester. Looks just like Peanut.

Came home to child running 104 fever.

Gave requisite meds. Tried to push fluids.

Acquired sore throat.

Washed BubTar's required uniform for today (well after midnight).

Collapsed into an exhausted lumpish heap.


KayTar missed her second day of school. Was called by the school to make sure we were not no-shows.

Changed exactly one diaper, this morning. Not urine. Diarrhea.

Was in local newspaper.

Went to pediatrician. KayTar had a strep swab, I had quick throat check. There was more talk of g-buttons, weight loss, and illness. Not strep, it's adenovirus. Discussion of getting rid of pesky tonsils.

Checked her diaper incessantly.

Watched hours go by, 12, 13, 14, 15, 16, 17....and counting.

Contemplated whether I will miss class tonight to go to the ER...or go to class and THEN go to the ER. Unless she pees, of course. Do you hear that KayTar? PEE ALREADY!

Checked Bloglines. DEAR GOD HELP ME. Tell me if there is anything I need to know about you, because chances are, I'll be hitting "Mark All As Read." I hate to do it, but free time is severely lacking this week.

Wrote this post.

Checked her diaper again, just in case there was good news before I hit publish.

Reread post.

Checked diaper again. Just in case, you know. DRY.

Hit publish.

ETA: She peed @ the 18 hour mark. Whew. For now.

Sunday, August 24, 2008

Let's see how far we've come

Two years ago today, I wrote this:
Today we had our ECI consultation for KayTar. Basically, we signed a lot of paperwork and set up a lot of appointments. She has three evaluations (speech, physical, nutritional) scheduled for September, with a fourth (sensory) to be scheduled soon, as well as her neurologist appointment, MRI, and well baby visit. Two months ago, I thought everything was okay. I had some concerns about KayTar's development, which is one of the reasons we switched pediatricians, but I had no idea the depth of the problems we were facing. Her pediatrician had never voiced a single about her development, in the year and four months we had been seeing him. I noticed things here and there that weren't quite right, but because he never mentioned it, I assumed I was being "that mom"...the mom who worries about everything when there is nothing to worry about, the mom who should have the parental controls set to keep her from Googling anything and everything under the sun that could be wrong with her child. When we went to our first appointment with the new pediatrician, she noticed all of the things I was concerned about within ten minutes of being with KayTar. We treated the ongoing constipation she had been experiencing, and set up a second appointment to discuss the delays.

KayTar is eighteen months old. She is still on an all baby food diet, because she cannot tolerate anything thicker than a Stage 2. She loves to "eat" things like crackers or cookies, but she spits out all the pieces. If a piece sneaks by her, she gags and throws up. She cannot even tolerate table foods like mashed potatoes. She is not walking or standing independently. She only started crawling on her hands and knees in the last month. She is currently only saying two words, "Go." and "Sit." She had more words in her vocabulary, but has lost them. She used to say things like "Mama." "Dada." "Bubba." "Dog." "Diaper." but she doesn't anymore. She has just recently learned to play with a few of her toys appropriately, things like her Dino Ball Drop and her stacking rings, instead of just mouthing the pieces or banging them together. She cannot follow commands, ie. "KayTar, come here." or "Roll me the ball, KayTar!" She is still very much an infant in a toddler's body.

On top of the developmental delays, she has begun having seizure-like episodes. She had her first one in May, and we were unsure of what was happening. Her previous pediatrician tested for meningitis, which came back negative, and never followed up. About a month ago she had a second episode, and then a third, two weeks after the second one. They seem to be progressing.

When I walked into that second appointment with the new pediatrician , my whole world changed. There was so much information to absorb that it just wasn't possible...for days after, I kept waking in my sleep, remembering bits and pieces of what she had said. "The delays are significant and we have to find the answer." At this point we are still waiting. We have had blood work taken and results returned. It is not chromosomal or metabolic. We had an EEG while we were in the ER for her third episode. It came back abnormal. I asked our pediatrician what our possibilities were at this point, and she said physical problems with the brain. It could be a structural defect, perhaps something didn't develop right prenatally, or it could be a tumor. We don't know. If the MRI is inconclusive, we still won't have an answer. September will be a long month.

After that appointment, I quit my job. I am now a stay at home mother, or rather, KayTar's administrative assistant. I keep her calendar and a notebook filled with contact names and phone numbers, along with appointment locations, instructions, and times. I am here to spend all the time I can with KayTar, and my older son, BubTar, and to keep things as normal as I can for both of them. Its amazing how one moment can change the entire course of your life. I can handle it changing my life, but I don't want it to change the lives of my kids. They deserve to enjoy their childhood and not have to worry about big things like this. I am thankful that this experience has taught me how to live in the moment. I don't spend my days fretting over the future, about things I can't control. I spend my days loving these kids and soaking up every moment and memory I can with them, because in the end that is all that really matters.

Two years ago, I started this blog with those words. Two years ago, my life as I knew it previously; my two healthy, typical kids, my full time job, our two incomes, our plans for the future, had suddenly been ripped away. I was alone in an unrecognizable world, silenced by my fears. I was full of words that I couldn't bring myself to speak aloud, and so I wrote them instead. And I've continued to write them, daily or weekly, ever since. This is where I pluck worries from the weighty trees of my mind, studying each one intently and describing it to the best of my ability. One I've felt the weight of it in my hands and detailed every inch of it, I drop it into the basket. Processed. The trees are ever lighter for it, the branches suddenly unburdened, free to stretch towards the sun once again. And you, you all, are the basket, delicately catching the burdens I discard, cradling each one gently, forever a soft landing. The trees willingly relinquish their fruits, knowing that loving hands and a warm reception awaits.

When I read through that first post again, my heart was instantly in my throat. I remember that quiet anguish, those gnawing fears. I remember all the things I didn't know, things that are so clear in hindsight. I reread the list of words she had lost and gained, and think, "She lost those, too." and in the next instant I think, "But she has gained the world." I read about the episodes, all three of them, and want to stroke my hair from my own slightly younger forehead and say, "Oh, baby girl. You don't even know. There are more to come, so many more, but you'll get through it, you and she. They don't get any easier, but you'll carry her through." I read about the concerns about her wee brain and I want to scream, "It isn't a tumor!" so it can stop eating me up inside, and whisper, "But it is something." so I'm not blindsided. I want to go back and hold my own hand, carry myself through, whispering hope and calm into my own very frightened heart, sharing the knowledge and wisdom I've gained.

Then, KayTar was a mystery, the pediatrician was the unknown hero, and there were so many questions without answer. Now, KayTar still has a bit of mystery about her, though not so much in the ways that really matter. The pediatrician is no longer unknown, although she is still our hero, consistently providing KayTar with the best possible care and always willing to go above and beyond for us. There are still many questions without answers, but we've learned a lot along the way. I still worry about how things affect BubTar, like when we had to leave his birthday celebration because KayTar had an episode, how he apologized, how he was afraid to go back to the museum because he didn't want to make her very sick again, but I know we're doing the best we can with this, that most days our lives are pretty normal.

I don't look through my own archives very often, unless I'm searching for something specific. It is a little uncomfortable to reread my own words, instantly transported back to the fear or worry or pain of a particular moment, to stare back at a giant I've since overcome, still feeling every bit as small as I did the first time I faced it. Even though I don't read through it often, I am so pleased to have these words and moments recorded to remind me of where we've been, how it felt, what we've overcome and gained. There are moments of great joy stored here, her first signs, her first words, her first steps. There are dark moments here, too, moments filled with worrying about my sweet girl and her mortality, trips to the hospital, tests and results, the records of nearly every episode she's ever had. There are mundane moments, too, the universal moments of motherhood we all seem to share, lost teeth, sleepless nights, the hilarity of small children. Every bit of it coming together to tell the story of us, the story of her, the journey of our becoming.

Friday, August 22, 2008

And on the fifth day, he was absent.

He made it through school yesterday, but as soon as he got home his fever started snaking up the thermometer, each time I checked it, it was a bit higher. He spent the afternoon curled up snugly in our big bed with ice water and cartoons. His only requests were, "Can you get me some fresh ice? This isn't very cold on my throat." And "Can you please come snuggle with me? I can't get comfortable without you." I find it delightfully easy to parent a mildly ill child, illness hastening the return of that infantile stage in which they only want their base needs met, thirst, hunger, and cuddly comfort. No arguing, no boredom, they are simply pleased that you fetch them cold ice water and hold them close enough that they can relax and drift to sleep easily.

When the kids are sick, Josh volunteers to sleeps on the couch so they can have the comfort of our great big comfy bed and the benefit of having me within arms reach, and so I can hear their fevered whimpers or painful sobs without racing up the stairs to get to them. Last night, BubTar and I were watching television together and he turned away from it, curling into my side and closing his eyes. I said, "Are you ready for bed?" and he said, "No, I think I should just close my eyes a little." So I fetched his medicine and by the time I got back to him he was nearly asleep, my poor sick boy with the pink cheeks and sleepy eyes. I curled up with him again and stroked his feverish forehead and he was asleep before I could even blink. I tucked him in and snuck out of the room for a bit. An hour later Josh, who cannot detect any but a raging fever, called me into the room, concerned about his very hot little head, which had likely jumped from a 102 to a 103. He was beginning to sweat, though, his fever finally getting to the breaking point and as we hovered near he slowly began to feel cooler. We both slept through the night, for me this first time in a week.

Today he's home from school, too sick for school, but not quite sick enough to need to see the doctor, existing in the land of ice water, cartoons, and spontaneous napping. Feeling well enough to be hungry, but too sick to actually sit up and eat the toast he's asked for. He was cool this morning, but his fever is working its way up again, 100, 101, 102. We're playing the quarantine game again, KayTar in the living room, BubTar in the bedroom, me pingponging between the two. When things get quiet enough I sneak back to check on him, brush his hair off his hot little forehead, rest my hand on his chest and feel his fervent little heart pounding inside his small furnace of a body, hoping that soon he'll feel good enough to run and play again, far too busy and too healthy to need the quiet comfort of his mother's arms.

Thursday, August 21, 2008

I'm an idiot.

School started on Monday and you know what goes hand in hand with school? The plague.

So yesterday, just for kicks, I went through my archives (handy!) to see when the plague first visited us last year. 7 days into the year. (Hello, Jinx. Have you met my friend Kyla the Idiot? I think you two will really hit it off!) And then, I awoke suddenly in the night to a small boy crying his eyes out and sounding rather like a long time smoker. The husky voice and hacking cough. Niiiice. He also said his throat hurt. Niiiiicer. So what did I do today?

Sent him to school.

Once the crisis of the night passed (the crisis of the night being the kitten holding pouncing practice on top of a sleeping BubTar at 3am), he woke up sounding a little better. He wasn't running a fever, his cough was less persistent, and he got out of bed on his own this morning, all goodish signs. It is the 4th day of school and I'd rather not start the absence loop quite so soon, and since he wasn't feverish or half-dead, I sent him in. And I'm sitting here feeling rather like a jerk. I usually don't send my kids anywhere if they are ill or suspected to be ill. With a kid like KayTar, I tend to be a little less inclined to share our germs, in the hopes that somewhere in the karmic circle somehow we will be repaid for this by OTHER parents keeping their festering little darlings at home when infectious.

I'm half-expecting the phone to ring any minute, asking me to pick up my virulent little offspring from school as soon as possible. Even if they don't, I'm kind of dreading the evening with an exhausted, under-the-weather kid, and the night, too, of course. As every parent knows, they are always sicker in the night. (If you don't know that yet, please, don't tell me. You are too lucky and you might just jinx yourself.) I haven't slept for more than a few hours a night this week and it is starting to wear on me.

I'm also questioning our choice for last day of summer celebration. The Hotbed of Microbial Growth Museum? We were kind of asking for this, weren't we? As we walked into the museum, Josh said, "So, where are the hazmat suits?" Indeed, Josh. Indeed.

Exhibit A: A Taste of Pneumovirus?

Exhibit B: Phone Call to Parainflueza?

Exhibit C: A Closer Look at Streptococci?

Exhibit D: Ironic Pinball Game With a Side of Rhinovirus?

I could go on, but I think you probably get the picture.

Tuesday, August 19, 2008

In Case You Missed It: KayTar's Medical Hoopla, V 2.0

I recently discovered a little something on the Internet. An answer to my organizational prayers, as it were. The Google Health Beta. I was able to convert all of KayTar's medical information into a handy online format. Her conditions, her medications, her doctors, her tests and results, even her immunizations, all of it right there online. I was even able to input the details and dates of each and every one of her neurological episodes. Now that her records are organized and arranged, I thought this would be a good time to post a little medical update. That one over there on the sidebar is a little outdated, although, most of the information is still mostly accurate. So if you're a newish reader, this might give you a little insight into our confusing little KayTar.

1. Pesky little brain lesions

KayTar has a sprinkling of small lesions in her frontal, temporal, and parietal lobes. To quote the magazine article,
"MRIs have revealed lesions in her brain, which are thought to affect everything, including her hearing (she is partially deaf in one ear) and her ability to eat and digest food (KayTar survives on a mostly liquid diet)."
To quote the official MRI report,
"There are somewhat patchy appearing foci of increased T2 weighted signal in the subcortical white matter of the parietal lobes as well as a couple of foci in the frontal lobes. There is also a greater than expected T2 weighted signal in the subcortical white matter of the temporal regions and subinsular regions. This pattern of signal abnormality is non-specific and could be the sequela of a previous insult as might be seen with a congenital infection including CMV (although no parenchymal calcification on remote CT)...prior infection, demyelination, ischemia...less typical for a metabolic disease."
I prefer the short magazine quote myself, but I know we have some of you medical types out here that might like the technical description.

2. Developmental Delays

At one point, her delays were global and severe, but as we've worked with her in therapy and at home, she's quickly closed her gaps. She would probably look like any other child if you met her these days, as long as it wasn't on the playground. She struggles a bit there. She is starting the special education preschool program next week and will be receiving speech and occupational therapies while in school, and she will be in private PT and OT as well. Although her motor delays are now the most striking, she did not qualify for PT through the district. Her orthopedist prescribed 2-3 session per week for her, so we are taking care of it privately. The private OT is meant to assist with her sensory aversions and feeding difficulties.

3. Feeding Disorder

KayTar gets the majority of her nutrition through her bottle of Pediasure. Yes, she is three. Yes, she drinks a bottle. Yes, we are okay with this. At this point, taking the bottle would likely result in a g-button, so we're just fine with the bottle. KayTar has very strong sensory aversions, especially where food is concerned. She also doesn't appear to feel hunger, either. You know how they say, "Kids won't starve themselves."? Well, she is one of the exceptions. She will starve herself and she won't even realize it. She also has a long history of vomiting. So we're left with a child who doesn't LIKE food, doesn't FEEL hungry, and strongly believes that really isn't too surprising that she doesn't eat. She snacks and picks at her safe foods, today she had a small bowl of her "Lay's Classics", but we can't even depend on her eating her safe foods reliably. Food is optional to her, there is no internal need for it, and her intake is perpetually unpredictable. On a good day, we can get her to eat a couple of stage 2 baby food jars. Thank God for Vanilla Pediasure with Fiber (which is the ONLY kind she will take), without it, she'd be in bad shape. This gets us into trouble when she is sick, because she will often stop eating and drinking completely, leaving us teetering on the edge of dehydration and at times, landing her in the hospital with an "Ivy" as she calls it.

4. Hearing Loss

KayTar has sensorineural hearing loss in her left ear. She wears a cute little purple hearing aid. The loss is moderate to severe, she can hear things like jet planes and lawn mowers, I think. Lately she has been mishearing me a lot, so I'm anxiously looking forward to her next ABR to make sure it isn't deteriorating further. The type of loss she has, coupled with the lesions, makes them think her hearing could deteriorate further, so she has bi-annual hearing tests to keep an eye on things. While we were without insurance, we had to skip her appointment and she hasn't been tested since November 2007.

5. Asthma

This one is pretty minor really, but before starting her on the controller medication, she was vomiting nearly every night from the coughing fits. We always thought, "Oh, that's just KayTar." but once the medications took effect, we realized it wasn't just a quirky KayTar thing, it was asthma! Fancy that! The pediatrician noted some wheezing and a prolonged expiratory phase on exam, too. It took a bit to get it under control, but we haven't had to give her rescue inhaler in a while, and the last time she vomited in her bed was from an episode, I think it is working pretty well. When she comes down with something, we end up having to give her the rescue inhaler, but when she is healthy, we've got it under control.

6. Chronic Constipation

It is well-controlled with a twice daily dose of Miralax, but there was time when it was a pretty grizzly scene. It caused me to coin the term fecal midwifery, if they helps you visualize what was happening. There was one time I thought I was going to have to pack her into the car mid-delivery and rush her to the ER. Thankfully, I was able to fix it...but that was one of those lovely parenting moments I won't forget.

7. Neurological Episodes

This is the difficult one, both to explain and to live through. We believe her first one was about at 6 months of age, but she didn't have another until 14 months. Then at 17 months, they started coming quickly. 2 weeks, 2 weeks, 2 weeks. The pattern has loosened some with time. She's had 34 of them in her little life. The predominate thinking is that they are manifestations of some sort of an atypical migraine syndrome, and the way we describe them to people is "migraine-induced seizure activity". The term migraine doesn't quite convey what happens to our sweet girl. People tend to think it is a headache, but that is far from the reality of it. The presentation used to include an intractable head tilt, but is now a varying combination of pain, light sensitivity, vertigo, involuntary eye movements (rolling, jerking, appearing to be stuck in odd positions), vomiting, and always, always she has an altered level of consciousness. This is the part that rips my little heart out and stomps on it, seeing my bright and beautiful girl suddenly slip away from me, the part of her that make her HER ripped right out of her. She stops responding to us, stops moving, stops opening her eyes. That is the part that always makes my heart little baby suddenly nowhere to be found, even though I'm holding her tight in my arms.


There are other little quirks that make life interesting, but those listed above are the major players. She has a genetic mutation on her 19p13 chromosome that is thought to be inactive. Her glucose levels tank when she gets sick, but she looks just fine. She has an ataxic gait. Her joints are hypermobile. She doesn't react appropriately to cold. She has been reading for over a year. She still has those spontaneous eye movements that look like small seizures. She is wobbly. She gets sick easily and seems to have an affinity for strep. She needs to wear glasses. She's quirky. She's had MRIs, CTs, LPs, EEGs, and ABRs. She's had chromosome analysis and metabolic work-ups and labs out the wazoo. She sees a pediatrician, neurologist, geneticist, gastroenterologist, ophthalmologist, feeding disorders specialist, audiologist, ENT, and an orthopedist. We have to get her medications at a compounding pharmacy because we can't give her oral medications. She has a huge medical file that weighs as much as she does, full of questions that mostly don't have answers. In the end, though, she is just KayTar. Not too long ago she was a silent mystery, mostly shut off from the world, and we desperately grasped for answers so we might know something about her, anything at all. But as time has passed, whatever it is has loosened its grip on her and we've gotten to know her, her laughter and tears, her silliness and love for the stage, her favorite things, her little habits and quirks. We know the things all the things that really matter, so suddenly, the things we don't know don't seem to be quite as important anymore.

Quick update: It is probably time for another version of this, but as we're waiting on a couple of sets of test results, I'll just add a quick and dirty update to this post.

In November '08, KayTar had a g-tube placed to improve her nutrition and intake and is doing really wonderfully with it! She's up to 32 pounds as of her last check! She also had a muscle biopsy to test for myopathies, specifically mitochondrial disease. We are still waiting on these results to come back. She had her tonsils and adenoids out to cut down on her rate of infection. She also had an ABR that showed her hearing loss in the left ear has progressed to the profound levels, her hearing aid is no longer able to help her hear.

In December of '08, she had a fairly dramatic allergic reaction and we are currently awaiting results of her allergy tests. We now carry an epi-pen for her, just in case!

I think that is the latest!

Monday, August 18, 2008

Last Day/First Day

Last day of summer:

First day of school:

To see the previous first days click here.

Saturday, August 16, 2008

The magazine is out! (Now with link!)

Look, it is us holding a magazine with us in it! Trippy! And exciting!

The article was great, so go check your newsstands! Buy it! Read it! Hold our glossy little magazine faces in your very own hands!

And then come back and let me know what you think!

PS: It is the SELF magazine September issue, with J-Lo on the cover.
Or just click here!

Friday, August 15, 2008

Through the looking glass

Last night, BubTar and I attended parent orientation for the new school year. It was just the two of us and found an empty pew. It happened to be directly behind the faculty pews and a teacher or two turned around to say hello to him. He shifted his big beautiful eyes towards the floor and shrugged his shoulders up to his ears. He said nothing in response, but I could see a smile hiding under his lashes, maybe a giggle trying to escape. This behavior always baffles me, my exuberant, opinionated, argumentative, hilarious, talkative boy suddenly forgetting how to speak to make eye contact. It shouldn't surprise me, though, it is par for the course with him. He has spent birthday parties and dinners with his head buried in my lap, ignoring friends or family or anyone else who might be around. I suppose I just have trouble reconciling this version of him with the one we see at home.

We sat together, listening to the administrator and principals have their turns at the microphone. My feet were swinging under the pew, bounced my knees rapidly. I have trouble sitting still. Airplanes are torturous for me. Can't bounce or I'd have very upset seatmates. At the movies, Josh is always squeezing my knee softly to remind me I'm shaking the entire row of theater seats. I swing and bounce while picking at my nails, another little habit of mine. I tear at my cuticles, find tough skin around the sides and rip it loose. The whole time I'm listening to the speaker, absentmindedly it might seem from the outside, but really these things help me focus. If I was trying to sit totally still, well, I'd be thinking about keeping myself still. If I was looking at the speaker instead of poking at my nail beds, well, I'd be noticing funny things about the speaker or maybe counting the tiles on the wall behind him. So I swing and I bounce and I pick...and I listen, too. Then I look over at BubTar. I see his feet swinging under the pew, and his finger in his mouth. He's mid-rip with a slice of his cuticle. His big eyes look up at me, his finger still partially between his teeth. For an instant, I'm looking right into a mirror. A small and boyish mirror, perhaps, but also a clear one.

I drink the reflection in and think deeply. This darling boy of mine, we have fun together, but he is also my sparring partner, my opposition in combat. He knows what to say, how to challenge me. He strikes a nerve. We press our heads together in an endless battle of wills, some days it leaves me exhausted. There are days when Josh gets home, I say, "You get the rest of the arguments for today. I, am out." Occasionally I fling myself across the bed dramatically, feigning utter exhaustion. Perhaps it stems from our sameness.

He and I, we have a temper. Not from rage, but from perceived wrongs. From hurt feelings. Hot, angry wet tears on our cheeks. I remember running to my room as a child, slamming the door, sobbing under my bed until I nearly hyperventilated...countless times. Years of memories and moments go by. Shouting things I didn't mean, things that weren't nearly true. "It's ALWAYS my fault. ALWAYS. I NEVER do anything right! NEVER!!" I hear them echoed by him now, "Fine! I don't want ANY toys. COME AND TAKE THEM ALL AWAY! I HATE PLAYING!" or "No one EVER plays with me. NOBODY LIKES ME!" or "I ALWAYS mess things up! I can't do anything right!" It is all always and never and none with him. I'm still guilty of it, too. A bit quieter now, though. I recall a conversation with Josh from the night before, and the ending, "Twice, does not mean ALWAYS, Kyla." I know why BubTar says it that way, because in that moment, it feels like always and never and none. It feels bigger than it is, as if it will always be the only feeling that exists. It leaves no room for reason. No room for calming down. Not in that moment, anyway, even if he doesn't know yet, there is always another moment where you take a deep breath and feel always and never and none dissipate. He hasn't figured it out yet and I wish he would. I tell him, again and again, I know how it feels, but it won't always. He wails and ignores me, content to be broken over it, whatever the particular it of this moment is, and frustration fills my chest like a balloon. I think, why do you ALWAYS do this? You NEVER listen to me. NONE of this is important. I know because we are the same, we are always and never and none. But the moments always pass. You'll learn this, just let me teach you. Can't we just skip all this?

When I was a child, at home, I was free, always free. I didn't think twice about my words or my actions. I was outgoing and quite funny. I had a dry wit, sometimes a little caustic where my sister was concerned, but clever. I always, always had a joke on the tip of my tongue. At school, though, I was very quiet, never sure how to bring that part of myself out for other people. I knew how to read my family well, these classmates and teachers, they were unknown. Jokes would come to me and I'd swallow them down, never knowing what reaction it might get. My family, they had to laugh, didn't they? Maybe I wasn't as clever as I thought. So I was quiet most of the time. I had friends, though, mostly the ones who were the type to seek me out. The louder ones, happy to have a quiet companion around. Or maybe they could see the sparkle in my quiet eyes, a glimpse of my other self, the one they would get to know eventually. I outgrew the splitting of myself, but slowly and a bit painfully. Most of it just happened the last few years, really. I still do it, to an extent. The me you find here in these pages, isn't always who you might meet out in the world. I'm more honest here, open. I speak of things here that would keep me silent elsewhere. But slowly the pieces are coming together. My trouble with reconciling my son at home to my son elsewhere is really his struggle to reconcile his selves. I wonder what might have been different if I learned this sooner, became one self instead of fragmented, smaller, compromised versions of myself depending on the whens, wheres, and whos. I hope he learns this lesson, too. He is valuable. He is funny and smart and quite the little character, we don't think it because we must...we think it because it is absolutely true.

There are parts of him, too, that I don't recognize...the perfectionism, the competitiveness, the way he wakes with the sun, and more; but so much of him, more than I can list here, is also me...I see now. I take one last long look at my little reflection and he smirks up at me, probably about to say, "You're crazy, Mom." and then I ruffle his hair and stick my tongue out at him. He rolls his eyes in a way that says, "Geez, you're so embarrassing." We both smile our big smiles and go back to studying our fingers, our feet still swinging in sync beneath the pew.

Thursday, August 14, 2008


The box is blank.

The cursor blinks.

I sit.

I type.

I delete.

The kitten climbs into my lap and pounces on the keyboard.

I start.

I stop.

I start over.

I stop again.

KayTar needs more Pediasure, BubTar needs a snack.




I walk away.



Board games.

Phone calls to his school, her school, my school.

More calls to the insurance company and mechanic.

Emails to the pediatrician.

I sit again.

The cursor mocks me.




And the box is still blank.

Wednesday, August 13, 2008

Wordless Wednesday: The Chair


Six Months

One year

Two years

Two and a half years

Three years

Almost three and a half years

Tuesday, August 12, 2008

Tiny Uniform Tuesday*

*Yes, I did make it up for the sole purpose of posting these photos.

Sunday, August 10, 2008

Coffee and a glass of water, please.

On Friday, BubTar and I spent the morning together while KayTar was in camp. I had errands to run and I thought we'd have a little fun together along the way.

The first stop we made was breakfast at a local diner. The waitress asked what I'd like to drink and I said, "Coffee." It was breakfast, after all, and I do love a good cup of coffee. After much indecision, BubTar settled on the chocolate milk. When our drinks arrived, and I looked down at that ceramic mug, it hit me. I am a grown up.

I have been married for seven years, a parent for six years, and a home owner for four years. I am, and have been, by all accounts (except perhaps age) an adult for quite a while, but somehow this single cup of coffee confirmed it.

I suppose we don't eat breakfast out very often, because we aren't really morning people in this house. I'm sure if we did make a habit of eating breakfast out of the house I'd have passed this particular milestone much earlier, but I hadn't. So here I sat, twenty-five years old, with a cup full of adulthood staring back at me. You see, I don't order coffee at restaurants, PARENTS do that. I order juice or Sprite or hell, even alcohol...but never a mug of coffee.

With each clink of the spoon, each trickling refill, each tearing of a sugar packet, I heard it...the echo of adulthood. Soon, I was distracted from my internal monologue when my son began crawling on the floor under our table and I heard myself say, "No sir. We sit in the booth, not on the floor." It was that sort of reflexive grown-up admonishment that bypasses my brain completely these days and I realized, I've been an adult all along, it just took seeing my reflection in a cup of diner coffee to finally realize it.

My partially canine breakfast date. (taken with camera phone)

Friday, August 08, 2008

She steals the show, she does.

Today was KayTar's final camp recital for the summer. They did a little dragon slaying play (and she had basically the only line in it) and then she sang a little solo of Twinkle, Twinkle Little Star and my heart exploded in my chest and tears leaked out of my eyeballs. Enjoy the show. (you might want to take camera is a LEETLE shaky) She's the one who is perpetually saying "HI MOM! HI MOMMY! HI MOM! HI BUB! HEY MOMMY!" That's my girl!

The end of summer

That was fun, wasn't it? In fact, if there was a place online where I could go for the sole purpose of reading about your lives each and every day, I totally would. Oh, wait...that's kind of the arrangement already, isn't it? Fancy that.

Today is KayTar's last day of camp.

Next week is BubTar's last week of summer. He starts on the 18th. He's going to be a first grader!

The following Monday, my semester starts. I'm taking evening classes once again, because after that hospital trip I realized she will probably be spending a good chunk of time under the weather, and if I take day classes no one will be able to watch her so I don't miss classes. At least if I take classes in the evening, he can handle all minor illnesses and I won't miss so much. 4 nights a week I'll be in class from 6-10.

On Tuesday of that week, KayTar starts school. My little baby girl, in SCHOOL. I ordered her uniforms yesterday. Tiny toddler-sized uniforms!

She also has to restart therapy. PT 2-3 times per week, so says the script from orthopedics. We're going to restart OT at the same time, which means she will have therapy 4-5 afternoons per week, outside of school. Our ortho appointment was kind of a non-event. It went sort of like this:

Dr. Ortho: (after her exam) I think she needs to be referred to a neurologist.

Me: Oh. She has one. She sees Dr. Neuro over at the Blah Blah Clinic.

Dr. Ortho: It seems like her orthopedic problems are neurological in origin, I think we should order an MRI.

Me: Oh. She's had one. She has a sprinkling of small lesions in her brain. It presents like CMV, but she doesn't have calcifications on the CT and they didn't find the lesions early enough to do an accurate CMV test, so we don't know.

Dr. Ortho: Ahhh, that explains that. I'll write her a prescription for PT and we'll just keep an eye on it as she grows.

The End.

The one time I really, really wish she had some sort of one word diagnosis is when I'm trying to explain her to new doctors. It can be exhausting. I have to say LOTS OF WORDS, and then sum it up with, "Well, we don't really know." I'm thinking of putting all her symptoms on a little laminated card so I can just hand it to them when they ask about her history. Then I can just say, "Here, let me know if you have any questions." Although, I kind of doubt I can fit it all on to a tiny little card. The good news is, she doesn't need orthotics or braces! The bad news is, we're cramming A LOT of PT into our already bulging fall schedule.

KayTar is also going to continue her art/dance/music classes at her day camp facility on Saturdays this fall.

Our weekdays will be something like this:

7:55 Take KayTar to school.
8 am Take BubTar to school. (different schools)
8:30-10:30 Spend 2 hours studying. Or cleaning. Or blogging (let's be honest).
11am Pick KayTar up from school.
Between 11-2 Go to Therapy of the Day.
2:30 Pick BubTar up from school.
3-5pm Snack time, homework time, quality time.
5 pm Josh comes home.
6 pm Kyla goes to school.
10 pm Kyla gets home; shower, rinse, and repeat.

On the weekend, KayTar will have Saturday classes, and we've talked about church a lot recently, which will take up a good chunk of Sunday. I'm also kind of looking for an overnight weekend job, which, if found, will promptly take up the remainder of the weekend...those pesky empty hours reserved for sleep.

Toss in a few episodes, the inevitable illnesses KayTar will get from being in school for the first time, some specialist appointments, and the other general drama of the Tar household and you've got yourself QUITE an exciting semester on your hands. Or rather, on my hands.

Fall 2008, the semester that promises to swallow me whole.

Tuesday, August 05, 2008

So, tell me about 25.

I have this thing about stories, stories from other people's lives. I could sit and listen to someone tell their personal tales for hours on end. It is an extension of people watching really, a deeper version. You don't just see how someone moves in the world, you see why they move in the world they way that they do. It is eye opening. And probably why this blogging thing draws me in the way it does.

And so in (belated) honor of my 25th birthday, humor me and tell me a little about YOUR twenty-fifth year. The whos, whens, whys...the music, the movies. Where did you live, who did you date, what was your job? Any of it, all of it. Leave it in the comments, no gift wrap necessary.

Me, 24 years and some months ago.

Saturday, August 02, 2008

She doesn't look sick, does she?



We have the top picture in a collage frame here at the house. As soon as KayTar was all hooked up in the ER she said, "Take my picture! Like in the frame at OUR house!" It kind of made me chuckle that she both remember the photo and the situation and place we were in when I took it. I had to make due with my pitiful camera phone, though.

In both photos, she is very dehydrated and her glucose levels are in the toilet. Most kids look like death warmed over. She? Looks like she was probably just jumping on the gurney. And she probably was. It just doesn't effect her the way it affects a typical kiddo. She continues to look well enough on exam, even when she's in a bit of trouble internally. Of course, I explained it to the nurses and doctors, but they still always look shocked when they get the labs back and compare them to her cheerful demeanor.

It's funny, after comparing the photos I realized she is wearing pig jammies both times. It makes me think maybe I should just stop buying pig pajamas. Bad juju.

She is such a different kid now than she was then, though. She was almost completely nonverbal then, she largely signed, sometimes in conjunction with sounds. She was not quiet for a MINUTE this time. I felt horrible for our roommates in the ER because of the constant chatter and party-like attitude. Their little poor baby was getting cathed and having blood drawn and my kid sounded like she was trying to gurney surf and throw a house party, despite her pitiful status. On the way to our new room the transporter said, "She sure has a lot to say, doesn't she?" because she commented on everything. "Oh, I like those stairs. Look an elevator. It is BIG. Number! Buttons! Look at the window. We're in the CITY. I love the town and city, Mommy. Where are my shoes? Look at your pretty shirt! I have my blankey. And bunny. Look at the floor. The wall is blue! Oh! Fishies! Look, Mommy, look! Are we going up? Are we walking? We're walking, Mommy! I see that sign! Are you carrying me? Is that my I-B? Look at my straw, in my hand. My hand is very DRINKY. It likes to have water in a straw. Mmmmm, so good water. In my hand!" and so on. And on. And on and on and on and on and on and on.

While we were in the hospital, she pretended that her IV arm was her "power hand" and we would bump fists and she would then shout things like "Power! YOU ARE A FIRE BREATHING DRAGON!" and then I'd have to be a fire-breathing dragon or a dinosaur or rocket ship. She only liked to bump fists with my left hand, though, because that is that hand with the "power gem" (my wedding ring). I accidentally used my right hand once and she said, "NO! IT DOESN'T WORK! USE YOUR POWER GEM! YOUR POWER GEM!" How could I make such a SERIOUS mistake?! They are going to take away my superhero license for sure if I pull that again.

I think that she's going to be just fine. The illness itself has passed. Yesterday she had spotty diapers and intake, but it was good enough. I expect today to be even better. WHEW. She surely keeps us on the edge of our seats, this rollercoaster ride of a child we've got.

So this is what happened...

Last Saturday, KayTar had an episode. On Tuesday, KayTar had a mini-episode. Tuesday, she also started vomiting in the night, she continued to vomit all day Wednesday. She was running fever, lethargic, the whole deal. She didn't keep anything down until about 3, and even then it was only a couple of ounces, 2 ounces to be exact. She had her last wet diaper at noon. She slept from 3-7pm and when she woke up, she was in an episode, and still very sick. The episode ended about 8:30, around the same time her fever broke. I talked to our pediatrician and she said if she didn't have a wet diaper by midnight, we would need to go in. Between 8:30 and midnight, we got KayTar to drink 4 ounces of Pediasure and eat 1 jar of green beans. Still no urine, but we thought it would be a matter of time. The pediatrician let us stay home for the night, since she had taken in fluid. She threw up in the night again, everything she'd had from the looks of it. Still no wet diapers. I made arrangements for BubTar to be taken care of, got ready, and headed to the hospital at about 10:30am.

I was just SURE she would wet a diaper on the way, because isn't that how it works? You get all panicky and react and then BAM, they prove you wrong, usually in public. But no. She's didn't. We were triaged and sent back very quickly. At that point we were at 23-24 hours without a wet diaper. She looked good, though, playful and happy. That KayTar, she looks like she's doing fine even when she's not. It makes exams kind of worthless in situations like this. They hooked her up to the IV, explained it to her (a straw for her hand to drink, because it is SO thirsty!), and it went easily. She didn't cry at all, she just said, "EEEEK!" when they poked her. It was such a different experience being there with her now that she is verbal. It made it easier on all of us. The worst of it was the throat exam and strep screen (which was negative). We were in the ER until about 4pm and then we moved to the observation unit. She finally peed a little after 6pm. 30 hours. And 4-5 of those hours she was actively receiving fluids. There was just no way we could have made up that sort of deficit at home.

She seemed to be doing okay in the obs unit and we even started her refeeding diet. The Pediasure they had at the hospital was entereal, you know, the less yummy kind meant to go right into the tummy, skipping the mouth altogether? She did NOT go for that and promptly decided Pediasure in the hospital was UNSAFE. And even when they brought her something else to try, she wasn't going for it. Josh brought her Pediasure from the house, let her read the label to be sure it was the Good Stuff, and she took about 4 ounces. She also ate a few bites of a jar of chicken and chicken gravy baby food. Man, that stuff stinks. BLECH. I had only eaten 1 pack of those powdered sugar donuts that I bought off the coffee cart and lots and lots of coffee, so when the boys got to the room, BubTar and I went to get some McDonald's from downstairs. Healthy? No. But it was open and it was more filling than those tiny donuts. It was DELICIOUS if you're wondering. Then the boys left and KayTar and I borrowed some videos from the library (Blue's Clues and Bob the Builder) and watched TV until she was sleepy enough for me to attempt getting her to sleep. It took a little while, a few rounds of "I want to go home. I want my BubTar. I want to sleep in my OWN BED." before she settled in, but she did. Then at midnight, she threw up. MAN! DID SHE EVER! It was curdled Pediasure and that disgusting meat jar food. It just kept coming out of her, covering her, the bed, the floor, even my socks and pants. The nurses decided just to bring in a whole new bed because it was so yucky. Poor girlie was so exhausted, she fell asleep while vomiting. I was holding her up and her head was lolling around pitifully. We got her cleaned up and the rest of the night went pretty uneventfully once they started the Zofran drip.

Friday went well. We started her on Sprite, which she drank a couple ounces of and kept down, and then we attempted a few ounces of Pediasure and she seemed to do okay. I was still endlessly nervous about bringing her home, as she seemed okay the previous day too and her intake wasn't up to snuff, even for her...but the pediatrician and the floor doctor were encouraging and I really wanted a shower and clothes that didn't have vomit on them, so we decided to give it a shot at home. Her fluid tank was full and so we had some time to get her intake up to snuff.

She took in about 13 ounces on Friday and didn't vomit in the night. Yesterday, she took in 27 ounces, plus two jars of baby food. She hasn't had anything yet today, and she hasn't had a wet diaper since 11 last night, but I think she'll have something in a bit and that will work itself out. It is times like these that make her oral aversions and feeding problems a real struggle. On a good day, a healthy day, sometimes she won't take what she really when she is sick, it is really amplified. The doctor in the ER couldn't get her to say "Ahhh!" without it making her gag. Yesterday, BubTar touched KayTar's cheek and it induced gagging. Her senses are on high alert and we have to tread gently, silently willing her to drink, drink, drink. I think she's over the hump, I really do, but the diaper that has been dry for 10.5 hours makes me worry, just a bit. So as I continue to watch her closely, jotting down every diaper, every sip, every bite, I silently hope that not only am I documenting the past, but somehow, in doing so I'm also urging the future into existence, a future of full tummies and lots and lots of wet diapers.

Friday, August 01, 2008

Happy birthday to me.

We're home from the hospital, where we have been since Thursday morning.

She still isn't 100%, or near 100%, but the pediatrician and the doctor at the hospital kind of let me decide if we wanted to be admitted to medicine or give it a go at home. Our pediatrician is on call this weekend, so if we have to go back in because she still isn't eating or drinking (which is her current stance on the issue), it will be an easy process. But, KayTar is ahead of the game because they pumped her full of fluids for over 24 hours, so we have a little leeway if she keeps refusing, at least enough time for a shower and a night in our own beds. So I said, "YES PLEASE!" because it is my birthday and at that point the only thing I wanted was to be in clothes that hadn't been puked on yet, unlike the ones I had been wearing for well over 24 hours. Actually, that isn't really true, pukey clothes and all, it was kind of an agonizing decision to make and I hope I made the right one for her. I'm still pretty worried about how tonight and tomorrow are going to go, worried about the possibility of a return to the hospital. But for tonight, my birthday night, I'll at least get to sleep in my own bed and that sounds pretty good to me. Hopefully a night in her own bed will be good for KayTar, too.

Oh, and in case you are wondering? It took her just over 30 hours to finally wet a diaper, and 4-5 hours of that time she was hooked up to an IV, receiving fluids, and still not peeing. That KayTar, she likes to do it up big. Boy, does she.

Home again, home her complementary "princess dress from the hospital" or so she says. Also, I noticed that she's giving me the finger. I probably said something like "Why don't you drink some Pediasure?" as I was taking the picture, and well, you can see what she thinks of THAT.