Wednesday, January 31, 2007

Nothing much

KayTar is better. Well, KayTar is MOSTLY better. She is not vomiting all the live long day, and she is not refusing to eat or drink, and she is not feverish. She is, however, vomiting once a night. She is having coughing and gagging fits in the night and generally they end in vomit. Sometimes it is right after she falls asleep, sometimes it is at 3am. Its definitely not a crisis, just a bit of a bother. I'll mention it to the pediatrician, but I am giving her the rest of the week off, unless something demanding immediate attention occurs (read as non-stop vomiting and/or an episode). She is so understanding and takes such wonderful care of us, I just want to give her a little break from the constant questions and concerns we have. A little vomit can wait a couple days. Its probably just residual from the illness she's recovering from. By next week, there may be nothing to mention at all.

This is a sorry excuse for a post. I know this. You know this. I can't really help it. I have posts percolating in my mind, they just aren't ready yet. I felt the need to update, because I left the blog on a "I think we're all better, but I'm not really sure." kind of note, and I didn't feel comfortable leaving it like that for too long.

I'm hoping that a little cuteness will make you forget the lame nature of this post.

KayTar learned to say "No!" right before she got sick. When I pulled out the camera in the hospital, this is how she responded:

It also works if you ask yourself "Was this post lame?" and then hit the play button. KayTar will clear up any doubts you might have. :)

Sunday, January 28, 2007

Out of the Woods?

We had an excellent day yesterday. 10 ounces of fluid. 3 wet diapers. 2 jars of food. 1 yogurt. No fever. No vomit. No episode. This morning? No fever. A truly wet diaper. Finally.

This whole scary week has been a reminder that our lives are very different than they once were. A reminder that KayTar's sensory quirks are not isolated issues, but they come into play in a way that can be very serious when combined with an illness. A reminder than when BubTar brings home a cold, it can end up being much more serious if and when KayTar comes down with it. The fact that she feels under the weather ramps up her food aversions and it turns into a total refusal of all foods and most liquids.

For most of the week, we haven't even been able to open food packages in the same room with her, much less eat in front of her. If she even saw us open a package, she would start heaving. It is so surreal. I've never seen anything like it. In the hospital I had to hunch over my food tray in the corner, so she couldn't see the food or the fact that I was eating. There is no tempting her with "treats" because sensory aversion trumps a treat every time. We tried everything. Popsicles were evidently invented by the Devil, just for torturing KayTar. Gatorade? No. Sprite? No. Water? No. Juice? No. Milk? Vomit. Big cup? No. Straw? No. Bottle? No. Syringe? Vomit. So a simple cold can become a hospitalization for dehydration, just because her senses are on high alert and she can't accept anything. We also learned that KayTar does not look as ill as she is in actuality. She can pass a clinical evaluation with flying colors, but the labs will tell a very different story. The general signs of dehydration were not exhibited, even though she was. She was still able to make tears, her tongue never felt dry, she passed the little pinch test. The only thing that gave us a clue was decreased urine output. It was quite a learning experience for us all. We're still unsure why she has had 3 episodes since Sunday. We've never had them closer than 2 weeks.

I know there are so many parents and children out there dealing with much larger medical challenges, some are life threatening and will be a life long struggle, and this is small in the grand scheme of things. I just didn't realize until this week that KayTar's sensory quirks could translate into a real medical problem.

Taken a few minutes after her labs were drawn.

Does this kid look sick to you?

Saturday, January 27, 2007


*Please excuse the fact that I am IN these photos...looking rather like I feel as of late. That is to say, sleepy, messy, and sickly. But I am never privelege to these sweet types of cuddles, so these pictures are golden. She was patting my back while we snuggled. My heart has grown three sizes!

In and Out, Up and Down

8:45am Wet Diaper
8:45am 103.1 fever
8:45am 1 tsp Motrin
9:20am 103.0 fever
9:20am Lukewarm bath
10:00am 102.0 fever
11:00am 100.4 fever
11:30am 2 oz milk
1:45pm Slightly wet diaper
4:30pm 1 tsp Motrin
4:45pm 2 oz milk
5:30pm 1 oz milk
6:30pm 1 oz milk
7:00pm Dirty diaper, but totally dry
7:00pm 2 oz milk
9:15pm WET DIAPER!
11:00pm Vomit
12:00am Sleep

How was your day?

I'm sorry I've been such a one way blogger as of late. I just come here and whine about life and leave you all with nothing. We saw the pediatrician today. We are still teetering on the edge of another hospitalization. We are back to where we were on Monday. Tuesday we ended up in the ER. Every time we gain a bit, it is snatched from us. If her diaper is dry in the morning, we will have to go to the hospital. If it is wet, we gain 10 more hours to try and coerce her into drinking.

Thursday, January 25, 2007

The Anatomy of a Jinx

On Thursday, maybe your wonderful thoughtful pediatrician emails to check on your sweet girl, because all has been so quiet lately. You assure her "Everything is GREAT!". Yes, you actually said "GREAT!". Yes, in retrospect, you realize you were asking for it. That night, your son's fever that had resolved itself mysteriously spikes. 103.5.

On Friday, you call for a pediatrician appointment for your sick son. Your son has Strep, he gets a prescription and you are on your merry way. You and the pediatrician laugh about the fact that as soon as she emailed you, you had to come in the office anyway. You start the boy on his medication and he feels better in a matter of hours.

Saturday and Sunday go swimmingly, your son feels better! You think "Whew! After a week of constant night waking, we will finally sleep!" You are wrong. Why did you even think that?

Sunday night your sweet baby girl has an episode that starts at 10 pm. There is much crying and vomiting involved, and very little sleeping. You go to bed at 5am. Your son, who feels wonderful, wakes at 7am. Your baby wakes around 8am, running a high fever. She is still vomiting. She refuses to eat and drink. You call the pediatrician again. To the office you go. Your baby hates the nurse and the doctor. She can't stand for them to be in the room with her, even if they aren't touching her or looking at her. This is the first time that you've realized that she now officially has a medical phobia. Or maybe she's really pissed off. You and the pediatrician talk to each other OVER THE SCREAMING. The pediatrician gives the baby a prescription, because her Strep test came back positive. She also sends you one for your husband, because he is at home with a migraine and a fever, most likely from the same lovely Strep. She also gives you one for yourself, just in case the Strep gets you too. You rush home, because it is almost time for your son's very first preschool performance. Your mom has kept him all day because you were at the doctor and your husband was so very ill. She got him ready for the program and took him to the school. You drop the baby off with sick husband, drop the prescriptions off at Walgreens, grab food in the McDonald's drivethrough, and shove your snack wrap in your mouth as you rush to your son's school. You make it in time!! The program was wonderful, and you definitely have the cutest 4 year old on the planet. After the program you go back to McDonald's because that cute little 4 year old deserves a treat. You go back to Walgreen's and pick up the prescriptions, and rush home. Medication is given. The baby throws up immediately. She has only drank 1 oz of fluid since you left the house. Her fever is climbing.
Still not drinking.
Won't keep medicine down.
She's peed twice all day, but the diapers were barely damp.
It is 12:30am. You call the nurse. She tells you to give the baby suppositories and a lukewarm bath. The fever goes down to 102. Your baby still won't drink. It is now 4am. Everyone goes to sleep.

In the morning, the diaper is dry. Your baby hasn't peed since before 2am. She refuses her bottle. She refuses a cup. She refuses a dropper. She refuses a syringe. She accepts a sport bottle with water. Drip. Drip. Drip. Fluids go in, oh so slowly. She vomits everything up. Drip. Drip. More fluids. More vomit. No urine. The pediatrician keeps in touch, checking on her through the day. She says, "I don't want to send you in if you think you can get some fluids in her. Call me if it gets to a point where you think it won't be possible." After the third intake/throw up incident, you call. To the ER you go. 12 hours with no urine is too long, especially when she won't accept any fluids.

The ER is more full than you have ever seen. When you get to triage, you find out there are 89 people waiting. Luckily your wonderfully amazing pediatrician called them, so you get bumped to the front. You wait an hour before getting a room. The baby cries every time a doctor or nurse even walks by her. The blood pressure guy gives her his glasses so she will calm down for him. She loves the glasses. He has to leave and take the glasses. There is much weeping. Your wonderful pediatrician comes to check on things. You are amazed by how amazing she is. She makes sure the doctors are up to speed and they agree on treatment. They give your sweet girl an IV, but it blows and they have to repeat it. Your dad leaves because he can't stand to see babies in pain. He can hear your sweet girl screaming all the way across the ER by the elevators. She has never been this angry. She is clawing at the IV and trying to shake it loose. Later, she gets a shot of antibiotics so you don't have to worry about getting anymore into her. She screams anytime anyone comes in the room for anything. She dozes off, finally. They decide to keep you overnight. When you get to the new room you get her lab results. She is sicker than she looks. Her glucose level is at 30 and normal is 70-100. Her CO2 level is at 12 and it should be at 30. And so on. They push some dextrose for 30 minutes. Then 30 minutes after that they have to come poke her again. The level is normal. Around 4am, the both of you fall asleep. At 7am you wake up for rounds. The pediatrician comes to check on you. She wants to you stay the day and get fluids, because your girlie was in such bad shape. They recheck her labs at noon and say she's looking good. She perks up around 4pm and stops screaming every time a nurse comes in. She even smiles a little and lets the nurse look at her animal flashcards. She giggles when the nurse says "Moo!" You've turned a corner. The doctor lets you go at 7:30pm.

On the way home, your sweet baby falls asleep in the backseat. She is so tired. When you get home, she wakes up and opens her eyes. You are sure she'll want to play when she gets home, but when you turn on the lights her eyes close instantly and she cries. Episode? You rush her to her dark room and lay her in the crib hoping she will go to sleep quickly. She does. You do, too. During the night, you hear your husband whispering to you from the rocking chair. He is rocking your sick baby. She threw up on him. The light is intensely bothering her. Episode. He is able to rock her and get her to sleep. Her body is so tired thay even the episode can't keep her awake. You are thankful.

In the morning, she wakes with a 102 fever. She is refusing liquids. You are running fever. You don't have time for fever, so you are popping Motrin like candy and drinking coffee like you SHOULD drink water. You are worried. If your baby won't drink, then you're going to end up back in the ER. Your baby has no more hands for an IV. She was so unhappy in the hospital. You are so tired. You want sleep. Sleep. Sleep. Sleep.

How did this begin? With an email to see if all was well, and your assurance that "Everything is GREAT!".


Can I buy someone a coke and have this be over?

Playing with Daddy...finally smiles!

Leaving the nurse a thank-you note.

Wednesday, January 24, 2007


Home. Tired. Will update tomorrow. Goodnight.

Tuesday, January 23, 2007

Off to the ER...

Ms. KayTar is is a long and tiring story involving her episode, strep, a 104.5 fever, vomiting, two sleepless night, Josh getting pulled over by a police officer, suppositories, Kaytar's refusal of liquids, and a lack of urine for a significant amount of time. So I shall be away for a bit. I promise an update when we are home again.

Monday, January 22, 2007

Woe is Me

It is 12:43 and I'm drinking coffee.
KayTar is having an episode.
It began at 10pm.
It should end around 6am.
She is throwing up on and off.
I am so sad for her.
I wish I could help.
She is also hot with fever.
That means BubTar gave her strep.
Josh is sleeping on the couch.
He is hot with fever.
That means BubTar gave him strep.
I am surrounded.
The Strep is coming for me.
KayTar is so sick.
I am so tired.
Where are the answers?

Saturday, January 20, 2007

Week in Review

Monday: Nice relaxing day at home with Josh. BubTar goes to school. Comes home and spikes a fever.

Tuesday: BubTar stays home and runs a fever. Therapy.

Wednesday: Josh's dad passes out and goes to the ER in an ambulance. BubTar is still miserably feverish and at home.

Thursday: Genetics, we all know how THAT went. BubTar's fever is gone, but we still let him spend the day resting at Grandma's house. His fever spikes again in the evening. Josh's dad is released, but they do not know what it wrong. He is stable and feeling better, so we are thankful. His roommate was an older man who pooped in a diaper, so Josh's dad is thankful (for some fresh air). :)

Friday: Take BubTar to the pediatrician. Find out one of his lymph nodes is horribly swollen. Find out this is the lymph node that is known for swelling up during mono. BubTar gets a strep swab and a mono spot. Thankfully, the strep is positive and the mono is negative. Did I just say I'm THANKFUL for strep? *sigh*


PS: Sorry for the hit and miss commenting this week. I don't think I've read all the way through my Bloglines once. But this weekend I shall!

Thursday, January 18, 2007

Genetics Appointments-101

Today was genetics. Good Lord, they make you wait 6 months for an appointment and then they make you wait for what seems like even longer during the appointment. For those of you who haven't had this special treat, I'll give you a brief overview.

Step 1: Wake your child several hours before she usually rises from dreamland. Realize that this starts the day on the wrong foot, because your child does NOT appreciate this gesture.

Step 2: Drop of sick child at your mother's house, because he is still too ill for school.

Step 3: Drive a half hour in morning traffic made worse by the wet, slippery roads.

Step 4: Park, grab breakfast, go to the waiting area.

Step 5: Greet the nice volunteer who comes over to do nice things with your child like coloring, reading, and building with dominoes. Feel sheepish as your child makes it clear that NOTHING IS ALLOWED ON HER CHILD-SIZED TABLE by tossing each item to the ground....even if it is in the nice volunteer's hands. Feel more sheepish as your child shreiks if someone tries to clean the floor, snatches items back from the cleaner, and throws the items back onto the floor WHERE THEY BELONG!

Step 6: Wait in the room for roughly 30 minutes for the doctor. Pull out every trick in the diaper bag. Make sure she is very bored by the time the doctors arrive.

Step 7: Greet the Fellow and the visiting doctor from Canada (woot! Go Cananda!). Sit and give detailed histories, to which they largely nod and say things like "Oh yes, we read this in her chart." which makes all of this talking seem very pointless, especially because your child is acting like a spidermonkey on crack.

Step 8: Talk some more.

Step 9: Talk. Some. More.

Step 10: Shake hands with the Fellow and Dr. Cananda as they leave to go to the big meeting. (this is the point where they leave to talk to the geneticist behind your back)

Step 11: Go back to entertaining your cracked up spidermonkey...I mean, child.

Step 12: Keep entertaining.

Step 13: Go to the toyroom. Try and discourage your spidermonkey,err, child from stealing the one toy that the one other child in the room is playing with. Be very thankful this child seems to be a big sweetheart and allows your child to rule the playroom with her tiny iron fist.

Step 14: Leave the playroom when a doctor comes to talk to the other parent.

Step 15: Let your child take her walker for a spin to buy some more time.

Step 16: Console your child when her "friend" from the playroom walks down the hallway and disappears and she dissolves into sobs.

Step 17: Wait. Wait. Wait.

Step 18: Repeat Step 17.

Step 19: Repeat Step 18.

Step 20: Repeat Step 19.

Step 21: Sit and nod as the geneticist, Fellow, and Dr. Canada tell you many, many things...of which you will not remember any of moments from now.

Step 22: Nod as they say things like "We're going to run some tests, but they only allow us to take SO much blood from a child, so we're limited." (eek!) and "After we get the labs back, then we order a SPINAL tap." ( triple eek!)

Step 23: Nod as the geneticist says, very excitedly, "We could have an answer for you in a year!" like it is good news. Inwardly roll your eyes and beat your head into the wall until you black out.

Step 24: Listen as he explains that they will have a big meeting with all the geneticists at the hospital later, at which they will all review your child's chart, throw out differentials, and request further testing.

Step 25: Shake hands, say "Thank you. Nice to meet you."

Step 26: Say thank you to the nurse who puts a pee bag on your darling child, who is not very pleased.

Step 27: Head down to the lab to get 8 vials of blood from your now exhausted child.

Step 28: While waiting in the lab, say hello to the phlebotomist that remembers you from the last time your child left tiny shoes print in her shins while having blood drawn. Smile as she says, "Oh! I remember you! It took three of us and two sticks to get HER blood!" before she rushes off to warn her coworkers.

Step 29: Feel thankful when you find that the pee bag runneth over...because its better than a cath.

Step 30: Feel more thankful when the nice phlebotomist has a plan of attack for getting the blood in one stick. Laugh as she says "Now if we only had the Mission Impossible theme playing, everything would be complete."

Step 31: Be ECSTATIC when it only take 1 stick!! 1 stick! Never has this happened! Dance around the room with glee!

Step 32: Tell the phlebotmist she is your hero and that you will most likely see her soon.

Step 33: Grab lunch in the cafeteria.

Step 34: Let your child nap in the car for 15 minutes, ensuring that she will not get a good nap for the entire day.

How long does it take to go through steps 1-34? 6 hours.

To sum up:

Wednesday, January 17, 2007

Still sick.

Last night, I went out to a movie with friends because it had been planned for a while and Josh assured me he'd hold down the fort. I returned home around 12:45 and he told me BubTar was in our bed and his fever was jumping around. I asked if he'd had any medicine and Josh said, "I don't know what to give him." So I took his temperature (102) and gave him Motrin. Josh volunteered to sleep on the couch so that BubTar could have me all to himself. Evidently waking him up at 1am for medicine and adding a slumber party with Mommy into the deal wasn't a great idea. He talked to me almsot all night long. For some reason, fever makes him extremely excitable and animated. It is incredibly adorable. I don't know if he slept at all, I just know the last time I looked at the clock was at 3am, whether I got to tired to hear him anymore, or because he fell asleep too. He woke up (or was still awake at) 6am...I told him it wasn't morning until Daddy got ready for work, which bought me another hour. Once Josh woke up, he turned on our bedroom TV to PBS and I slept some more while BubTar cuddled in next to me watching cartoons. We had a low key day. KayTar had therapy, but largely it was all cuddles and naps and lazing around. BubTar's fever is still hovering around 102 and he went 14 hours today without peeing, which made me concerned about dehydration. We played various drinking games tonight to try and encourage his desire for fluids. "Every time you knock down the block tower, you have to take a big drink." "Every time you say 'Momma' you have to take a big drink." and so on. Tonight he is stealing Josh's spot in bed again, but this time he will sleep more, I think...I hope.

There is something so comforting about this run of the mill illness. It feels good to know that this quiet worry in my heart is universally shared by all mothers. Usually my health-related worries are the kind others cannot easily relate to. Usually when I hold a sick child, it is KayTar and she is in unbearable pain. Usually the worry is so great it threatens to swallow me whole. But this time? It feels normal. I love waiting on BubTar, sneaking in cuddles, and pampering him. I love knowing that this is a situation that I know how to handle. I do worry about him, but it is a still and quiet type of worry. I know that he will be over this in a day or two and life will go on. In a world where so much is unique to us, it is comforting to experience something so common.

Here's the rooster hair Moreena was looking for. :)

Monday, January 15, 2007

A Model Citizen

As you can see, BubTar had a busy weekend of modeling. (He doesn't really model, if I've got you wondering by all of the joking about it, he just models for the Mama-razzi.) But today after school he came down with a cold or some other lovely illness and he is now lying on the couch resting with a 102 fever.

Doesn't he look pitiful?? I know. But as soon as I snapped these photos he popped up of the couch and said, "Can I see how my pictures turned out, Momma?" and when I showed him the viewer on my camera he said, "No, I need to see them bigger...on your computer, okay?" *lol* So he feels badly, but not too badly to worry about how his sickly photographs came out.

Sunday, January 14, 2007


Guess what KayTar did this weekend?


These are our first outings in which she "walkered". Yesterday morning we had a playdate at the park with one of her "friends". She had a blast crawling around in the dirt, but when it came time to walk to the duck pond, I pulled the walker out of the car. I had a moment of doubt, "Should I really get the walker out? Its such a short distance." but I think I was probably feeling a bit of the "Everyone will be looking at her." too. But it lasted only a moment and off she walkered! Honestly, I don't know if anyone did stare, because I was soaring with pride. Even when the walker would get stuck in a crevice, or when it veered (as it has a habit of doing) she stuck it out, she didn't get down to crawl once! Once we reached the end of the sidewalk, she crawled off into the grass to chase the birds, but she did it!

Today we took it to the mall, the pictures above are from Bass Pro Shop while Josh shopped. The girl can multi-task, can't she? Walkering AND drinking. Impressive. I think we need to install a cup holder on the walker. :) I was a bit more secure in our walker-dom today, and while we strolled around the store (slowly, oh so very, very slowly...I saw a pack of sea turtle pass us by) I looked up at met curious gazes. Most people smiled at me or winked at her. One little boy, roughly 3 years old, passed by and pointed to KayTar and said "Baby." and she pointed back and said "Bay. Ee." It was so nice to be able to get her out of the stroller and move around on her own. Later, when we were actually out in the mall corridor, we let her walker again. I didn't snap any pictures, because let's face it, a beautiful tiny child with a red walker moving at the rate of a snail is enough of a distraction to people without adding the flashing camera of the Mama-razzi. I did see lots of kind-eyed strangers out in the hallways, and a little boy said to his mother, "Look, I think she's learning to walk!" and pointed our way. We did turn quite a few heads, but let's face it, she's adorable! Who could resist checking her out with her spiffy new wheels? It was a good experience. I've learned two things:

1. The walker veers TERRIBLY to the left, and although KayTar does a magnificient job of adjusting it, it frustrates her to no end. If it wasn't for the veering, she might be keeping up with us at an almost normal pace.

2. She is easily distracted, and would for go following us in a straight line through the mall, to go gaze at a pretty red sign or check out the nearest trash receptacle. She was exercising her legs AND her free will today. :)

But we did it. We took her out with it and we let her experience the world on her own two feet. And I could not be more proud of her.

We are navigating in a world of the unfamiliar, and days like today reinforce that. There will be times people will ask me "What's the matter with her?" or children who aren't as kind as the little boy I overheard today. There will be eyes that are not so kind, and people who cannot see the beautiful girl because they are blinded by her walker. We will experience those moments, too. I'm still not quite sure how we'll handle them. I like to think we'll handle them with our heads held high and a smile on our faces. I like to think we'll have the right answer for the questions we are asked, both kind and not so kind. I like to think that I'll have the right respond for the people who say things that are unkind, especially as she begins to understand more. But until it happens, I'm not sure. But I do know that we will still be out there, walkering with pride, hopefully teaching people by our presence that it is okay to be different. There is a post related to this over at Christy's that I think is simply wonderful. I don't think it is wonderful because she happened to quote me ;); I think it is wonderful because Christy is a beautiful writer and she was able to encapsulate the feelings that you experience when navigating in this different world so perfectly.

I'd love to hear perspectives on this, whether you parent one of these special kiddos or not. What are the right responses in these situations? Is there a right response? If you have been through this, how do you handle these things? Please don't limit it to these questions, I'd love to hear any thoughts on the subject.

Friday, January 12, 2007

If you...

If you don't sleep all night, the baby will wake prematurely.

If the baby wakes prematurely, you will have to have two cups of coffee.

If you have two cups of coffee, the baby will fall asleep as soon as it hits your blood stream.

If the baby falls asleep when it hits your bloodstream, it will be time to pick your son up from PreK.

If it is time to pick up your son up from PreK, your mom will come over to watch the baby.

If your mom comes over to watch the baby, she will clean the dishes for your husband.

If she cleans dishes for your husband, you will pick her up lunch on your way home to say thank you.

If you pick up her up lunch on the way home to say thank you, she will have already eaten.

If she has already eaten, she will take the food with her and go home.

If she takes the food with her and goes home, the phone will ring.

If the phone rings, it will be the speech therapist.

If it is the speech therapist, she will ask to come early.

If she comes early, your son will be unable to control himself.

If your son is unable to control himself, you will ask him to lie in bed quietly.

If you ask him to lie in bed quietly, he will cry and cry.

If you hear him cry and cry, you will make him laugh with silliness and fetch his favorite book for him.

If you make him laugh with silliness and fetch his favorite book for him, he will snuggle in happily.

If he snuggles in happily, he will become quiet as a mouse.

If he becomes quiet as a mouse, you will check on him after therapy.

If you check on him after therapy, he will be sound asleep.

If he is sound asleep, you will want to take a nap.

If you want to take a nap, the baby will be wide awake.

If the baby is awake, you will drink 2 cups of coffee.

And repeat.

Sunday, January 07, 2007


Life comes easily to some people. They seem to naturally suceed in all areas. For others, life is a seemingly endless struggle. They never get ahead, it is tremendously difficult for them to even get by. I believe most people fall in the middle some place. I think the majority of us excel in one or two areas, and struggle in a few areas as well. In many cases, the difference in the two areas is slight. Perhaps you made straight A's in English courses, but in math, you never could make more than a B if you worked your very hardest. For some people, the divide is much greater than that. Watching KayTar develop has been quite the lesson in this area.

For a while, she didn't excel at anything. She was way below average in all her developmental areas. In retrospect, I still can't understand why we didn't see it sooner. We just thought she was taking her sweet time, I guess. When we switched doctors and began evaluations, it was striking how far below the curve she fell. But as we've travel this road, many things have become apparent.

Her brain seems to work differently than most people. Learning sign language seemed to flip a switch that had been in the off position for her entire life. She has a natural propensity for signing. Her therapists "Oooh!" and "Aaah!" over how well she's picked it up. Usually once a session she uses a sign they don't know and they exclaim, "Wow KayTar! You know more sign language than I do now!" She doesn't thrive the same way using her "words", though. Speech is used solely for naming objects and people. She doesn't use it to communicate wants or needs or hold conversations. Speech is not an area she excels in. But sign language? She has picked it up miraculously.

She has fixated on letters, she can identify almost all of them now when asked to do so (when she is feeling compliant). She is signing or saying at least half of the alphabet already. She is even beginning to connect the beginning letter sounds of words to the letter they start with. We are amazed by this ability! A child who does not use speech as her main mode of communication having such a natural knowledge of its workings is surprising! BubTar is a smart cookie (as shown by his report card earlier this week showing 100% knowledge of the things they have been taught this semester), but even he has just begun to learn these things this year in PreK. But KayTar just knows them.

She struggles so greatly with her gross motor skills. Her body just won't behave in the way that comes so naturally to most children. She can't stand, walk, run, or jump. She is almost two and has been left in the toddler dust in this area. But she is a beautiful artist. She hold her pens, crayons, and markers expertly and has for a few months now. She makes beautiful swirls and lines across the page. Her pictures often resemble a swirly flower garden. Most of her peers are still "scribble-scrabbling", as BubTar calls it. She thinks out each stroke it seems, "More detail here, less over there, and perhaps a touch more color right about here." She can build amazing block towers, exceeding the norm for 5 year olds. She can successfully stack up to fourteen blocks, and might be able to stack more if her arms weren't so short.

We all have strengths and weaknesses, but most are not so obvious as KayTar's. Watching her grow into herself is such a learning experience. We have gone through stages of sadness over the things she can't do or may never do normally. We have grieved over the loss of her "normal" life. We worry about her future, about how she will function in this world that so values sameness. We worry about the areas she struggles in. But then we are surprised by her natural excellence in some areas, and we breathe a sigh of relief. Some things do come easily to her. Some things will not be a struggle. She does shine and she will continue to shine as she grows. Maybe she will never be one of the people that life comes easily to, or maybe that gap between strengths and weaknesses will close and one day life will come easily to her. Either way, one thing we have learned is that anything is possible and that anyone can shine if they are given the chance. That is something we will remember forever, no matter who our sweet KayTar grows into.

Wednesday, January 03, 2007


I spoke with the neurologist. He had the results for her Familial Hemiplegic Migraine evaluation. Can you guess what they were? I confess, I may have used a bit of foreshadowing with the title of the post.

She DOES have a genetic mutation on the same gene that controls the calcium channels that would make this diagnosis a slam dunk...BUT it is not a recognized mutation. The mutation she has is "indeterminate". So basically, we have one more test that pats us on the head and says "Yes, you're right. There is something wrong." but gives us little more information.

The neurologist, pediatrician, and I got a nice chuckle out of this, because at this point we expect a non-specific result. We would be good and surprised if we got something informative back. They both agree that this means we're digging in the right spot, though. She is being switched to Topamax, so for the next 2 months we will be weaning her onto the medication. The doctors are also prescribing Zofran to be given at the start of an episode to control the vomiting.

If the episodes continue once we are on the Topamax, we will go in for further testing, just to be sure there isn't a new development.

Josh is currently on the couch with his head covered by pillows with a headache of his own. I hope the medicine works before it gets to be a full blown migraine. I need a break tonight!

A picture of my sweetness from last night:

We have gotten more than our money's worth out of the Baby Papasan. Not only did she love it as an infant, it makes a lovely "sick seat" for a toddler. :)

(excuse the mullet-esque hair, its normally not that bad *lol*)

Caffeine STAT!

We were up until 3am. I am tired. So very tired. BubTar went back to school today, so we had no choice by to be up and around. KayTar is resting in her crib with a bottle (rehydration in process), and I am about to have a second cup of coffee and relax on the couch with the issue of Wondertime I just received in the mail. I just wanted to let you all know KayTar is feeling better, the episode lasted 8 hours, and that I can be found vegging out on my couch for the remainder of the day if you're looking for me. :)

I will leave you all with a quote from BubTar:

The scene: I am cleaning his tushie after he used the potty.

BubTar: Do you see my little baby?
Me: No, I don't see a baby.
BubTar: My little baby POOP. IN THE POTTY. Sometimes I make a whole family, but this time its just a baby. *baby talk voice* My little baby poop.

I almost died. Can you imagine if he said something like that to his teacher at school? Dear Lord. *lol*

It is 12:36am, do you know where your episode is?

I am wide awake with the beautiful KayTar, who is currently mid-episode. It began at around 7pm. We had come home from the grocery store and she was playing in the living room. I noticed her start blinking strangely and squinting at the lights. I turned the bright ones off, but within 5 minutes she was on the floor writhing and screaming. We administered Motrin and Daddy took her outside to try and calm her. She fell asleep on him outside and he put her in her crib a while after. She slept for a half hour or so and then woke up vomiting. She has thrown up roughly 15 times since then. It is now lime-green bile. We are trying to get her to drink, but she doesn't feel up to it. She will allow us to squirt water from her bottle into her mouth for her, though. Josh and I are taking shifts squirting her. Luckily the pain is over, she is still light-sensitive, motion-sensitive, and vomiting frequently. Her last episode was 8 hours; going by that scale we are a little over half way through.

The pediatrician said if the pain becomes unmanageable, we can take her to the ER for sedation. I think we'll make it through from home tonight. She is calling the neuologist in the morning and we are likely switching to Topamax, which has a track record with migraines and seizures, and since this seems to be a marriage of those conditions, I'm hoping it works. A plus to this change, is that they can prescribe her Tylenol with Codeine for the pain. With her current medication, they cannot, because the medication is a sedative and they can't give her two. We might need further testing, but she is unsure. We won't know until she talks to the neurologist.

I just want my baby to feel better. I want her freed from this bi-weekly curse. We are managing, but she shouldn't have to endure this.

Tuesday, January 02, 2007

2006: The year in photos


KayTar takes a trip to the ER for RSV.

BubTar and KayTar are adorable.


KayTar turns 1!

BubTar and KayTar are STILL adorable.


KayTar pulls to a stand! (and there was GREAT rejoicing!)

BubTar begins a wildly successful career as a model.


BubTar turns 4! (while continuing his wildly successful modeling career)

BubTar and KayTar are adorable while vegging out.


KayTar has her first known episode.

BubTar and KayTar are adorable AGAIN.


KayTar shockingly learns to climb!

BubTar is chosen for the role of James Bond in 007:Preschool Royale

KayTar sees the new pediatrician for the first time.

BubTar's modeling career goes PUNK ROCK.

BubTar and KayTar cuddle on the couch, adorably!


KayTar rides a horse.

BubTar gets the role of a very young William Turner for an upcoming Pirate's prequel.

Still adorable.


Hospitalization for episode...EEG time!

BubTar starts school!

You guessed it, ADORABLE!


KayTar's first neurologist appointment.

BubTar takes a break from modeling and acting while starting PreK.


KayTar gets blood drawn.

KayTar gets blood drawn again.

KayTar has MRI.

BubTar takes his first plane ride.


KayTar becomes a rogue dental hygenist.

BubTar explores comedic modeling.


KayTar gets her walker!

BubTar gets a trampoline and Gigaball!

I realized that BubTar and KayTar have the same smile, and the year ends as adorably as it began.