Wednesday, February 28, 2007

The Juxtaposition of Spring (in two parts)

I know that the majority of people relish in the coming of March. It brings light and warmth back into their corners of the world. The cold darkness they've been living in becomes a little less cold, and a little less dark. There is finally light on the horizon; they will make it through. This year, I am not comforted by the arrival of March.

March marks getting back to the grind of appointments and testing. We've been on a bit of a hiatus and it has been glorious. While I won't go so far as to say life has been normal, I will say that it has been closer to normal than it has been in many months. February has been good for us. We've had the opportunity to live life, to make plans, to have fun together. We've been able to sit at home and do next to nothing. There have been stressful times, of course, but the pace has been slower. It has been refreshing.

Next week, we are finally going in for a new EEG. The pediatrician said it is possible that she had a seizure during the last episode, so it is time to get the new EEG. I know this has been coming for a while, I've talked about it several times, but now that it is actually a sure thing I feel a little anxious about it. Our options are either to be admitted next Monday and stay in the hospital until she has one (most likely next Monday or Tuesday based on the pattern) or to head to the hospital once one begins and go in through the ER and try to catch one. At first thought, we were sure we would go with option 2. Who wants to be in the hospital any longer than necessary, right? But now that it is a sure thing, I have second thoughts. KayTar is in such pain during these episodes, she hates movement and light and she vomits frequently. The hospital is thirty minutes away. We would have to get ready on the fly, pack her up, and drive to the hospital while she screamed in pain and vomited in the car. There is no way to keep the light out of the car or to protect her from the motion. Then we might have to wait in the ER for a while in the bright lights and noise while she writhes in pain. If it happens at night, we are out of luck. They cannot do the EEG at night. I have a hard time knowingly putting her through that. On the other hand, I don't want her to be cooped up in the hospital for days waiting for this to happen. I'm going to talk to the pediatrician more about it before deciding once and for all, but I think we might be in better shape with a hospitalization. At least she will already have a room and be comfortable when it does finally happen.

On the 16th, she has her follow up MRI as well as a spectroscopy. It is at 6:15 in the morning, so we will have to leave our house by 5am. I am so not a morning person. Neither is KayTar. With appointments like these, I just take what I'm offered because I don't want to wait longer to get it done. Its going to be a 3 cup day at least.

On the 28th, she has her sedated ABR. Her speech is coming along some, but we still have to rule out hearing impairment.

We are also adding an additional therapy to the schedule, feeding therapy. She had her evaluation yesterday and we return in two weeks. We have homework, including cheek stretches, trying (once again) to introduce a sippy cup, and trying to get KayTar to stick out her tongue.

Can't it stay winter just a bit longer? I'd like to stay here in the cold where frightening things like bears, EEGs, and MRIs hibernate, and the world is covered in a quiet, beautiful blanket of snow. Tomorrow the world begins to defrost and the sleeping beasts begin to wake from their quiet dreaming and spring to action, and we have no choice but to meet them head on.

The Promise of Spring

Spring brings not only warmth and light, but also the possibilty for answers. With the coming of spring, we will step back out onto the path of testing, but with those tests we have the hope of finding answers that couldn't be seen previously.

Next week we are getting a new EEG. I've mentioned this many times before, but it is definite this time around. We are still unsure how it will play out. I think that the most likely scenario involves the neurologist pulling strings to make an outpatient appointment once we call and let him know an episode has begun. I think this will make it possible for skip the ER portion (in which KayTar screams and vomits while breathing in the germs from all the sick people in the ER). I'm still not 100% about how it will be handled, but either way we will be having an EEG next week. I am hoping that somehow we can work it so they can catch one of these while it is happening. The last one left us a bit shaken, and we would love to have something solid to tell us what is truly happening in her brain while these events progress. We want answers and maybe a dash of reassurance.

On the 16th, she has her follow up MRI as well as a spectroscopy. It is at 6:15 in the morning, so we will have to leave our house by 5am. I am so not a morning person. Neither is KayTar. With appointments like these, I just take what I'm offered because I don't want to wait longer to get it done. Its going to be a 3 cup day at least. Once this MRI is done, we will have a much better picture of what the lesions are and how they came to be. The theory is that she had an infection in utero which caused these damaged spots, if we see that the lesions have gotten smaller or disappeared, this theory will be comfirmed. If they stay the same, an infection is still the most likely cause. If we see growth, then it is time to start digging again. The way I see it, we have the odds in our favor of this MRI bringing comforting answers. If there is no growth, chances are they will cause no further problems for KayTar.

On the 28th, she has her sedated ABR. Her speech is improving, but we still need to rule out hearing loss once and for all. Either way, this test will bring comforting answers. If she does have hearing loss, we will be able to step in and give her the extra help she needs. If she doesn't, it will be one less question to worry over.

We are also adding an additional therapy to the schedule, feeding therapy. She had her evaluation yesterday and we return in two weeks. We have homework, including cheek stretches, trying (once again) to introduce a sippy cup, and trying to get KayTar to stick out her tongue. While this additional therapy adds one more thing to the list of appointments, the benefits will greatly outweigh the time it might take from our schedule. This could not only help KayTar to overcome her texture issues, but we might be able to get her to a point where she is HUNGRY and wants to eat. We might at some point in the future, get to retire from the PediaSure club for good!

While spring will be full of tests and appointments for KayTar, it will also be full of hope. As tempting as it is to try and linger in the quiet, peaceful darkness a bit longer, we know it is not possible. Spring is here! We might have answers! We might be able to tuck away some worries once and for all. Spring is finally here, and with it comes the promise of answers. It has been a long dark winter of waiting and the answers might finally be ready to shed some light in all of this darkness.


I've done lots of tweaking with these two posts! At first it was only the first portion, but it came out a bit too melancholic for me, so I created the second post separately, but I didn't care for that either. Then I thought about scrapping them both, but instead I've combined them and I think I have a happy medium. Maybe. :)

Tuesday, February 27, 2007

Happy Birthday, KayTar! (part three)

She had a blast! She is STILL having a blast. I videoed everyone singing Happy Birthday, and we watched it 30+ times yesterday. She claps and yells "Yay!" at the end every time. Because icing makes her vomit, I got her two special icing-free cupcakes...but it turns out the tops felt too sticky, and she wouldn't eat them. In the first photo where she is pointing, she was telling Josh, "Remove this sticky-topped cupcake from my sight immediately, sir!" Other than that she had a wonderful time. Here is the amazing part, she walked ALL OVER that place. Seriously walking. Josh was right behind, barely holding her shirt, but she was doing it. I don't know if it was that there were so many new things that she stopped thinking about walking and just did it, or if the place has some magical powers, or what. It was amazing, though. I think we might have a through and through walker in the next month or so. I just can't believe it! Josh is so excited that she did so much walking that playing there once a week is now part of our "therapy" regimen. She is also obsessed with basketball. When we visit Chuck E. Cheese, she plays that basketball game in the big shoe until Josh can't lift her from the ground anymore...and at the party she stayed close to the basketball goal the majority of the time. She was even bending down and picking up the ball and standing again to shoot! Magic, I tell you!

Onto bloggy business, I have been remiss in my blog reading/commenting the past couple days. We had the party Sunday, and then yesterday KayTar suddenly forgot how to play on her own, and so the only time I was allowed on the computer was when we were listening to Laurie Berkner and Steve Burns on the Noggin website. I attempted to pull up my blogging window on top of the music videos, thinking maybe the music would pacify her enough, but she had to see the videos. Sigh. Today we have to go to feeding evaluation and also we have therapy this afternoon. I'm feeling ill. I had a full day headache yesterday, and then my throat started hurting in the evening. I must have had a very sore throat in the night because I dreamt I had blisters in my throat. Lovely, eh? And this morning it hurts much worse than it did before bed. I am hoping that it isn't strep. I do not feel like going through that again. How do I keep KayTar well if I am the one who is ill?? I guess I'll be using lots of Purell and hope for the best.

Hmmm, do you think Purell would be interested in sponsoring this blog? I sure mention it often enough.

Anyway, I will be by your blogs soon, I just wanted to explain the lack of visitation recently.

Saturday, February 24, 2007

Did I forget to mention this?

There it is. She's not actually WALKING-walking yet. Not the independent, I can stand on my own two feet for more than 30 seconds and then choose to walk to anywhere I please type of walking. But she is consistently taking up to seven steps between people. Then her balance falters. Balance is still her biggest issue. The therapist says she has excellent muscle tone and is quite capable. She just can't stay steady for too long. But there are steps being taken, and there is great rejoicing. I wouldn't say "She's walking!" yet...we're going to wait for the independent, I can stand on my own two feet for more than 30 seconds and then choose to walk to anywhere I please type of walking before making that particular declaration...but it is what it is...and it is good.

And a rare photo of her NOT sitting in the beloved W position.


Since we missed our feeding clinic evaluation last Monday, the nurse decided to send me a packet of paperwork to save time during our rescheduled visit. I am finding it incredibly difficult to complete! I need a paragraph to explain the simplest of questions, such as, "At what age did your child sit up without help?" Let me see, we were able to place her in sitting position for a few minutes (with pillows behind her for when she inevitably decided to flop backwards) at the age of 11 months. She was unable to get herself into a sitting position until the age of 18 months. The space provided for that answer is about 3/4 of an inch. I suppose most people can say " 6 months!" and be done with it...but not us. There are many loaded questions, questions that I'm not sure how much detail to give or how to explain things in a concise manner. Questions like, "Does your child have seizures? When was the last one?" or "Has your child been to the neurologist? What were the results?" or "When did your child speak her first word?" Do they want to know the first time she spoke, even though she went on to lose three separate sets of words? Or do they want to know the first time she gained words and they didn't disappear? When they ask at what age did she begin putting two words together, do her signs count? She has been combining signs for a month or two now, but she is not speaking any word combinations yet. There are variables in almost every question.

Yesterday I was so overwhelmed by filling out routine paperwork that I had to put it down and walk away. I just couldn't find the right answers for their simple questions. I suppose it is because we have no clear cut answers with KayTar. Her baby book is entirely misleading. I have dates for her first words, but those quickly vanished. I have a date for when she crawled for the first time, but it was really more of a belly slither...the true crawling came much, much later. Somehow, we didn't see the gaps for a long while, and we kept plugging along like things were normal. We filled in her baby book as we went along, oblivious to the signs before us. We thought, "Well, we can put her in a sitting position and she can stay for a bit, she just doesn't like it and that's why she doesn't stay for long." or "KayTar just likes crawling on her belly, kids do things in their own ways." The excuses might have been valid, but they were the reason we didn't see the larger picture until so much later. We assumed BubTar was advanced and KayTar was just taking her time. This is partially true, BubTar is advanced, and KayTar is just taking her time, but that isn't the end of the story.

When I want the truth about things, I go through my photographs. I can see plainly that up until July 2005 she wasn't raising her head off the floor. I can see that she learned to climb onto the Lego table in June 2006...but it appears she wasn't sitting on her own much until August 2006. I know she pulled to a stand for the first time in March 2006. She was not crawling, tummy off the floor, until August 2006. After looking through the photos, I was able to sit down and attempt to give the proper answers. Sure I have photos of her sitting much earlier than August 2006, but I know that was because I sat her down and snapped photos like a mad woman before she toppled over. In August, I have series of photos in which she is crawling, sitting, crawling, pulling to a stand. I can see her ability. I remember that at 17 months, we saw the new pediatrician and KayTar laid on the exam table the entire time, playing with a rattle and her toes. At 17 months, she was still an infant. I went back and looked a videos from that time, and I couldn't believe it. It has been a little more than six months and she has grown by leaps and bounds. I want to remember things exactly how they have come to pass.

I'm working on a new page for her book, with clarification on all the traditional milestones and spaces for non-traditional milestones. Her first sign. The first time she walkered. The first time she spoke a word that didn't vanish. Her first MRI. I want to look back in twenty years and remember exactly how it all unfolded, for things to be detailed and accurate. I want to see what I couldn't see then, and I want to compare it to the person KayTar is becoming and feel the amazement rush in...because it will, it already does. Each time I look at her, I am overwhelmingly amazed.

Thursday, February 22, 2007

Happy Birthday, KayTar! (part two)

Sweet girl,

You are two today. Two years ago at 4:56am on this very day, you sucked your first breath of air into your little lungs. You cried for the very first time and I held your warm body against mine for the very first time. Two births took place in the hospital room that day. I was born again as your mother, just as I had been born again when your brother was born. Depth was added to the person who I had always been. My heart swelled so that it would be large enough to contain enough love for both you and your brother. In that moment, I was changed. Every moment after that just continued what had begun in that birthing room. You have challenged me to become a person I never knew I was capable of being. You have made me stronger, calmer, happier, and wiser. You have given me gifts beyond measure, KayTar. We may have taken a different path, but it has been an extraordinary journey. I could never wish for a better traveling companion than you. You are my light, sweet girl. You are incredibly intelligent and creative. You amaze me daily with the new things you are learning and the rate at which you pick things up. You have a wonderful sense of humor. You fill our days with laughter and cuddles. You do things in your own time. You are stubborn. You know what you want and how to get it. You will grow up to be a strong, independent woman and I so look forward to meeting that woman one day. For now, I'm content to hold you in my arms for just a while longer, carrying you through this life until your legs are strong enough to carry you. And even when they are, if you ever get too tired to do it on your own, I will always be here to scoop you into my arms a carry you for a while.

I love you, KayTar. Happy birthday, baby girl.


Happy Birthday, KayTar! (part one)

On your very first birthday:

When you were 6 months old:

On your one year birth day:

At 18 months:

And this morning on your two year birthday:


Monday, February 19, 2007

Post Game Wrap Up

Ugh. Where to begin. This one was difficult.

She was in pain for much longer.
She was vomiting. Phenergan put a stop to it, but not until her tummy was emptied.
The head tilt was much more aggressive.
She was extremely sensitive to the light.
We lost her a few times. She was awake, but no longer conscious.
One of these times, her eyes were rolling in her head, her legs were drawn up, and she was grunting.
It was frightening.
She was in the tub when it happened, being cleaned up after evacuating her tummy. It took Josh holding her steady in the tub so I could clean her and we could get her out of there.
She was extremely dizzy for a very long period of time.
Her legs seemed to stop working several times.
It started at 12:30. She went to bed at 8:40 with her head still locked down.

These episodes have become such a part of life that while we never like them, we have almost gotten used to them. This one was tough.

Watch Out Below!

Found the shoe. It hit me square in the face as I looked upwards admiring the lovely sky today.

KayTar and I were on the way to her feeding therapy evaluation today and I heard her making small, pitiful sounds from the backseat. One glance in the rearview mirror and I knew what was happening. I saw rolly blank eyeballs to accompany those small pitiful sounds. We were on the freeway, the next exit happened to be the exit we needed to take in the first place, so we exited promptly. The first parking lot was the parking lot of our intended destination, so we parked. I opened KayTar's door and she was sobbing softy, unable to open her eyes. She said "El-puh" which means help in KayTar-ese. I handed her her blanket, which she absolutely did not want, so I replaced it with a train she is very fond of. She tried to open her eyes to look at it, but she could not. She put it to her mouth and licked it instead. She's very sensory seeking during these looks a little like she is on ecstacy. She likes to lick and rub things. I called Josh and had him call the therapist and explain what was happening and apologize for the short notice. We headed straight home. KayTar whimpered most of the way home...occassionally saying something pitiful like, "El-puh." or "Ah-done." that plucked my heart strings and made me drive faster and faster. As soon as we got home Daddy stepped in a cuddled while I paged the pediatrician who is currently paging the neurologist to see if we need to take her to the hospital for an EEG. The only time they do these EEG's are M-F from 8-5 and KayTar never has episode then...except this time. So, we'll see. She is asleep on the couch at the moment, but that doesn't last for long. She'll be awake and vomiting most likely in the next 20 minutes.

Day 15. Almost exactly 2 weeks, like clockwork.

Sunday, February 18, 2007

Lazy Sunday Afternoon

And yes, we are all in the same room.

Friday, February 16, 2007

So I forgot to title this one...

Today when we left the house I was armed with a bottle of milk and Blue's Clues cued up on the iPod. Shrieking problem solved. I think the shrieking was more "I feel terrible like a two year old today!" than a real problem, thankfully. I think the car is such a problem because I am in the driver's seat and she is directly behind me. I cannot understand a large portion of what she tries to say to me, and I surely cannot see what she is signing to me. She looks at books and expects me to name objects when she asks, and I simply can't do it when I am the person driving. She is totally calm when Josh is driving and I can turn around and engage her. I hate that I can never intially dismiss something as simply being age-appropriate, or explain it in some other innocuous way. Everything is scrutinized. KayTar can't have a bad day without someone thinking it is a foreshadowing of things to come. We don't know what causes episodes, and we can't find a common element, so we look at everything and question it. We tuck away details so if things do take that course, we can say "A-ha! That was it!"

On the food front, she is indeed hurting. I spoke to the pediatrician and she said KayTar needs 1173 calories per day. She said her minimum energy expenditure is 674, that is what her body uses just to run properly. Anything she actually DOES is over and above that. We aren't even hitting the minimum to keep her body running on a daily basis. PediaSure here we come!! Here is the low down of what she needs:

1173 calories
13 g protein
35 oz fluid

That is insane. Today I've chased KayTar around with a bottle of milk. I've kept it full and cool, and haven't let it leave her side. Do you know how much she has drank? 12 ounces. That is it. She's having a "good" day food-wise, which means she has eaten a yogurt and two stage 2 jar foods...and her caloric intake is 505 including milk. 1173 is the impossible dream, people. It will take three PediaSures to get her up to that today. But the chances of her drinking three PediaSures today? About the same as Josh and I vacationing on Mars, without children. That is to say, its never going to happen. Ever. And because I tend to worry more than I should, I keep thinking, "If an illness blew through here and she caught it, we'd be in the ER in no time flat." I know that is negative, but again, it is realistic. If she comes down with something when she is already eating so poorly, we are sunk before we've even begun. It makes me want hole up in the house and Purell our hands every 2.5 seconds. I'm resisting that urge. We are actually going to a friend of KayTar's birthday celebration tomorrow. I'm sure the germs have RSVP'd already. These are toddlers after all. But I don't want her to miss out just because I'm slightly paranoid and one of my hobbies is worrying. It will be fun, so I'm tucking away the neuroses for the day tomorrow...and bringing the Purell.

We are on day twelve people...and it is good.

With a face like this? It has to be good.

Thursday, February 15, 2007

I know that shoe is around here somewhere

I've been reluctant to post as of late. We've had eleven days episode-free, and a post just seems like asking for it. Things have been going swimmingly! And also, slightly less than swimmingly.

Eleven days, no episode. Excellent. But at this point? We're kind of starting to make bets on when it is going to happen. We've made it through a planned-in-advance dinner and through the Valentine's festivities without being interrupted by an event. Josh is full of theories of why they happen, and hypothesizing about how to prevent them without medication. I'm just hoping it happens on a low key day. I'm also wondering if they will cluster this go-round, like the previous two go-rounds. We've had a brilliant eleven days. KayTar has been the giggliest, silliest version of herself and we love it. We've been able to have a life! Make plans! Have fun with the kids! Go to dinner! Sleep at night!! Glorious!! But its been long enough that we're waiting for that other shoe to drop at this point. It isn't an "If..." in our minds, but rather a "When..." Is that negative? Maybe. But it is realistic.

KayTar has also decided eating is for suckas. Yesterday, we forced ENCOURAGED her to eat 1/2 of a yogurt and 1/2 of a stage 2 baby food. That's it. ALL. DAY. LONG. With her milk bottles, her grand total of calories was 500. The entire week has been the same give or take a hundred calories or so. *sigh*

And she's taken to getting very upset in the car the past few days. And shrieking. A LOT. And it makes me feel like there is a small furry animal inside my chest clawing its way out. Only it CAN'T get out. So instead it climbs up my throat and starts clawing its way through my brain. And I just want to beat my head on the steering wheel to make the furry little creature pass out. Today was the worst day. It was non-stop on the way to and from BubTar's school. And she was pulling her own hair with both fists while she shrieked. I tried playing games with her. Even SHOUTING games, in which we yell fun words like "Choo!!!" or "Go!!!!" but she wasn't taking the bait. She was going to shriek and pull her own hair whether I liked it or not. I did NOT like it. I canceled therapy and put her in her crib for quiet time. I called my mom to pick up BubTar, because there was no way we were getting the car a second time today. She had quiet time and then a nice long nap and woke up in a delightful mood. But tomorrow (cue ominous music) we'll have to get in the car again.

On another note, we had a glorious Valentine's Day. BubTar said it was "The best Balentimes Day EVER!!" and I credit at least half of that to Beck. Thanks again, Beck! We are keeping the decorations up for the rest of the week, because there was much weeping and gnashing of teeth when we discussed taking them down.

I'll be sure to let you know when that other shoe drops. I know its up there somewhere, and we all know what goes up, must come down.

Wednesday, February 14, 2007

Our Valentine's Day: All Becked Out

Inspired by the crafty earth goddess herself, also known as Beck, Josh and I decided to be a bit fancier with the Valentine's Day celebration. Last night we put up crepe paper streamers and blew up balloons. We filled out cards to each child listing reasons we love them. We put out a red tablecloth and heart-shaped plates for breakfast. Because I do not cook, this morning BubTar enjoyed frozen cinnamon waffles that I cut into heart shapes. For lunch, heart-shaped peanut butter sandwiches are on the menu.

BubTar's card said:
We love BubTar because he is:
*a good boy
*the best big brother
AND HE IS A GOOBY GOOBER (which is something that can reduce him to fits of giggles in an instant). WE LOVE YOU!

KayTar's card said:
We love KayTar because she is:
*a joy
*good smelling (Josh picked that one *lol*)
And our Princess Pie! (which is another of her nicknames) WE LOVE YOU!

It is impossibly difficult to reduce your love for your children to a list that fits on a tiny card...but it seemed to do the trick, because BubTar has had me read both his and KayTar's several times this morning.

And so, thank you Beck, for your Valentine's Day inspiration.

This afternoon Josh and I (and KayTar) are going out to lunch while BubTar is at school, and this evening we will be going on a "double date" to Chuck E. Cheese. I think that Valentine's Day might become BubTar's favorite holiday at this rate. Decorations? A gift? A cool card? Dinner at CEC? What could be better?

I hope you all have a Happy Valentine's Day!!

Saturday, February 10, 2007

I'm a Weirdo.

Bennie tagged me and now I must show you my inner weirdo.

1. I have to make the bed for getting into it. It has to be just before I get in, 30 minutes before will not do. The bed can stay unmade all day long, but when its time to go to bed? I can't get in until it has been freshly made. This drives Josh nuts, because every night we have to make the bed before going to sleep. And if he goes to bed before me? Then I make the bed with him in it. I pull the covers up over his head and straighten everything, and then fold them back down again for him.

2. I don't wear make up. If we have something really special to go to, like a wedding? Then I will, but otherwise I do not. I probably wear it once a year for a special occassion.

3. I was always terrified of people breaking into my house as a child. I slept on the second story and kept a rope (for escaping) and a bag packed with necessities under my window seat, just in case we were attacked in the night and I had to flee.

4. When I was a child, I was always terrified of people (not monsters) hiding under my bed. I used to think that when I looked under the bed, they would climb on top of it, and when I looked on top of it, I thought they went back underneath. I used to make my dad come in and check under the bed while I kept an eye on the top to make sure they weren't outsmarting us.

5. I am still terrified to be at home alone after bedtime. I don't mind being alone during the day or even at night, but I am really freaked out when I am alone and falling asleep.

6. I asked Josh to name something weird about me and this is what he chose. I wear socks all the time, unless I am in water. This is why I rarely wear sandals or flip-flops. If I MUST wear them, I do not wear socks, but it feels so odd. I can't stand the feeling of bare feet. I absolutely cannot sleep without my socks on. I never had this issue until I had mono in junior high. The fever went up and down so often that I could not maintain body temp without socks on and thus my obsession with socks began. After I was healthy, I was so used to the socks that I couldn't sleep without them.

I am tagging DDM, Red, and Juris Mommy. And just for kicks? I'm going to tag Y from the Internet.

Friday, February 09, 2007


Today I took KayTar's annual growth photo. *sigh* It is a bit early, and I'll try and retake it on her birthday to get a better shot, but I cannot believe how big my girl is.

KayTar at birth, with her 'key.

KayTar at one year with her 'key.

KayTar today with her 'key, being a typical two-year old in the respect she did not want to cooperate.

She is almost as big as her blankey!!

Here are a couple more, just for fun.

Wrapped in her 'key at birth.

Wrapped in her 'key today.

In the bouncer at birth.

In the bouncer today. (again, very poor photo)

I cannot believe she will be two in a little less than two weeks!

Thursday, February 08, 2007


I am stealing this wonderful idea from Red Rollerskate. BubTar has come up with a few gems as of late and I simply must record them.

Last night, BubTar went the bed. Well, rather, he went his palette on the floor next to our bed. I had to wake in the middle of the night, find clean undies and jammies, and send him back to his own bedroom. This is VERY rare. I can't actually remember the last time he's had an accident. So this morning I said, "BubTar, why did you have an accident last night?" and he answered, "Well, you know, I woke up and felt like I had to go potty, but I didn't really want to move." Laziness in action, people.

To the understand this one, you need to realize we live in a neighborhood that has a large Spanish-speaking population. This afternoon on the way home from school, he asked:
Him: Where do Maya and Miguel live?
Me: I don't know, where do they live?
Him: I don't know, I was asking YOU. They speak Spanish, so where do people speak Spanish?
Me: Lots of places.
Him: Just tell me ONE place.
Me: Mexico. They speak Spanish in Mexico.
Him: Well, is [our city] Mexico?
I almost died.

And this one is just sweet. This evening BubTar came up to me and said:
Him: So how was KayTar?
Me: She's fine.
Him: Well, how was she while I was at school?
Me: She was okay.
Him: Did she get sick?
Me: Nope, not at all.
Him: That's nice. How was her fare-a-py? (therapy) Did she do a good job?
Me: Yes, honey. She did very well today.
Him: Oh, thanks for asking, Mama.
Me: No, honey, thank YOU for asking.

Tuesday, February 06, 2007

His and Hers

Last night she discovered the joys of YELLING REALLY LOUDLY in the car. She and her brother had a wonderful time shouting "CHOO! CHOO! CHOO!" in unison all the way home from the barber. Josh and I just basked in the glow of the normalness of the moment, and sighed about the fact that they now can work cooperatively to drive us insane. But the joy radiating off of KayTar as BubTar participated in a "game" she had created? It was priceless. The best part was that the excitement was started by the lollipop she was given by the barber. We never even opened her lollipop, she was just holding it and she had a sugar high. She actually licked the wrapper once or twice and said "MMMM-yyyy" (which sounds loosely like "yummy!"), and then she would sign "candy". We can only guess what might have happened had we actually OPENED the lollipop. Today on the way to take BubTar to school she shouted "Yay!" every 35 seconds or so...giggling all the while.

This morning she was watching cartoons in our bed with BubTar and I heard her shout "Ma! Ma! Ma!" so I went in to check on her and she signed "Mommy!" pointed to me, then signed "Sleep!" and started patting my pillow, demanding "Mommy, you must lay down with me immediately!" So I did. She snuggled right up next to me and patted my back so sweetly. She has suddenly become crazy about the cuddles. I am definitely loving it.

In medical news, KayTar is now officially off all preventative meds for 1 month. We are so overwhelmed with variables and the frequency of these episodes, we decided to eliminate all the variables we can. So the pediatrician and neurologist have agreed to letting her be off medication for a month to determine what is happening naturally in her body. If the episodes keep clipping along at this insane pace, we will be ready for a new medication. If they slow down to one every 2 weeks again, we will feel very relieved. If they continue happening at the current pace, I think we will ask to go ahead with the hospitalization, because it would be the best time to catch one of these on EEG. So that is the plan at the moment. Wish us luck!

I've been trying to sneak in extra time with him as much as possible, because I worry so often he is getting slighted in all of this KayTar business. Do you want to know the funny thing? When I give him extra cuddles, he'll say "Mom, is that ENOUGH??" Like he's humoring me by letting me love on him! Or when I sit down to play a board game with him, I'll play several rounds so he doesn't feel like our time is rushed and at some point he inevitably rolls his eyes and says "Okay, Mom, this is the LAST time I'm playing this with you." He is hilarious.

On Saturday, I decided to take the kids to the bookstore because Josh had to work and we hadn't been out of the house lately. We were all going to choose a new book to bring home and read. BubTar was so excited! He knew which book he wanted before we ever arrived. In the car, KayTar began fussing (which is odd for her) and when I opened the car door to get her out, I saw why. EPISODE. So I had to tell BubTar I was so sorry, but we had to get KayTar home right away. (see what I mean about the slighting?? we can't even make a bookstore trip without it being affected) I said that I promised we would figure out a way to get his new book that day, I'd just have to think of a plan. So on the way home, he gave me the play by play from the backseat:
"KayTar is CRYING!"
"Her eyes are closed!
"Now they are open!"
"Momma! Can't we go any SPEEDIER??"
"Oh! Oh! I think she's gonna FROW UP now!"
But when she would quiet down, even for a moment, he would say:
"She's quiet now, can we talk about the book plan?"
But she would inevitably start up again and he'd go back to taking care of her:
"Okay, I'm patting her hand now, Momma. She isn't crying anymore."
"Oh no, its not working, she started crying even though I'm patting her hand."
"Its okay, KayTar, Momma is driving speedier. We will be home soon."
"Momma, SPEEDIER! I think she's gonna FROW UP!!"

He is such a wonderful son and big brother. We really hit the jackpot with him. Today I was hugging on him and I said "How did I get so lucky to have you, BubTar? Did I win a contest? Were you the prize?" And he said "No Momma, I'm not a prize! I'm a BOY!" And I said, "Well, if you were a prize, you would be the very best kind of prize." He just giggled and said "Is that ENOUGH cuddling?" What a goober!

In band news, my mother is bidding on two children's guitars and drumset on EBay. BubTar is thinking of calling it "The Pajama Band", but he's not totally sure yet.

That's all the news for now!

Sunday, February 04, 2007

The microphone player

Even though yesterday was awful, there was one very, very bright spot. Because Josh had to work and KayTar's episodes are very consuming, my parents came to take BubTar for the day. His cousins were spending the day there, so he would have begged to go even if I hadn't needed him to. Once Josh came home, I went to pick him up. And when I arrived, he informed me that he is now in a band! A band!! My little boy is old enough to want to be in a band. Isn't that adorable? I know he's old enough to want things and he has a mind of his own...but being in a band just seems sort of old, ya know? But I was delighted! He informed me that they largely do covers of a band from Nickelodeon...and he is the "microphone player" (you mean singer? No, Mom...the MICROPHONE PLAYER) and his cousin is the drummer. His other cousin didn't want to play the piano, so BubTar said "Whatever, we just won't have a piano."

The best part?? They played a song for me. Oh yes! Sure, BubTar was singing into a large toy spoon. And yes, his cousin was playing drums on a set he had made from a highchair, empty box, toy shopping cart, and wooden chair. And, I admit, they didn't REALLY know all the words and there was a lot of humming? But it was THE MOST ADORABLE thing I've ever seen. BubTar was dancing a little while he "played the microphone" and he kept sneaking little looks at me during the song, but he wouldn't keep eye contact long enough for me to give him the "You're doing great!" face. But it was the best moment.

He talked about "the band" the entire way home. He said his cousin is going to get the "real instruments" and write down the words to the songs so he can practice. And then? They're going to have a SHOW. Yeah. A show. My four year old and his band are planning a show. I can't get over it. When we got home he told Josh about the big plans and the show and said things like "I hope you like my band, Dad." to which Josh replied "I'll love it, because YOU'RE in it." And then, after we tucked him into bed, we could hear him singing in his bed for the next two hours.

Saturday, February 03, 2007

You'll never guess...

what happened today!
What's that you say? You think KayTar had an episode? My word! You're correct! How did you guess?
Oh, I guess you have a point, she HAS had 4 episodes in less than a 2 week period, so it does make it the odds-on favorite for the answer to "Guess what happened today."

Seriously guys, I attempt to handle this with a "That's just the way life is." kind of attitude, but 4 in less than 2 weeks? Its wearing me thin. Just a bit. A.TEENY.TINY.BIT. It just seems a little unreal. Although they have always been awful, at least they were predictable to some degree and kindly they are just happening a little too often and sporadically for me.

I understand we are dealing with an in-flux of variables and therefore we don't know if this is a true natural increase in the episode frequency or an increase due to the influence of one of the many variables.
Variables such as:
*Weaning her from Periactin
*Being very ill and hospitalized for dehydration
*Weaning her on to Topamax
*Her being totally med free for the entire week she refused to eat
*Not being up to the full dosage of Topamax for her weight level

I understand that it could be one of many things that are easily explained...or it could be something unknown. I suppose that besides the fact that these events are very unpleasant (a quick sidenote, the pediatrician always refers to them as events, which then makes me bunny trail a little and imagine us hiring a party planner for these "events" and decorating the house and having guests over, ect...and it is REALLY nothing like that...unless at the "event" the entertainment was a small person who got entirely sloshed and proceeded to entertain by screaming and barfing all over the place and then passing out after 8 hours or so of it, it might kind of be like that), I worry that these increases are not due to an outside force, but of their own accord. I worry that while we have a tentative diagnosis, it is truly unconfirmed. The fact that she is still vomiting at night makes me wonder if there is something going on in her brain, maybe causing the vomiting and also increasing the episode incidence. I know it is just a worry born out of the unknown and the unfamiliar. I know there aren't supporting facts and it is just an emotional response to what is happening.

For a while I felt like we were adjusting to the episodes. I knew what to expect, when to expect them, and how to just all seems for uncertain at the moment. It seems like she could wake up and still be having it in the morning, because we've lost the familiar pattern of it all. Whose to say she will be out of it in the morning? I believe she will be based on the episodes behavior in the past, but if that starts to change too much, I no longer have that to rely on for comfort. It is a bit disconcerting.

KayTar has turned me into an organized, predictable sort of person. I like order. I like the calendar. I like planning things. I like to know that if I write EPISODE down in my desk calendar, for roughly 14 days afterwards, I will not have to write that word again. I do not like writing the word EPISODE in my desk calendar and then writing it again two days later, then again the day after that, and again nine days later. I don't like the fact that when I go to bed tonight, there are no guarantees that I won't be writing that same word in my desk calendar tomorrow. I don't like not knowing that we will have a chance to catch our breath before another waves hits us. I just don't.

Bye Bye PupTar

Today, we sent Maggie back to the family we adopted her from. Amidst the illness and drama of the Strepidemic, we realized we could no longer give her what she needs. We'd been talking about it for a while, because she has such a high energy level and we are so busy with various levels of KayTar-care that those needs aren't met properly. Penny, our other dog, is very low key and she is just as content to follow us around the house and lounge on the sofa as go to the park and run. Having everyone ill and having to be in the hospital just reinforced that we aren't giving Maggie what she needs...and so Josh made the very difficult decision because I said I couldn't be part of it. And he just left to take her, because I couldn't go. I couldn't even look at her today, because I knew. And last night I laid awake in bed trying not to think about it. Maggie is just such a sweetheart, and she's beautiful, and I love that crazy dog...even when she's driving me crazy. But I understand that we had to do this. It just sucks. When we got her? She was my replacement baby...because we knew it would be a long time before we have any more children, if we ever do. And we can't even take care of her. I suppose that just reaffirms the whole not having any more children decision.

I'm sad. I'll miss my MaggZilla.

Bye sweet girl.