Wednesday, May 30, 2007

On food*

I love this video, because it is just so KayTar. The facial expressions, the slight silliness, the interactions, it is all very KayTar. Oh, and do you notice what she is eating? Shoestring potatoes. Not the healthiest choice, I admit, but they are TINY. She used to be so terrified of foods that were smaller than her fist, she wouldn't even touch them with her hands...and here she is, chowing down. Amazing. Last night she ate the middle portion of half a peanut butter sandwich. She asks for what she wants at meals now, signing "green beans" or "peas" or "sweet potatoes" and the like. She prompts us to feed her on occassion, when just a month ago we were constantly the one goading her into eating, often against her will. I haven't tracked her calories in Excel for about a week now, and I am confident she is doing well. She is still on a diet of pureed baby food, but she is starting to branch out and try new things. Last week at my parent's house she ate an entire chicken strip. She isn't ready to make the switch to a real food diet, but when the mood strikes her she is eager to try things. We are just letting her lead. If there is anything we've learned, it is that she has her own schedule and will do things when the time is right. We are just along for the ride.

*The post didn't start out to have anything to do with food. Weird.

Tuesday, May 29, 2007

Not so bad

On the heels of the last post, I need to give a bit of a clarification. Things are not so bad. I always, always appreciate the support...but these moments of waiting are not too bad, and I don't want to come across as too "Woe is me...". I agree 150% with the doctor's decision to wait and see. It is the only logical option, and I trust our pediatrician completely.

Once upon a time, I was panicked almost every minute of every day. So much was unknown and KayTar was not thriving, and it felt like I couldn't breathe under the weight of it all. Things felt critical. As we have gleaned information from tests we've been through, and as KayTar has begun to thrive in the midst of it all, the panic has receeded. Of course, I still want substantial answers, but it doesn't feel like a critical situation. I don't worry that she has a tumor taking over her brain, or that her brain is slowly dying. As much as I want answers, we have the time to wait on them. I feel comfortable in the waiting. We've ruled out the really terrible possibilities. We have an idea of what is happening, even if it isn't a complete picture. Things are okay. We are okay.

We don't know if she has had a seizure. We don't know exactly what causes the episodes. We don't know if the episodes are a thing of the past. We don't know why her eyes are behaving oddly. We don't know what has caused this change in what had become the norm. We don't know what exactly caused the lesions and the hearing loss. But we know she is thriving. We know she has an amazing pediatrician and team of specialists looking after her. We know that her MRI did not change. We know she hasn't needed a Pediasure in almost a month. We know she is eating well, so well that I have been slacking on my caloric Excel spreadsheeting. We know she is walking, talking, and signing. We know she is friendly and happy and silly.

So while we have unanswered questions, the most important questions have answers, and by and large, they are good answers. We are pleased and secure in the fact that she is doing so well in spite of the unknowns, and it makes it that much easier to wait for the rest to be answered. And KayTar can't be discounted...she can never be discounted. In her own little way, she is providing more clues and as we encounter odd moments, it just adds more pieces to the day we will have the whole puzzle in front of us. Then it will just be a matter of putting it all together. We will get there one day, hopefully soon, but in the meantime we are okay with waiting a while longer.

Saturday, May 26, 2007

Continuation of a Question Mark

Wow, first of all, I've never had as many commenters as I have in the last week. Wow. Honestly, I've never needed the voices of support like I have in the last week. So thanks, both old and new readers, and you lurkers out there, too. :)

Before all of the drama of this week, KayTar had had an "episode". The more we have discussed it and anazlyzed it, we have decided that it probably was NOT an episode. Unfortunately, we do think it was a seizure. We do not think it was an episode, because it did not include any episodic behaviors; no head tilt, vomiting, dizziness, pain, or light sensitivity. The only common factor between both events is that her behavior clearly showed something neurological was happening. There is a change in mental awareness and behavior when there is a neurological event in progress. The reason we are leaning more toward seizure is that she exhibited typical seizure behavior. And with KayTar, nothing has ever been typical. We've worried about seizures before, as a part of an episode...or at the beginning we thought the episodes might be a form of seizure, but they were NEVER typical. This one was. She had involuntary motor movement (jerking, rolling of the eyes), then she fell asleep suddenly and basically slept until morning. Episodes last for hours. This was only minutes.

I spoke with the pediatrician, and I said, "If I didn't know seizures were off the table, then that would have been my first thought..." and she said that seizures are not off the table. For some reason, I thought that this EEG had taken seizures off the table. Alas, it did not. An EEG is only a snapshot of her brain at a specific moment. The pediatrician said that is she was having some continuous focal seizure activity in the brain, it would be picked up...but random seizures would not be unless she was actively having one while the EEG was being recorded. The neurologist did tell us that at some point, whatever migraine syndrome they believe her to have could trasition to true seizures.

Where does that leave us? It leaves us where was always are, waiting and wondering. Are we glad there is a chance the episodes are becoming a thing of the past? Yes. Do we feel that seizures are a trade up? No. Episodes did not damage the brain, although they are horrid and incredibly painful. Seizures, while mild in comparison, do have the potential to damage her brain. Do we know for sure this is was a seizure? No. Do we feel like it is a strong possibility? Yes.

Are you ready to hear the amazing plan of action?

Here it is: Wait for something else to happen.

Even if it was a seizure, if they only happen once in a blue moon (or every 46 days), then preventative medication would not be worth it. If we do see a repeat performance in the near future and this becomes a trend, then we will have to discuss medication options. If we discover a trigger, like the fact that the windows were down, the wind was blowing, and the sun was behind the trees flickering in and out, then we should avoid it.

Yesterday, we had something else happen. KayTar was sitting with her daddy on the couch, and she tried to sign "Daddy", but she poked herself in the eye instead. She didn't do it very hard, in fact I can show you how hard it was.

Take your hand (whichever you would like) hold it in front of your face, thumb pointing towards your face, fingers fanned out, and tap it on your forehead. There! You signed "dad". Good for you!

Well, that is what she did, only she missed her forehead and caught her eye. She fussed a bit, and kept her eyes closed for a few seconds. When she reopened them, the eye she had poked was pointing inward to her nose and drifting. Her other eye was properly aligned. She blinked a few times, but it continued to point inward and move slightly. It lasted 1-2 minutes, and then she started gagging and almost vomited. We ran her to the bathroom, and then suddenly everything went back to normal. It was very strange, but strange doesn't necessarily mean is KayTar we are talking about.

Strange is almost normal here.

Thursday, May 24, 2007

The letter

I wrote her a letter. I wasn't going to because I couldn't decide if I was doing it to educate her or to make myself feel better. I spoke with Bennie, but I still wasn't sure what to do. Then I started thinking about so many of our friends; Ben and Bennie, DDM and Bugga, Christy and Elias, Natalie and M, Em and Willow, Summer and Anika and Kari and the Cat, and I thought about all the "helpful" comments they have and will have to endure, the looks, the judgments...and I decided if I could help it, I wanted one less person out there giving those comments. And I thought about KayTar and me, and decided I have to get used to standing up for us, because nobody else can. People will not know if I stay silent. And so I sent the letter.

Here it is:

Room Mother,

I don’t usually do this, but I felt I needed to explain something. When I was dropping BubTar off, you mentioned casually that I need to take KayTar off the bottle and it struck a nerve, for reasons you could not have known. KayTar has developmental delays, she is deaf in her left ear, and she has brain lesions, a migraine syndrome, communicates largely in sign language, and has a feeding disorder, which prevents her from drinking from a cup or straw. She is still on purees, so most of her nutrition comes from her bottle. Without it she would have a feeding tube. I know that no harm was meant by your remark, but I just wanted you to know a 2 year old with a bottle is not always a simple situation, even if it looks that way from the outside.

I’ve never done this before, but I’m going to have to get used to explaining our situation to other people, we have a long road ahead of us. I hope I didn’t upset or offend you, I know you didn’t mean anything by what you said and that you didn’t have any idea what was going on. I just needed to take the opportunity to explain our situation.



And I was so nervous sending it to school with BubTar yesterday, but when I drove away, I felt like this weight had been lifted from my shoulders. I knew I had done a good thing. I was still nervous about how it would be received, because I am about as non-confrontational as they come, but I knew it was right.

Yesterday afternoon, she called and apologized. She said she felt like she put her foot in her mouth before she even got the letter. She said her son was very tall at a young age and people used to give her "helpful" comments about her babying him, so even though it wasn't the same, she could understand why it was bothersome. It was a bit of an awkward conversation, but a good one.

It was a growing experience for me. I'm not one to handle things like this, but in the future I hope I will be more prepared to do so. That every time I practice it, it will get a little easier to speak up the next time. Speaking up is the only way to help people understand.

Thanks again for all the support. And Bennie, thanks for being my behind the scenes cheering squad.

Also, BubTar bit the Room Mom's son at school you think he secretly reads my blog? ;)

PS: We are going in for a sedated CT scan in just a few, and if you would think positive-getting-some-answers thoughts, we would be much obliged.

Wednesday, May 23, 2007

Speaking of bright...

You know how I mentioned KayTar was very bright in my post yesterday? Well, she is reading. No, seriously. She's reading.

Over the last week or so, we've noticed her indentify a couple words correctly out of the blue. Then yesterday she was sitting and looking through a book and I heard her read a couple words to herself. Intrigued, I got a piece of paper and a pen and sat down with her to write some words, here is the video:

Is that not insane? She now thinks it is the BEST GAME EVER. And keeps asking for "A-say? A-say?" (what's that say?) and bringing me pens. So far, she knows the words on the video plus these:


I just can't get over it! Now I wonder what else she knows that we don't know she knows. It isn't every day you discover your two year old can secretly read.

I sent the video to her pediatrician, who was shocked as well, but she said "No doubt she is bright. Maybe one day she will be able to figure out what she has!" Josh and I got a good chuckle out of that, although we hope it all comes together before then!

I don't think it is true phonetic reading, I think it is more sight word reading, but a two year old with 15+ sight words is shocking to me!

Last night, Josh said, "How was your day?" and I said "Fine." like I always do, and he said "So the day your two read old learns to read only gets a 'Fine.'?" and we both had a good laugh.

KayTar is just full of surprises!

On another note, you guys were all amazing yesterday. Thank you so much. I know there is much debate about whether the nature of blogging creates a sister-like bond, and after yesterday, I think I'm leaning more towards the yes side. The comments alternated between the equivalent of "You want me to kick her ass?" and verbally stroking my hair and giving hugs. It was a very sisterly response (and brotherly, for Bennie of course).

And hi there, lurkers! I didn't know you were out there. It was nice seeing you!

Tuesday, May 22, 2007

From the outside...

Today BubTar's school room mother asked how old KayTar was while helping BubTar from his booster seat.

She said, "Oooh, baby girl is getting big! How old is she now?"

"She is two." I replied, while smiling.

"It's time to get rid of that bottle, Mama." She stated, as she closed the car door.

And I pulled away from the curb feeling very much like I had been slapped across the face. Hot, wet tears poured down my cheeks and I didn't know why. I was angry and shaking, and the tears kept coming.

I haven't cried about KayTar in many, many months. Things are good, wonderful even. There is no cause for tears. So why now?

Perhaps it was because a stranger felt I needed a lesson in how to care for my child. Maybe because her words insinuated I do not know what is best for my child when I bust my ass on a daily basis to insure I do everything I can for her. That somehow she could tell from the two minutes our car door was open what was best for my child, a child she knows nothing about. Perhaps it is because I know that we have many more of these moments ahead of us, and that one day judgments like this will no longer be directed at me, but at KayTar. I don't know why I cried.

I know this mother does not know what we are going through; her words were not meant to be hurtful...slightly judgmental, perhaps, but not hurtful. As I pulled away from the curb, I thought, "Explain! You should have explained." but I couldn't have, not in the 10 seconds it took for that door to close. That is all people will see at times, a snapshot of us in time unaware of our past or future, only that moment.

People will see sweet KayTar wearing her harness and think I am awful or lazy and treat my daughter like an animal. They won't realize that she is deaf in one ear and delayed, and that she doesn't feel secure walking in public without it. They won't realize that she can't hear me call her name in a noisy place, or understand when I tell her to stop so she doesn't get hurt. They won't realize that it is the only way I can safely give her freedom to explore on her own. They will just see me in all my awful, lazy parenting glory mistreating my child with a leash.

They will see her with her bottle, like today, and wonder why the hell I haven't weaned my poor child already. Don't I know that it is bad for her teeth and gums? That I am holding her back by letting her continue to use it? They won't know that we are so very thankful for the bottle, and without it KayTar would likely have a feeding tube, because the majority of her nutrition comes through that bottle. They won't know she physically cannot suck from a straw or figure out how to use a sippy cup. They will see me spoiling my child and ruining her teeth.

Children one day will not want to play with her because she has a hearing aid and it makes her different, the way BubTar told me he didn't like a classmate because he wore glasses. I cried when BubTar told me that, because my heart broke for that sweet little guy and for his mother. BubTar was told in no uncertain terms that it was not okay to exclude people for being a little different than he is. But it happens. It shouldn't happen, but it does, every day.

I don't think about KayTar's future often, because so much is unknown...we don't know what to expect because life with KayTar is a mixed bag. She is extrememly bright, but also very challenged. She is an amazing study in contrasts. So I don't worry about the future, we will deal with it when we get there...but when a tiny piece of the future meets us here in the present, I can't help but notice it.

And maybe it cracks my heart just a little.

Sunday, May 20, 2007

46 (question mark)

Yesterday evening we were driving in the car and had the following conversation:

He said: How many days has it been now?
I said: I'm going to count when we get home, but I think it is day 45 maybe? 47? No, 44? I'm not sure, something like that though.
He said: Hmm, maybe she's just outgrown them.
I said: Don't say that...the JINXING.
He said: I don't believe in jinxing...if it is going to happen, it will happen whether I mention it or not, Kyla.*
I said: You are being cocky...saying things like "Maybe she's outgrown them." I wouldn't do that.
He said: Well, it has been 45 days or so, maybe she HAS outgrown them.
I: *shook my head*

Then we got to my parent's house and the subject was forgotten. Instead, this is what we did.

After much swimming and eating and lounging, it was time to go to Josh's brother's birthday dinner, so we loaded up the kids and hit the road. In the car, KayTar was doing the car version of "Foo-foo" in which the windows are rolled down and the wind hits her in the face. She loves this, absolutely loves it. I was turned so that I could watch her, because she gets very upset if I don't participate in "Foo-foo" and I saw her eyes go funny. (very technical right?) So I told Josh to roll up the windows, but the funniness continued. It wasn't the typical jerk/roll to the left, it was all over motion. They were moving up and down, rolling back and forth, moving side to side. Some rolling, some jerking. It was weird, and KayTar was aware of it happening, because she kept pushing her eyelids down over her eyes and rubbing them. Once we got to the party, we waited in the car out front for a moment to watch her to see if it passed. Josh's family arrived and we explained the situation and we decided to attempt going in. The eye thing lasted from 5-7 minutes, and by the time we got in the house, she was falling asleep rapidly. We were in the house long enough for me to hug a few people, and then we had to leave again to get her home and medicated in case the pain was coming. She slept on the way home, and slept once we got home. She only woke because I gave her the medication, which is a can't sleep through that! But she just laid in her crib for about an hour, before falling right back to sleep. She cried started crying at about 9:30 and when I went to check her the light was bothering her and she wouldn't let me pick her up, and I thought "Oh no, here we go." but Josh gave her a drink and she quieted down and went back to sleep. She is still asleep right now.

All in all, strange episode...but easy and painless for her. The timeline is something like this:

6:15ish-6:20ish Eye movements
6:20ish falls asleep
6:45 wakes for medicine, lays quietly in bed
7:50 falls back asleep
9:30 cries out, falls back asleep
9:30+ sleeps through the night uneventfully

I don't know if we should classify it as an episode, because it was so different. None of the major players were present. No pain, vomiting, light sensitivity, or head tilt. It really only lasted between 5-7 minutes. It looked more like a seizure than an episode, but who knows. It was definitely something and I don't know what else to classify it as. Episode really is a broad term, so that is what it will be called for lack of a better description.

Of course, once the episode started I immediately recalled the earlier conversation we had. The Jinxing! It lives!

*Josh firmly maintains his anti-jinxing stance.

Edited: I went back and changed the (period) in the title to a (question mark), it seemed more fitting.

Friday, May 18, 2007


For about a week, KayTar has understood what "I love you." means and whenever we would say it, she would lean in and kiss us. "Muah?" It is adorable. Then on Wednesday, I said/signed it to her, and she did it right back and she said "Woo." And then she kissed me. Ahhhh, I melted! She's doing it all the time now. Even unprompted. I heard her saying "Woo. Woo! WOO! I cry." yesterday and I looked at her and she was signing "I love you." so I told her the same and she said "Muah?" like "Come kiss me now, please." It could not be sweeter.


Speaking of love, tomorrow is our 6 year wedding anniversary. I'm posting this today because we will be out of town tomorrow and I won't have access to the pictures I need for the post.

This is what it looks like when fetuses get married. ;)

The day was awful; beautiful, but awful. I'm not going to go into the whys of it all, because it is family related and I try and keep that off-blog. Everything is fine now, but that day was difficult. What I will say is that every moment since that day has made all the awfulness worth it.

I think when we married so young, people expected it to fail rather quickly. Our families didn't, nor those closest to us, but outsiders looked on with disdain and skepticism. I can't blame them, if I knew a couple of kids who were marrying at the same age we did, I think I'd feel the same way. We've made it for six years, and we are still going strong. Not for one moment have I felt regret for our decision to marry so young. I believe today, just like I did then, that if you find the person you want to spend the rest of your life with, there is no reason not to be with them. There is no one else I would want to share this life with. We've had some surprises, but I wouldn't want anyone else beside me through it all. I wouldn't want to raise these beautiful kids with anyone else. I wouldn't want to sleep next to anyone else, or cuddle on the sofa watching bad TV with anyone else. I wouldn't want to argue with anyone else, or bow chicka bow bow with anyone else. What I'm saying is, I chose Josh that day 6 years ago, and I am still chosing him today, wholeheartedly.

If you are out there secretly reading, Josh, I love you. But please don't tell me you got the message. ;)

PS: If you are a new reader and would like to know how Josh and I met (online, at age 13), click these links. This, too.

Wednesday, May 16, 2007

Sitting pretty

Yesterday, over at Kristin's she posted a photo of her youngest sitting up for the first time. He is coming up on being 3 months old, and while he was only sitting for long enough to snap a picture, it still really impressed me. Curious, I dug through my old photos (figuratively dug, because they are all digital and organized on my computer) to find a similar photo of KayTar.

This is the very first time I was able to place her in a sitting position and snap a photo:

She was 6 months old, and on her way down.

This is the first time she was able to actually hold the sitting position.

She is 9 months old. And we had to keep a pillow right behind her because...

This quickly became...


By her first birthday, things are looking a bit more stable:

Some propping was still involved at times:

Other times not so much:

At 18 months the W-sit is born, and she finally becomes a sturdy sitter.

Say what you will about the W, but it was amazing for KayTar.

(yes, she is trying to ride Spiderman's ATV)

These days she does sit without her precious W on occassion, although as I type this she is sitting next to me and looking at her flashcards in that particular position. She is infinitely more stable than she once was. When I look at things like this, really look, I wonder how I missed out on the larger picture of what was happening. I wonder what might have happened if we had seen our current pediatrician all along; I wonder how much earlier things might have been caught. Hindsight is 20/20 so I don't think about it too much, but it is always a little shocking when I take a really good look at the past. We always thought the discrepancy between BubTar and KayTar was because he was advanced and she was taking her time in the normal fashion. We thought we expected more because of him, and therefore overcompensated by not worrying too much that she took her time. Our old pediatrician just paid no attention to any of it. I still owe him a letter explaining exactly how much he missed. Regardless, we have a beautiful, intelligent two year old who has totally mastered sitting, even if it did take her a while to get here.

Monday, May 14, 2007

ER visit number: 6

I had a perfectly lovely day. I was surprised with floor seat tickets to a concert from my husband, a lovely color page from my dear boy, and cut out cartoon figures he decorated for me. We spent the morning lounging around and eating cinnamon rolls Josh made for me. We spent the early afternoon at my mother's house, swimming and eating burgers my dad grilled for us. We came home and we all took a nice long nap before visiting my mother-in-law in the evening. We came home and Josh cooked a lovely dinner of asparagus and cheese stuffed chicken breast with garlic roasted potatoes.

We were sitting down and eating the wonderful meal and KayTar and BubTar were playing in their respective rooms, because they had both eaten earlier. Usually they play in the same room, but BubTar wanted to go to his own room for a while, and KayTar was still playing happily in her own room. I was about halfway done with my chicken when I heard THE SCREAM. You know the scream? The one that stops your heart? THAT SCREAM. And I dropped my plate and went running. KayTar was just kneeling on the floor in front of her desk, and it looked as though she had a bloody snot trail coming from her nostril (which was actually the tear). I snatched her up as Josh ran in the room, seconds behind me. And then the bleeding started. Oh man, did it start. It was pouring from her face, she was choking and gagging and sputtering. She was screaming and trying to touch her nose. She couldn't stay still. She was thrashing and howling. She threw up quite a bit of blood at one point. Josh took her to the bathroom to try and get a better look. He could only clear it of blood for seconds at a time, but he said, "We're going to have to do something about it. Its open." Josh is never the first to suggest a visit to the ER, so when he said that I freaked out a little. I called my parents to come sit with BubTar and I paged the pediatrician. I knew she wasn't on call and probably wouldn't answer on Mother's Day, but I paged in hopes she could get us seen in the ER quicker. If your pediatrician calls them ahead of your arrival, you get bumped to the head of the queue. She didn't call back by the time my parents arrived, so we left hoping the ER would be calm. Halfway down the freeway we take to the hospital (and all of KayTar's other doctors), KayTar started signing "Doctor." I guess we drive that road often enough for her to recognize it even in ther dark. Then she launched into the dramatics of "Doctor. I cry. Sad. Doctor." in true form.

Luckily, when we arrived the ER was empty. We were in and out in under 1 hour and twenty minutes, this never happens. Hooray for Mother's Day! The doctor came in and took a look at her (which she HATED), flushed the wound (which she HATED), got a better look at it, brought in some EMLA to numb the area (which she HATED), and then used Dermabond to seal the wound (which she HATED). She is such a fighter and people never expect it. She is a strong little girlie. It took four of us to keep her still.

In the short time we waited, I must have said "Oh God." upwards of twenty times. Finally Josh looked at me and said, "What? We are at the hospital, why are you worried?" and I said "Can you imagine if they do stitches? How will we ever keep her still for that? They'll have to knock her out." Thankfully we didn't have to find out. I can't imagine how they could have done that.

I'm still not sure what happened. She either fell and hit her nose on her desk, or she fell and hit the hardwood floor. I can't imagine how she split her nose like that. She's gotten quite a few bumps and bruises lately. I'm not sure if it is just because she is walking more of the time these days or if it is tied to her balance and those weird drop attacks she seems to have at times. She really is steady and careful on her feet, so the only way I can imagine her falling with enough force to bust her nose like that would be if she was hit with a wave of dizziness that laid her flat out.

On the way home from the hospital I said, "Hey Josh, we escaped the strep this time, but we still ended up in the ER with KayTar." Lucky us. ;)

I thought the dog had taken care of the doctor quota this week, but evidently KayTar felt that she had to defend her title of Queen of Emergencies.

Here are photos from this morning.

Sunday, May 13, 2007

Snapshots of Mother's Day

This holiday brought to you by the letters E and R, and the number 39.

Also sponsored by Dermabond.

(Longer story coming in the morning, I'm on my way to bed. ER trips make me tired.)

Happy Mother's Day

Saturday, May 12, 2007

Poor PenTar.

Yesterday evening, Josh was cooking, the kids were playing, and I was blogging doing something really important on the computer, and PenTar was hanging out in the living room. She got up, walked around our dining table, and went into the kitchen. Josh looked down and saw that she was bleeding quite a bit from her rear...and then we saw she had bled all the way around the table. On the carpet. It was probably a cupful of blood. It wasn't stool mixed with blood, it was just the blood. It was dark red, it looked black until we started cleaning it up. She started vomiting about an hour later, and she bled 2-3 more times. She made it through the night, there was no blood or vomit in the kennel this morning. We are taking her to the vet this morning. Poor PenTar.

Edited to add: They kept her at the vet today to give IV fluids and antibiotics. She is home now, on three medications and a special food. The vet is closed until Tuesday, so we will have to take her to the emergency room if she starts losing large amounts of blood again. Hopefully, she will start feeling better.

Evidently she and the kids have an arrangement to make sure I take someone to the doctor at least once a week, and this week the responsibility fell on PenTar.

See her owie? KayTar can sympathize.

Friday, May 11, 2007


Day 37! FREAKING DAY 37 PEOPLE! And we are still counting!

There is a chance we have been dancing around the house like this:

(though not as literally as jo(e)'s clan)

I know writing a blog post filled with this much joy is just asking for the gods of fate to come and strike us down, but I've got to enjoy this. If it is over tomorrow, or even in a few hours or minutes, it is still amazing. They average 15 days. She would have already had 2 episodes and be halfway to her third in this time period. This is an amazing gift.

Feel free to knock on wood. ;)

Wednesday, May 09, 2007

KayTar: The Empath

Lately, it seems KayTar has newly discovered that people outside of herself have emotions. It has come at a rather unfortunate time, because BubTar has been howling in tush-pain, or crying because of his throat or tummy or just from exhaustion with great frequency. KayTar takes this extremely seriously and immediately starts sobbing. Big fat wet tears slide down her sweet little cheeks as she is wracked with empathetic sobs. It is almost instantaneous. Then we have the fun task of settling BubTar in a hurried, hushing manner so KayTar doesn't end up vomiting from all that sadness. Once he has quieted, she quiets as well for the most part and she begins to check on him.
"Okay? Okay?" and she reaches over with her sweet little hand and pats him, usually on his back if she can reach. And then BubTar says "I'm okay, KayTar. Are you okay?" and she says "Okay." again. It is a heartmeltingly sweet exchange.

It doesn't only applies to BubTar, though. Let's say I stub my toe and start jumping around shouting "Oww! Dang! Agghhh!" I hear her sniffles start and they turn into full blown sobs if I don't stop nursing my wound and say "Okay. I'm okay, KayTar." and she will quickly come over and pat me and say "Okay? Okay?" And I reply, "I'm okay, KayTar. Are you okay?" and she says "Okay." again and all is well.

If Josh and I are quarreling over something insignificant, which we do often and in fun, (ie. I think that is actress so and so from that movie guest starring on this TV show. No it isn't, I know what actress so and so looks like, that isn't her. I really think it is her. No, it can't be. IMDB!) she begins to whine and we have to curtail our conversation and one of us does the Okay routine while the other continues to search IMDB. *lol*

It has been a sudden development. She woke up one day and her great big beating heart is suddenly outside her body and everyone around her has control over it. We didn't realize how sensitive she really was until she was watching Signing Time a couple days ago. The DVD she was watching was actually the first one we ever had and she has watched it hundreds of times without a problem. There is a song called "Part of Life" and the chorus goes:

When you're hurt, you always become better.
When you fall down, you always get back up.
When you cry, it never last forever.
I'll help you feel better, we help each other out.

The accompanying video segment is various shots of children playing, sometimes falling down or crying, as well as people comforting them. This did not sit well with KayTar. She started sobbing without warning and we could not figure out what was wrong. We tried comforting her, but it wasn't helping. And the minute the segment ended, she said "Okay? Okay?" and then we knew what had happened.

It is completely adorable and a wee bit sad to see her so worked up on the behalf of others. I know it is a new feeling for her, and she will probably get a better grasp on those feelings soon. In the meantime, there will be lots of Okaying done in our home.

In honor of making it through day 34 and through the beginning of day 35, I give you KayTar in all her cuteness.

Please excuse her poofy hair and the fact she has no pants on. This was an end of day video, after she had pulled out the ponytail atop her head and opted to wear her brother's shirt and no pants.

BubTar butt update: I asked the pediatrician about it. She said it is the worst shot she has ever received, and her nurse describes it as feeling like there is a baseball in your butt cheek. So sadly enough, he will just have to hobble around until it resolves itself. I will be hard pressed to ever convince him a shot is the easy route ever again. His fever is finally gone. When I checked on him in the night, he was covered in cold sweat, I'm presuming from a fever that had recently broken. That is good. He is staying home again today for butt recuperation (he can't sit in his seat at school or keep up with the kids in the line at the pace he is limping) and to make sure we aren't sending him back contagious.

Tuesday, May 08, 2007

Pain in the butt

BubTar status check, quick version:

Wednesday night: Wakes in the night complaining of throat pain.

Thursday: Spikes fever. Throat continues to hurt.

Friday: Positive strep culture.

Saturday: Fever is largely gone. Antibiotic shot in the tush.

Saturday night: BubTar's fever returns and he awake howling in the night about his poor tush.

Sunday: Fever becomes low grade. Pain in the tush continues.

Sunday evening: Fell asleep early. Wakes up a few hours later with a high fever (the thermometer registered around 102, but I think it was closer to 103. He was hot.) He was awake until after midnight feeling crummy with fever and a painful tush. KayTar was up until past midnight that night, too. It was party central here.

Monday: Wakes up with no fever. It bounced back and forth between normal and in the 100's on and off through the day day. His tush still was painful. Limping. Crying. Can't sit on it. Can't lay on it.

Monday night: Fever spikes again. Tush hurts still. Has a hard time sleeping. If he rolls on his tush in his sleep he wakes up screaming.

Tuesday: Wakes with no fever. Still very tired. Still laying around mostly. Still limping. Still not able to sit on his tush.


He is still contagious until his fever has been gone on its own for 24 hours. He has missed 4 days of school so far. I don't think he's milking the buttock injury, because he wakes screaming from it at night and he continues to favor it even when no one is in the room. He lays on his other side with that cheek in the air, or sits at a tilt keeping that side from touching the sofa. He has a red feverish welt at the injection site that is roughly the size of his fist. Last time he definitely wasn't hit this hard by the strep. 24 hours on antibiotics had effectively kicked it. He was bouncing off the walls as per the usual the next day. This time, he's still lounging on the sofa and randomly falling asleep. I haven't heard the words "I'm bored." in almost a week. You know he is feeling poorly when he doesn't complain of boredom even though we haven't left the house in a week. Poor boy.

On a positive note, as of yet nobody else is symptomatic. Of course he is still contagious and we have the time period he is contagious plus 5 days to see if anyone else will come down with it, but so far so good.

On an even better note, today is day 34. That is right. DAY 34. So even if the break doesn't last any longer, it has been wonderful and we have a new record. If the break continues? Wow. That will be extraordinary.

I'm still worried that we will have the unfortunate luck of both the episode and strep hitting at the same time, but we're hoping that won't be the case. So far, so good!

If a bunch of new posts showed up in your Bloglines, ignore them! :) I was adding a label to some older posts. This is the only new one.

Sunday, May 06, 2007

If your son spits in his palm and tries to give you a handshake, turn to page 49.

Last night around 1:30am, BubTar woke up howling about pain in his injection site. He was feverish again, after being fever free all day yesterday. After both of us tossing and turning while I tried to snuggle him back to sleep, he continued to whimper. I made him take a dose of Motrin. We both went back to sleep about 4am. We've been having to give Motrin today to keep the pain and fever away. Yesterday he didn't need any medication at all and was feeling so much better.

We've been trying so hard to keep the kids apart, but it is a losing battle. We were shooting to keep them apart at least for 24 hours after the antibiotic shot, but somehow first thing this morning KayTar got close enough to plant a kiss right on BubTar's mouth. I turned just in time to see it. I think the germs have brainwashed him into being their soldier. His purpose now seems to be furthering the plague. Every time I Lysol, he is following behind me touching the area I just disinfected. He's sticking his hands in his mouth and touching toys. He's blowing raspberries. I was resting on the couch and BubTar tapped me on the shoulder and said, "I thought you were going to shake my hand?" and held out his little palm, which was glistening with the saliva he had freshly put there. After a few days of doing well with containing most of the fall out, I think it all unraveled today. I'm starting to feel run down and I've had a headache kicking my arse all day...and I think I've been running a bit of fever. Blech. But no sore throat, so I am maintaining that I am well until that starts. And it WON'T. If it were to happen, the system has failed. I've been the go between all week and if I'm sick, I've probably shared it with everyone. Initially we thought it would be okay to lift the quarantine today (even though KayTar crossed the barrier prematurely), since his shot was over 24 hours ago...but since he is still running fever (as we speak) I'm sure he is still contagious at least for 24 more hours. Arg! It is out of our hands.

And KayTar did a face plant on this table this afternoon. (It isn't in its normal spot if you were wondering why we have a table in front of a table. *lol*)

The picture doesn't do it justice, it is above her right eye.

Then she bumped her head on the staircase, right around the same area.

I hear that is great for warding off headaches. *sigh*

What page am I on now? Oh right. 49. Can't wait to see what's next.

Edited to add: Poor BubTar fell asleep on the sofa at 7pm. I moved him to our bed a few minutes ago and he was just screaming from the pain. I couldn't even take his temp under his arm because of the pain. I think he fever is close to 102 again, though. I feel so bad for the little guy, even if he is the type to spit in his hand and try and make me shake it. I hope the medicine helps him soon.

Saturday, May 05, 2007

Choose Your Own Adventure

A few posts back, the lovely Julie asked me how I live peacefully in the meantime, while waiting for the other shoe to drop. I have two answers to this question.

The first answer is that I am comforted beyond measure by predictability and planning. As long as I know to expect and episode and for all of our work to be undone, I can live happily in the meantime. I guess I've accepted it is an unavoidable part of life for us. Thankfully, the episodes have slowed from an average of 15 days to an average of 32 days. Their pattern is predictable, so I don't have to live every moment in fear of it happening, only the few days right around its due date. It is a little like being pregnant, you don't worry about labor the entire pregnancy, but when your due date approaches suddenly everything you experience might be a sign of imminent labor. It is the same with KayTar. As the days stretch closer to E-Day, we look at her more closely anticipating the coming episode. But once the episode hits, it is blue skies again for 30 days or so. Instead of full time worrying, we have condensed it into a few days of intense worrying.

The second answer applies to times like these. With the illness looming, I am in full blown anxiety mode. I feel like Chicken Little. The sky is falling! The shoe is dropping! I can't explain what a number the last strep experience did to me. The other shoe hasn't dropped, not really, BubTar is the only one ill and he is handling it like a champ. There is no crisis, but the threat of it is enough to make my stomach turn. I'm already worrying about hospitalization and she doesn't have a single symptom yet! I don't have it in me to wait calmly right now. All I can see is how things are lining up just like last time. BubTar went to the doctor on Friday. KayTar had an episode on Sunday (when she is due for the next one). Her fever spiked Sunday night/Monday morning. Josh was sick on Monday. We were in the hospital by Tuesday. I just see it playing out over again. I feel like I am re-reading a Choose Your Own Adventure novel, and hoping the subtle changes I can make will keep me from getting the same last page.

Yesterday the pediatrician gave BubTar a prescription for antibiotics, but they were a wee bit expensive and we don't have coverage for him, so I called today to see if she could call in something else for him. She offered for us to just come in for the antibiotic shot this morning, and Josh and I decided it is the quickest means to an end, so we did it. BubTar was displeased to say the least. There was much weeping and gnashing of teeth. After receiving his shot in the tush, BubTar was screaming and sobbing with slobber coming out of his cute little mouth. I was holding him and of course he rubbed his tears and saliva all over my cheek trying to calm himself. I could almost see the little strep army marching towards my mouth. Yum. But I was the last one to get it the previous time, so hopefully my immune system is strong enough to keep me going. We shall see. I bought him donuts afterward to ease his pain, and I think it did the trick. Now all we have left to do is wait and see if the rest of us come down with it.

Poor KayTar wants her BubTar so badly. She will be playing happily and remember he's not with her and she wails "Buuuuuuuuuuuuub!!!!" and just breaks down. Every time she sees him she exclaims "Yay! My Bub!" and wants to run and cuddle him. I can't wait for tomorrow when he is no longer contagious and they can once again wrestle and hug. I love how much they love each other. He is feeling much better, though. He was so miserable yesterday, I'm glad he's on the upswing, but it is harder to convince him to get the rest he still needs.

All in all, we are all okay for the time being. He's had his shot and everyone else is symptom free. I hope it stays this way.

KayTar says hello!