Why I didn't blog yesterday...

Yesterday was Josh's birthday. Last night we recruited both sets of grandparents to babysit, and we drove out to visit our best friends. (My friend L married his best friend J last year.) They live about an hour away from us, but they come in to see us all the time...this is the first time I've been to their house and they've lived there a year. I am a bad friend. The evening was perfectly lovely! We went out to eat at the Cheesecake Factory; we had drinks, appetizers, dinner, and dessert. Usually we chose one of the three "extras", but last night we splurged. We were shocked when J and L picked up the tab, and they were shocked when they saw the tab. It was quite funny! We are going to send them a thank you card with a gift card to Home Depot in it, because they'd never take the money if we tried to give it to them. After dinner, we went back to their house and sat around and talked for a couple hours. It was glorious! Adult conversation! I had good news to share about KayTar, and she had plenty of interesting stories from teaching at her "inner-city" high school. I love listening to her stories about teaching. It is quite the experience! We talked about anything and everything and it was so nice to feel human again.

Once we arrived home, we heard KayTar still being noisy in her crib, so I went in to say goodnight. I can't resist cuddling a jammie-clad baby. Well, I was surprised to see she had thrown up in her crib! She sat right up and signed "BATH!" It was adorable. We, of course, jumped right back into our real life of sheet changing and baby bathing as soon as we got home. *lol* I went out a bit later to shop for Josh, because we didn't spend our dinner budget, so he wanted an extra gift. As I was returning home from Walmart at midnight, Josh calls my cell and says that BubTar was throwing up at his grandmother's and I need to pick him up. We arrived home to Josh rearranging the living room (at midnight?!? YES.) and KayTar still wide awake. It was 12:30 before everyone finally settled into bed.

All in all it was a long night, but we didn't mind. Being out with our friends was so refreshing, that we were all ready for cleaning up vomit and waking in the wee hours with our kiddos.

These are from last night, she is propped up by the couch, but still entirely adorable.





If you're wondering, the couch is no longer in that position do to the rearranging. *lol*

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PS: Is the Blogger Beta worth the switch?

Pride!

OMG! SHE! ATE! THREE! NUGGETS!

Yes, KayTar ATE three chicken nuggets! No gagging! No spitting! Just good ol' fashioned eating! Three of them!

Do I care that these were McDonald's nuggets, possibly the greasiest, most processed food on the planet? No, I do not.

MY BABY ATE!! REAL FOOD!!

*beaming with pride*

I almost danced right there in the restaurant!

I am shaking with excitement! Who knew watching someone else eat could be so exhilarating?

YAY KAYTAR!

Edited to add this video, in which she eats, AND says dog and bye. AMAZING! (In case you are wondering, I do know that I'm obsessive.)

Make an online slide show at onetruemedia.com

What a REBEL!

I wrote an entire post this morning, and then I deleted it in favor of this.

My KayTar has decidely become a toddler this week, except for, you know, the TODDLING. She is stubborn and opinionated, she only wants to eat yogurt and crackers/cookies/cheetos. She was defiant in therapy. Oh, and every time we turn our backs for a moment, she is suddenly missing.

What sort of rebellious, destructive things is she running away to do?

See for yourself.



Oh yes! She is sneaking, up the stairs, into the bathroom, onto her brother's step stool, to covertly BRUSH HER TEETH.



What a rogue dental hygenist we have on our hands.



Be afraid, plaque, be VERY afraid. The toddler years are here to stay.

Sigh

Yesterday after our appointment I had such a headache. I had been so stressed that when it finally dissipated, my head literally felt like it was going to explode from the change in pressure. *lol* Seems odd that such relief can bring such pain.

I can't explain how relieved I am. I know we have a long road ahead of us still, including six months of waiting to find out how much of a problem these lesions are, but my heart will no long stop beating when KayTar goes into one of her episodes. I can rest in knowing that it isn't doing any real damage (beside the pain and vomiting it causes sometimes) and that even if it lasts for days, I know she will come out of it. Those have been my two biggest fears in regards to these episodes. I worried that we were sitting passively by while her brain was being destroyed by these episodes; and when she dropped out of consciousness, I worried that she would never come back to us.

I know that she will most likely continue to have them, because there is no proven way to control paroxysmal torticollis, and that they will probably continue to hold to the two week pattern and continue to lengthen. But it can finally become something we just live with. We can deal with it and go on, without the huge fears that have been plaguing us for the past 3 months. I am sad that she has to endure this, because they are painful for her at times...and I don't know if she understands what is happening to her. But we have peace of mind finally. It is priceless.

We still have worries, but we have fewer worries than we did yesterday. And that is a miracle in itself.

An answer?!?

We saw the neurologist today. He was great. He talked with me for a long time, he read all of her history, he read the notes I made him, and he spent time engaging KayTar. It was a stark contrast to our appointment with her previous neurologist. After looking over everything, he said he thinks it is paroxysmal toricollis. If you are familiar with torticollis (the kind infants have at birth), it isn't that kind. They describe the episodes perfectly. This is the FIRST time anything has ever accurately described the episodes. We never felt that seizure was the correct fit...and it seems as though it isn't.

All of the Internet material on this, is largely case studies and medical journal articles...not much layman's information floating around, so I'll give you some highlights.

"Benign paroxysmal torticollis of infancy (BPTI) is a disorder characterized by recurrent episodes of head tilt secondary to cervical dystonia. Attacks are often accompanied by vomiting, pallor, and ataxia, settling spontaneously within hours or days. Episodes begin within the first 12 months of life and resolve by 5 years."

"A miscellaneous episodic dystonic condition is benign paroxysmal torticollis of infancy, which typically begins in the few months after birth. These attacks may occur once every two or three weeks and last from hours to days. Typically, the head and/or trunk tilt to one or the other side."

"Probably not a true migrainous condition, paroxysmal torticollis means a convulsive contraction or shortening of the neck muscles. This rare disorder is characterized by repeated episodes of head tilting and is associated with nausea, vomiting, and headache."

"Head tilt became less prominent after infancy, replaced by vertigo and eventually by migraine headaches."

"Episodes settle spontaneously, usually within a few hours, but may last up to 7 days, only remitting in sleep."

So all in all, it covers all of our major bases. This is GOOD. It is a diagnosis. If he is correct, we don't have to worry about these episodes damaging her brain, which has been our #1 worry, especially as they have lengthen considerably. Technically, they aren't treatable...but he said the Periactin might help because it is a migraine variant and Periactin controls migraines. He is also running blood tests to make sure her calcium channels are working properly, because if they aren't, it lends itself to this sort of episode.

He is running a more in-depth DNA panel, because this diagnosis only covers the episodes, not the delays or the brain abnormalities.

She had to have 3 needle pokes today to get all the blood. She started crying when we walking INTO the lab...she knew what was coming. It was all very sad. But a worker gave her a teddy bear with a note on it that says "You are beary special." and I thought it was very sweet.

She has a follow up MRI in 6 months, to determine if the lesions are growing. If they are, we are still looking at demyelination and leukodystrophy...although he said he doesn't think that is the case. There is nothing to be done about the lesions at this point...if they grow, we'll revisit that.

No hospitalization! Yay!!!

Five Hours

Today* was exhausting. I am exhausted. I'm hoping to be able to form cohesive thoughts for this post, but I may be aiming a bit too high. :P

KayTar had an episode today. It lasted for five hours, start to finish. She was in pain, she was lethargic, and she was vomiting. She wasn't there. She couldn't respond to us, she couldn't focus or make eye contact, her eyes were glazed over. It was broken into 6 distinct sections, separated by instantly falling asleep. She took a two hour nap in the middle that did not "reboot" her. She threw up 4 times in the five hours. She didn't keep anything down until this evening when it had passed.

This is the only time falling asleep hasn't brought her out of it...even her two hour nap didn't "fix" it.

They started out as 30 minutes long, and now we are up to 5 hours. I want to know what is happening to my baby. I am so tired.

*I wrote this last night, but I was so tired I forgot to hit post.

Reunited and it feels so good

It was the beginning of my eighth grade summer when we broke up. I spent the summer hating him and crying to my friends and seeing Austin Powers 13 times in the theatre. I was crushed. And I was dreading high school, because I had to go to his school.

Over the summer, we talked on the phone one time. We were both in our usual chatroom and we started talking and he wanted to call me. So we talked for a few hours, but I still couldn't forgive him and he had a current girlfriend. When school started, it was all kinds of awful. This was a private school, and there were only about 20 kids in the entire freshman class. One of which was my ex-boyfriend, and another was his current girlfriend. She was popular, because she had been there for years and years. I was the new girl, the enemy her boyfriend used to love. She hated me, and made it known. Her friends hated me on principle.

In Bible, which was one of the few classes I had with Josh, I ended up sitting beside him because of the seating arrangement. I'd hear her saying things like "Don't look at her Josh, I see HOW you are looking at her and you better stop!" I spawned fights between them constantly, even though I wasn't even speaking to Josh most of the time. Honestly, they fought a lot anyway, but I was an added catalyst. School was awful, I had no friends, I was away from all my real friends, and I had to watch him with her every day.

Towards the end of my first semester, I was cast in a drama production. Josh's mom was my drama teacher. He and Girlfriend were in the play as well. I was very shy, but she helped me come out of my shell, and in the process I made friends outside of my grade level. I met people. I found something to enjoy, even if Josh and Girlfriend made out back stage at times. As the play progressed, Josh and I started talking more and more, because we were together after school and on weekends, and his mom volunteered to bring me to and from practices. I stopped hating him so much. When the play opened, Josh was spending a lot of time with me. He was telling Girlfriend he was going to the bathroom, but he was sneaking to my side of the stage. He would just sit and talk to me back there. He was calling me on the phone. Opening night we went to dinner together (with his family). He started telling me he was going to break up with Girlfriend. I was ecstatic.

He broke up with her the last day before Christmas break that year. She was livid. But surprisingly, he did not ask me out. We went to homecoming together, because his mom suggested we go as friends. He kissed me that night. The next day, we were friends again. I was still hoping, but it didn't seem to be going anywhere. One of my guy friends asked me out, so I went for it. I was tired of waiting. It did NOT work out. Once we started dating, he stopped calling me or answering his phone. It was like the guy didn't know HOW to be a boyfriend, and he panicked. While I was dating (but not talking to) this guy, Josh and I went out to lunch with my sister, as friends. We went out to the car while she was paying the bill. I used some Binaca, because I always did after eating..and he said "Can I have some?" I said sure and tried to hand it to him, and he leaned in and kissed me. I broke up with Bad Boyfriend. Josh did not ask me out. A few weeks later, he asked me to go see Titanic. We made out in my room after the movie. Then next week, he was going out with some random girl. I was going NUTS! What was he doing to me?!? I decided to let it go. While all of this was happening, Ex-Girlfriend and I had made friends. Good friends, actually. We had sleepovers every weekend, we spent time together after school, and her friends had become my friends.

Then in April, four months after he broke up with Girlfriend, he asked me out. We were at a school dance performance, he was on one side of me, and Ex-Girlfriend was on the other side of me. He was writing on a program and we were passing it back and forth. I panicked. I had let it go! I was done! And here is he asking me out, while I am sitting next to Ex-Girlfriend?! After the performance, I told Ex-Girlfriend. She ran out of the auditorium sobbing. I calmed her down after a while, and she ended up staying over. I told her I didn't know what I was going to do, because of what he had done...but I told her I had feelings for him in spite of it all. I told him I needed time...he had taken his already. I waited three weeks to decide him. After Bible class, I tapped him on the shoulder and said "Yes." he said "Yes what?" I said "To your question." and it was done. He told me that he had decided that morning to tell me to forget the whole thing, he was tired of waiting. I got in just under the wire.

Kiss and Break Up

This next portion is going to be fragmented, but it is necessary filler for the remainder of the story. :)

As we got to know each other, I found out that his parents taught at a private school that he attended...this was the very same private school my mom had decided I was going to for HS, although she didn't tell me until I mentioned where he attended.

The week after we met for the first time, I was invited to his house for dinner. His mom and sister drove him to my house to pick me up. I remember my older sister asking him if he ate meat, and then yelling "Oh God, another meat eater!" or something to that effect. It was very odd. We ate lasagna at his house, which I swallowed whole because I cannot stand to bite into onions (my parents didn't cook with them for that reason). We watched Grease with his family. I remember hanging out in his room for a bit and him showing me a computer game, DOOM, which he was in love with. He taught me how to play, and sent me home with a copy of it. I had no interest in video games, but I had interest in him and having an excuse to call and ask him questions about the game. His family called me "Cyberchickie" behind my back, I didn't find out about that until a couple years ago. :)

We started seeing each other regularly. One weekend we went to the mall with my friends. My mom told us under NO circumstances were we to split up from the rest of my friends. Well, we decided to see Beavis and Butthead, but my friends didn't want to. So they shopped while we saw the movie. We held hands for the first time in Beavis and Butthead Do America...oh so romantic. We shared an arm rest and he "accidentally" slid his pinky on top of mine, and when I didn't move my hand he grabbed it. One of my friends got antsy and called my mom and asked "Did you pick up Kyla and Josh yet?" I think she was mad at me for ditching her, because she couldn't have possibly thought my mom would have left her there. We were in TROUBLE. Oh, and also, I wasn't allowed to see B&B, so we said we went to see 101 Dalmations.

That night, I wasn't feeling well, so I took TheraFlu, which makes me HIGH AS A KITE. I went to bed and had an odd dream. I could only remember pieces, but I remembered getting out of bed and standing in front of the computer downstairs. Evidently, that night I got on the computer and chatted with Josh for a couple hours...and he asked me out. I STILL don't remember this, and he STILL thinks I'm lying about it. Somehow it came up that I didn't think we were going out and he got so upset. He thought I had changed my mind and was trying to get out of it. So I told him to ask me again, and he did, and I said yes.

The first time we kissed, we were behind a local elementary school, and he said "Kiss me!" SO dramatically...I did, even though I thought it was incredibly cheesy.

The first time we REALLY kissed, we were in my den watching Third Rock from the Sun.

We dated for 6 months. It was a great 6 months. I never even remember fighting. Then we went to a theme park with a couple of my friends. He said his friends were meeting us there later. I went on a ride with my friend L while my other friend and Josh waited for us outside. When I came out, he was gone. My friend J said he went to meet his friends, but said he would be back in 15 minutes. So we waited 30 and he never showed. I was a little upset, but we decided to walk around and see if we could find him. We walked for a while, and passed a restaurant...Josh stuck his head out and said "Hey! We're in here." and it was he and his friend T and 4 girls! I was soooo pissed.
I said "We're going to ride Batman, want to come?"
Josh: "No, I can't they are eating."
So I left with my friends. We saw him once for the rest of the day...I swear he had his arm around this girl, but he moved it rather quickly.
He said: "Are you going to the water park?"
Me: "Nope."
Him: "Okay."
And we walked apart. When it was pick up time, he didn't show, so we talked L's mom into leaving. We said "He can get a ride with his new friends." It felt great.
When I got home I called his house to see if he made it home. His mom said no and I offered to go back and get him. She was upset, but she said she'd send his dad out for him.

We tried to make up before I went to Alaska for two weeks, but I was still very upset.

While I was out of town, a mutual friend emailed me and told me to go look at Josh's webpage, but be sure to follow all of the links. So I did. I clicked on "My Girlfriend's Page" and it wasn't MY page. I was LIVID. I couldn't talk to him because I was in AK...but when I got home I tried calling him. I couldn't reach him. I thought he was avoiding me, he was actually in Florida. When he finally called me, I told him it was over and I knew, and I said "I don't love you anymore." He still says "That was so mean, Kyla, you really hurt my feelings." *lol* He deserved it.

As time passed, I discovered it wasn't just that 1 girl. He had taken someone else to his homecoming. He had kissed this other someone. There was WebPage girl. There was Real Life Girl #3. And Real Life Girl #4. Oh yes, 4 of them!

This is where 13 picks up.

PS: Don't hate him too much.

We interrupt your regularly scheduled program

For this very ADORABLE photograph!



That is all. :)

Or Maybe More ;)

We decided to meet over Christmas break one day that year, at the mall, because his mom was already going there for an ophthalmologist appointment, and my friends and I were bored and thirteen year olds LOVE the mall. We were still on the phone and hadn't yet decided on a place and time to meet, when someone called in on our other line. I switched over and it happened to be a coworker of my dad's in Alaska (my dad worked in Alaska)...so Josh and I had to hang up. We never got around to setting up a time or place in the mall to meet, but my friends and I went anyway, because we were thirteen and OMG! THE MALL!

As soon as we arrived, my friends started in with the endless refrains of:
"Is that him?"
"Ooooooh, is THAT him over there?"
"What about him?!?"
To which I replied,
"I have no idea, I've never seen a picture of him before." (these were the Internet wilderness days...there was no Flickr)


We shopped for a while, and then I started to get hungry, so we headed to the food court. As we entered, a guy passed me with two slices of pizza.
Me: "That's him."
Friends: "Shut up...how do YOU know, you've never seen his picture! Plus that guy didn't even say anything! And Josh has blonde hair...that guy doesn't."
Me: "Whatever, that's HIM. Go ask him...I'm going to get Arby's."

35 seconds later, my friends are back.
Friends: "OMG! Its HIM! We said 'Do you know a Kyla?' and he said 'Yes.' IT'S HIM!"

I grabbed my Arby's melt with Cheddar and my curly fries and went over to his table. We said "Hi." and not much else while my friends intently stared at us. After eating, we ditched my friends and walked around the mall together.

Don't ask me how I knew it was him, because I can't tell you. He didn't say a word as he passed me. I don't even think our eyes met. He was just some guy (without blonde hair, the liar!) walking past me with pizza...and I knew that he was Josh. spacemanZERO. I just knew. It is the single strangest thing that has ever happened in my life. I will never forget that day, what he was wearing, seeing his smile for the first time, or that feeling of knowing who he was before I had any reason to know who he was.


And so ends the meeting portion of our saga, join us tomorrow for the next installment....you know you can't wait to find out what this:


has to do with anything.

Friend Seeking Friend

When I was in the eighth grade, we got The Internet. I'm totally dating myself here guys, now you all know I am a baby. I'm sure not many of you had The Internet in the eighth grade. It was so exciting! I could pretend to be sixteen! Every thirteen year old really wants to be sixteen, because they are so MATURE! And respected! I spent the first 3 years of my Internet life as a 16 year old. Luckily, no one seemed to notice. But really, that is neither here nor there. In the midst of pretending to be my brand new mature, respected, sixteen year old self...my friends and I began chatting it up with real live people we didn't know. BOY people. I should mention here I had a 3D boyfriend, but he was only thirteen. When you are Internet-sixteen, real live-thirteen is quite a drag. So Friday nights, my best friend came over and we pretended to be super cool sixteen year olds who flirt with boys online. We had a blast. Of course, Saturday we still rode bikes around the neighorhood, but Friday nights? We were adults.

We heard about a website for our local radio station, called...(wait for it)...CyberLove. It was set up like a mail station, you set up a mailbox with a profile, and people could search and exchange messages. Because I had a boyfriend (stupid thirteen year old boyfriend), I was honest (ha!) and put my box in the "Friend seeking Friend" section. I think I put that I was fifteen, because this was local, and what if I met someone? Lying that you are three years older is TOO much, but lying about two years could just be a mathematical error, I guess. I think my SN was a character from a Christopher Pike novel, I didn't even know how to pronounce it, I just liked the character.

I found a boy, who was also "fifteen", and I emailed him. I have no idea what I said, but he replied. His name was spacemanZERO. He lived in a neaby suburb. He loved the Smashing Pumpkins and computer games. He was nice. We exchanged a few messages before we divulved we both had significant (I use the word loosely) others. His girlfriend was long distance, he was introduced through a mutual friend and they had met only one time. My boyfriend, well, he used to burp and blow it in my face at the lunch table. We continued to exchange emails, because we were "Friends Seeking Friends" (there isn't anything wrong with that!) and we both knew about the other's other.

Then SHE broke up with him! "OMG, Josh, how COULD she?!? I'm so sorry.(not!)" And inexplicably, the burping in my face became too much to handle...and I dumped Burpy. We were FREE...we could have, say, moved our profiles to the "Seeking Hetero Relationship" section, if we wanted. Instead, we started calling each other on the phone. We talked every day. After a few weeks of the phone business, we decided to meet.



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TO BE CONTINUED!

*evil laughter*


His avatar.

13

I remember nights in junior high school, lying in the hammock on the deck in my backyard with my best friend...crying over a certain young man who had broken my heart. You all fondly know him as Josh. I remember being completely honest in that moment. I felt like I was drowning, and talking with L made me feel infinitely better. She just sat with me, armed with sympathetic head tilts and hugs, and the act of her just listening relieved my pain. She didn't have to say anything, although when she did, it was always perfect. "What a jerk. I can't believe he did that to you. I'd kick his ass if I saw him again." It was more than I could have asked for.

I've been thinking about it often lately, because I've never felt more emotionally needy than I do at this moment, and I cannot make myself open up like that. I've attempted to open up, but I sit in silence. At times my mind is screaming so loudly with the need to tell someone how I feel, that I can't even make small talk anymore. I just sit there silently, holding my breath. I've written emails, honest ones, to people I love and have always trusted in the past, but I delete them. I don't understand why I can't do this. It was so easy as a child. What is the difference? Do I think I need to be strong? Or that I will be judged for how I feel? Where does this subconscious self-censoring impulse come from, when we consciously know that we need other people in our lives?

I've agonized over this for days now, days filled with silence and deleted emails. I think I am afraid. I'm not afraid to be seen as weak, I'm afraid of what someone I love will say. I know the pain of what I am going through is unavoidable, but the added wounds from well-meant words are avoidable. The beauty of those moments with L was in her ability to listen, without saying much at all. She did not try to fix how I felt or explain it to me. She did not tell me that God had a plan. She did not give me advice at all. She just listened and accepted how I felt. She knew she was helpless to change what had happened. Somewhere in our growing up, we lose that ability, the ability to listen without trying to help or to change things. But in the moments of our deepest need? All we need is a listening ear and a warm shoulder to get us through.

In those moments when someone bares their soul to you and you can't think of a thing to say to them? It is because you aren't supposed to say anything; there is nothing you can say. It is enough to simply be there, listening and loving them. That is all they need. When we grow into adulthood, we feel like there HAS to be something we can say or do to fix these things, but there isn't. If you know someone who is hurting, remember how to be 13 and helpless; because they don't need help, they just need you.




PS- I love you guys. You have been my L during these rough days.

November

Today is the first day of November, also known as NaBloPMo or NaNoWriMo. I haven't decided to participate in either of these, because this month promises to be a challenging one for me. Of course, there's no great blogging-fodder than a challenging month, so I haven't decided against it either. It may depend on what kind of high-speed access I have while in the Children's Hospital. Either way, I've decided to give it a try and see where we go, unofficially of course. If it goes well, at the end of the month I'll make it official. :)

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November.

It has been 90 days today since the doctor's appointment that changed my life.

90 days filled with:

10 trips to the Children's Hospital
10 therapy sessions
8 needle pokes
6 doctors
5 seizure-like episodes
4 developmental evaluations
2 ER trips
2 panels of blood work
2 sets of immunizations
1 EEG
1 CT scan
1 MRI
1 neurologist appointment
1 feeding disorders appointment
1 ophthalmologist appointment
0 answers


The next 90 days are equally promising:

37 therapy sessions
5+ trips to the Children's Hospital
2 neurology appointments
2+ needle pokes
1 psychological developmental evaluation
1 genetics appointment
1 hospitalization
1 extended EEG
1 MRA
1+ panels of blood work
1 clotting test
1 pediatrician appointment
1 set of immunizations

This is what the calendar already holds on the very first day of this 90 day period, stay tuned to see exactly how much we can fit into 90 days. I hope that by the end of it all, we can add this proudly to the list:

1 ANSWER

The fear creeps in

After I speak with the pediatrician, it takes me a few days to fully digest the information. I lay awake at night and replay the conversation in my head. I always remember the major things immediately; but less critical things, like the names of certain possible diseases or things to research, they come to me later. Yesterday I had an "A-HA!" moment. I remembered the pediatrician named some disease or condition that involved the term "leuko" when she was talking about demyelination, so I typed "leuko demyelination" into Google and came up with the answer. Leukodystrophy . This scares me. From what I have read, there is no cure for these types of disorders. They are progressive, and they end in...God, I can't even say what they end in. They end in my biggest fear. The fear that whispers in my ear. The fear I try to practice facing in my mind, but can't. The fear that makes me sick to my stomach to dwell on. I can't tell you what that fear is, because I can't bring myself to say it aloud, but you know what it is. Saying it aloud gives it validity and I cannot do that. This is as far as I go with it, and then I will tuck the fear away again. These disorders are just one of the possibilites that the doctors are looking into, there is no need to be fearful yet...but still it creeps in.

Help me!

I know I have some hospital-veteran readers, at least on occassion, and we are about to gear up for a hospital stay here in the near future. This is the calm before the storm, so to speak. Josh goes back to work tomorrow, and we start with this week's round of appointments, which might end with her hospitalization...if not, it will be the following week. I'm trying to get prepared. And so, I look to you for help in my preparations...even if you aren't a hospital-vet, you input is much appreciated.

What do I need to take care of here at home before we go?

Is there anything I need to do in advance in anticipation of my not being here?

What should I pack and bring with us?

How do you entertain a 20 month old in the hospital for a long period of time, especially when they are running batteries of not-so-enjoyable tests?

Does this sound like a workable scenario?
I will have my mom watch Nathan during the day while Josh works, take him to and from school, and Josh will pick him up when he is off of work, they can come visit at the hospital, and then the two of them will go home. I'm just planning on being there for the duration.

Is there anything I need to know?

Thanks in advance!

The Sweetest Thing

Well, one of the sweetest things at least. :) Today during naptime KayTar was having a hard time sleeping, but she wasn't quite ready to be awake, so I put her in bed with me. This is a rare event, because the girl likes her own space while sleeping. She ended up falling asleep again and I just laid beside her and watched her dreaming. A few minutes later, she started signing in her sleep! I know some people talk in their sleep, but I had never thought about those who speak sign language signing in their sleep. It was incredibly adorable. She was so sweet, all rosey cheeked in dreamland, signing about apples and cheese. :)

Just so you feel the full effect of her adorable-ness, I'll let you experience a waking version. :) Enjoy!

Make photo slide shows at onetruemedia.com

Why I love this vacation

We leave our room a mess and when we get back, it is clean!

We go eat Ben and Jerry's almost daily...and it is here in the hotel, no leaving required!

We can go buy chocolates at Godiva whenever the mood strikes.

We eat out for every meal.

People will deliver said-food to our room.

All food, chocolate, and ice cream is being paid for by someone else...it makes it taste so much sweeter. :)

We have no obligations, no doctors to visit, no therapy sessions, no schlepping children to and from school.

We don't have to do laundry or dishes or grocery shop.

I took a bath...a real, mostly quiet, mostly uninterrupted, relaxing bath! (of course BubTar was shooting at me with Zurg's blaster under the bathroom door, but who cares *lol*)

We have mandatory nap time...yes, I get to take a nap as well. :)

Josh and I lay in bed together at night and watch mindless crap on television.

We went to Disney World!!

It is GLORIOUS!

Split Personalities

I've received a few compliments on how well I'm handling our news. That is true to a point. I feel like I am two people. One Kyla is huddled in the corner rocking herself back and forth and the other one is telling her to shut the heck up because there is no time for that sort of behavior. She's the one in charge at the moment. I don't have time to mourn what might have been, or become paralyzed in fear over what might be. My job is to take care of Katie, to be strong enough to see her through this, to keep my family functioning like it should. My job is to make sure we have a nice vacation, because this might be the last one for a long while. As I write this, the scaredy cat in the corner says "It might be the last one with Katie." but this is why she isn't allowed to talk.

I don't know what these lesions mean, I don't know why they are there or how we are going to have to handle them. Some people (not doctors) are mentioning brain surgery, which makes the scaredy cat start climbing the walls. "The thought of someone opening up my baby's brain is too much." is what she says as she rocks herself. The doctors haven't given me projected courses of action, and now is not the time to worry about those possibilities...there is no room for needless worying. I know at some point, things will be too much and emotions will come out, but for as long as I can maintain, I have to try. I don't want anyone thinking I am cold towards what is happening, but I just can't allow myself to lower the walls right now. We are at a pivotal point and we all need to stay strong...I have a feeling there is a long road ahead of us.

The results are in...sort of...

After I wrote my post last night, the pediatrician returned my call. She apologized and said she goes out of state twice a year and leaves her pager, and yesterday was one of those days. She said I can have her paged any time, even if she isn't the on call doctor. She is amazing, in case I haven't explained that to you all lately. Amazing. If there are pediatrician of the year awards, I need to nominate her, because WOW. She is wonderful. She said she would call and get the MRI results first thing in the morning and call me. We were walking around the hotel (which isn't a hotel as much as a built in zoo/theme park) when she called. I ran back into the lobby so I could hear, because the waterfall was a tad noisy.

The MRI wasn't clean. She has lesions on 3 of her lobes; both parietal lobes, and her frontal lobe. This explains the speech problems and motor function difficulties. What is unclear is what the lesions are and what is causing/has caused them. She mentioned metabolic diseases, in-utero infection such as CMV, and even stroke. She said there were no calcifications on the CT scan so stroke is unlikely, but not impossible. She couldn't get in touch with our current neuro, but she did contact a friend of hers who is a neurologist in the same clinic. She has been discussing KayTar with him for a while now, and she is referring us to him when we return. She and I both feel like the current neurologist dismisses our concerns and already has his mind made up. She said that when she calls him she has to get everything out in one breath because as soon as she takes a breath he says "Oh, Dr. I think everything will be okay." When I saw him in the clinic I felt like it was a totally wasted appointment because he already had his mind made up. The pediatrician said that she trusts the new neurologist and thinks it is a good idea to get more eyes in there. He will take good care of KayTar because he is friends with her pediatrician.

When we return home, KayTar sees the opthomologist on Monday, and then later in the week we will see new neurologist. After he examines her, she will be admitted to the hospital for testing. They will be doing more blood work, clotting tests, an extended EEG (24 hours), an MRA to look at her arteries/veins in the brain, and whatever else strikes their fancy.

I am thankful the MRI came back showing us something, even though it felt like a punch in the gut. If it was clear, we would be lost, treading water, no place to go. Since it isn't we have a direction, things to look into, tests to narrow things down. I am thankful for this week, the break from everything, because when we come back it starts up in full force. I am thankful for our pediatrician and her genuine concern for us and KayTar. I'm thankful that we aren't quite as lost as we were yesterday.

Panic in the Garage

We spent the morning packing and preparing for our big trip. We got out the door in plenty of time and everything was going swimmingly until we arrived in the parking garage at the airport. KayTar started sqwaking from the backseat, which is pretty odd for her. When Josh took her out of the car, we both knew something was wrong. Her eyes were rolling around in her head, her head was tilted, and she wasn't aware of anything. I can't explain this moment to you. We both (even Josh the rock) panicked. We are about to unpack the car to get on a shuttle to go to the airport to get on a plane for a 2 hour flight. And yet here is our baby having a seizure, or whatever it is. This is a key moment. We freeze. Josh says "I guess we aren't going." For some reason, maybe because this "vacation" is actually in part, a conference for Josh's job, maybe because I couldn't stand the thought of losing this vacation when we were so close to getting away- I was the one to calm him down and take charge....this never happens. Never. I grabbed his blackberry and called the pediatrician. Of course it is Sunday, so I get the answering service, who pages the nurse, who informs me that my doctor is not on call this weekend. She offered to page Dr. OnCall, but we declined. We've done that before...by the time we are done explaining months of testing to Dr. OnCall, crisis has been averted...or he has something helpful to say like "Gosh, I don't know." I beg the nurse to page our doctor, she does, but explains she probably won't answer. She didn't answer. But while we were waiting on the call, we decided to proceed....hoping it would pass and life would go on, like it tends to do, while simultaneously hoping for the pediatrician to answer our call. Neither really happened, but because we were so far into the process of going, we just stayed the course.

This was a weird episode (like any of this is "normal"). She came in and out of it several distinct times. It was still similar though...eye rolling, head tilting, altered state of awareness. This time there was no pain, but she didn't seem to have the total drunken baby thing going either. I think today was the most "typical" seizure behavior we've seen...but it is all so closely related. Variations of the same. They were close together and very pronounced for about an hour, and then tapered off...but she wasn't back to herself until she woke up after the plane landed, roughly 3 hours after it all began. Its like her brain forgets how to function until she falls asleep and "reboots".

So tomorrow I will be calling the pediatrician, to let her know, and I suppose I'll get those pesky MRI results while I'm at it. Who are we kidding, I'm not strong enough to call and NOT ask about the results.

On a slightly different note, I changed my voicemail message to the following before leaving: "This is the Tar residence. We are currently out of town. If you are a doctor or doctor's office calling in reference to KayTar, please call me on my cell phone at XXX-XXX-XXXX. Thank you." How weird is my life?