Thursday, November 30, 2006
Here is why:
1. KayTar had her first speech therapy session today. It was great! The therapist just kept saying how incredibly smart she is, and how she hasn't ever seen a kid pick up sign like KayTar has. It was so nice to have someone else (a stranger, no less) tell me what a smart little girlie I have. She said KayTar looks like a completely different child on paper and she was so impressed with meeting her in person! She said the way she has been picking up signs shows how much she is actually understanding. The theory is that the area of the brain that hears/understands language (temporal lobe) is not damaged (no lesions), but the area controlling spoken language does have damage (lesions), which might be why she has so much trouble with that. But my little girl is a smarty pants! :)
2. It is cold here! The temperature dropped from 80 degrees to 30 degrees. This pleases me to no end. Cold weather makes me feel alive! And it always brings the hope of snow, which is the most magical thing that can happen! Oh, how I love the snow!
3. BubTar has had green lights at school for two days in a row! Yay BubTar!!!
4. It is girl's night! So I get to go out with my best friends this evening!
5. Josh has a vacation day tomorrow, and I love it when he is home with us!
6. I spoke with the PT about KayTar's walker and she agrees with giving it a try. KayTar should be "walkering" soon!!
Random, I know. But all of it makes me so happy!
Monday, November 27, 2006
So, we are now officially in a waiting game. Today I am taking her for what might be her last round of labs for a while, to rule out Rett Syndrome and lead poisoning. We are going to be getting her a walker, as well. So even though she is not walking, she will be "walkering" soon.
Friday, November 24, 2006
As for what I'm thankful for? I am thankful that this won't last forever. ;)
See you guys as soon as I feel better. I hope everyone had a wonderful day yesterday.
Saturday, November 18, 2006
I called the pediatrician to ask her about these things. She said that they got these results a few weeks ago and she called to discuss it with him and he said "Oh, Dr. H, you worry too much." and blew her off. She didn't know why he had run the test in the first place, so she didn't know what the follow up needed to be. She called and discussed it with Dr. NewNeuro and he didn't know how to follow up either because he didn't know the reason for the test. So Dr. H is going to talk to Dr. NewNeuro over the weekend and determine the best course of action; and she's going to write Dr. OldNeuro a nice letter thanking him for his time and letting him know he's off the case. She said either way it won't hurt to have her lead/iron levels checked.
So we got more news that means nothing to us...everything is nonspecific.
We now have:
An abnormal EEG
An abnormal CT, that was later decided to be within normal range
An abnormal MRI
Abnormal erythrocyte protoporphyrin blood test
Slightly elevated blood lactate levels
Put it all together and what do you have? Nothing useful, evidently.
We seem to be stuck in an endless cycle of testing. I thought KayTar would have a break from the needle poking next week, but it doesn't seem to be the case. I wish we could get one clear cut result. Every time we get a piece of information, it just makes a more confusing mess. It adds a possibility, instead of narrowing things down. I hope we get somewhere with this next round of testing.
Wednesday, November 15, 2006
Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."********************************************************
We're making it, but at times I look around and wonder how we got here, so far away from where we thought we would be. It seems like everything is different here in Holland. But on nights like last night, when Josh reached for my hand in the dark and just held it until we fell asleep; I know some things will always be the same, even in Holland.
Tuesday, November 14, 2006
Josh: You know we spoil her, right? She's spoiled.
Kyla: She's a baby! And its positive reinforcement, she asks for it, we give it to her. And its only cookies. Its not like she's signing "Pony" and we're running out to buy one for her.
Josh: What if she signed pony, what do you think we'd do?
Kyla: Well, hippotherapy is really good for these kids...so it would be justifiable...
Josh: Hippos? I thought we were talking about ponies.
Yesterday, at the pediatrician's appointment.
Dr. H: Dr. L called me right after you left on Wednesday, and I had JUST come into an exam room with angry parents who had been waiting because we were running behind. The nurse told me he was on the phone and I told the parents, "I have to take this." And then I talked to him for twenty minutes! But Katie's the priority right now, what could I do?"
This morning, upon fishing KayTar out of the bathroom for the 25th time.
Kyla: What do you want in here? That orange toothbrush? If we buy you your very own orange Aquafresh toothbrush, would that make you happy?
KayTar: *signs happy*
We're on our way to Target for a toothbrush, in case you were wondering.
Sunday, November 12, 2006
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*
PS: Is the Blogger Beta worth the switch?
Friday, November 10, 2006
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?
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.)
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.
Thursday, November 09, 2006
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.
Wednesday, November 08, 2006
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!!!
Tuesday, November 07, 2006
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.
Monday, November 06, 2006
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.
Sunday, November 05, 2006
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?"
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.
Friday, November 03, 2006
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.
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.
TO BE CONTINUED!
Thursday, November 02, 2006
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.
Wednesday, November 01, 2006
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
5 seizure-like episodes
4 developmental evaluations
2 ER trips
2 panels of blood work
2 sets of immunizations
1 CT scan
1 neurologist appointment
1 feeding disorders appointment
1 ophthalmologist appointment
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 extended EEG
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: