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.
Monday, November 06, 2006
Sunday, November 05, 2006
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.
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.
Friday, November 03, 2006
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.
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.
***********************************************************
TO BE CONTINUED!
*evil laughter*
His avatar.
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!
*evil laughter*
His avatar.
Thursday, November 02, 2006
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.
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
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. :)
**********************************************************
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
**********************************************************
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:
Monday, October 30, 2006
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.
Sunday, October 29, 2006
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!
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!
Thursday, October 26, 2006
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!
Just so you feel the full effect of her adorable-ness, I'll let you experience a waking version. :) Enjoy!
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!
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!
Tuesday, October 24, 2006
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.
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.
Monday, October 23, 2006
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.
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.
Sunday, October 22, 2006
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?
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?
Saturday, October 21, 2006
To know? Or not to know?
The MRI went well! I was dreading the IV, because they have such a difficult time finding a vein and drawing blood, and the veins in both of her hands were shot from Wednesday. The nurse put the IV in her wrist on the first poke and all in all it was a lot less traumatic than the blood work. They wrapped her good hand so she couldn't tear at her IV, because she HATES having anything stuck to her. She tears off everything, bandaids after shots, stickers, she was even able to take off her hand wraps on Wednesday.
Here she is trying to pull on her IV with her wrapped hand:
Once we went to the MRI prep room, the anesthesiologist gave her the shot of the magical white medicine through the IV- KayTar let out half a yelp and was out like a light. It was so amazing! The whole thing took about 45 minutes and then we were called back to recovery. While she was still under, her heart rate dropped a couple times and her O2 levels dropped as well. Her heart/lung monitor alarms went off three or four times. It was a little scary! But as soon as she woke up everything went back to normal. She jabbered all the way home and has been perfectly fine. All in all, I'd take an MRI over blood work any day.
We don't have any results. Because we had the MRI on a Friday, our doctor won't have the results until Monday, and we will be out of town from Sunday to Saturday. I want to call the doctor on Monday to get the results, but Josh wants to let it be until we get home. He thinks the vacation should actually be a vacation. I don't think he wants to get bad news and have it ruin the week...or get a clear result and be frustrated the rest of the week. On the other hand, I don't know if I can actually make it through the week without knowing, when knowing is only a phone call away. Last night I was so exhausted, I've been living for yesterday for two months now, and having it finished was such a relief...I know we still don't have the results, but having our part finished was such a load off. I haven't felt that tired in months...it felt like I was off duty in a way. It was a good feeling. It is a good feeling. Maybe I'll try and hold on to that feeling and make it through the week. Maybe.
Here she is trying to pull on her IV with her wrapped hand:
Once we went to the MRI prep room, the anesthesiologist gave her the shot of the magical white medicine through the IV- KayTar let out half a yelp and was out like a light. It was so amazing! The whole thing took about 45 minutes and then we were called back to recovery. While she was still under, her heart rate dropped a couple times and her O2 levels dropped as well. Her heart/lung monitor alarms went off three or four times. It was a little scary! But as soon as she woke up everything went back to normal. She jabbered all the way home and has been perfectly fine. All in all, I'd take an MRI over blood work any day.
We don't have any results. Because we had the MRI on a Friday, our doctor won't have the results until Monday, and we will be out of town from Sunday to Saturday. I want to call the doctor on Monday to get the results, but Josh wants to let it be until we get home. He thinks the vacation should actually be a vacation. I don't think he wants to get bad news and have it ruin the week...or get a clear result and be frustrated the rest of the week. On the other hand, I don't know if I can actually make it through the week without knowing, when knowing is only a phone call away. Last night I was so exhausted, I've been living for yesterday for two months now, and having it finished was such a relief...I know we still don't have the results, but having our part finished was such a load off. I haven't felt that tired in months...it felt like I was off duty in a way. It was a good feeling. It is a good feeling. Maybe I'll try and hold on to that feeling and make it through the week. Maybe.
Friday, October 20, 2006
Anticipation...
As is the night before some festival
To an impatient child that hath new robes
And may not wear them"
The MRI is this afternoon.
Wednesday, October 18, 2006
You LOST her blood?!?
This morning I was awakened by a phone call. Of course I made Josh answer it while I pretended to sleep, but he nudged me and handed me the phone and it said Children's Hospital on the caller ID, so I took it. It was the lab. Evidently, when I took my poor sweet baby in last Wednesday they "routed one tube of blood incorrectly" and by the time they found it, it was too old to test. So I had to take my poor darling in again today. She was stuck two more times. Since last Monday, she has been stuck 5 times, all for the SAME blood work...and Friday she gets to have an IV for her MRI. I am so very sad. She looks like a tiny burn victim or a very cute boxer, I'll let you decide.
They offered to send a phlebotomist to my house...but I really didn't want to invite that kind of trauma into my home...and I also feel like the workers are at the Children’s Hospital are as gentle and as kind as they can be with her. We've turned it into a bit of a date, we go eat lunch in the cafeteria (which has yummy food like Chick Fil A), KayTar pretends to eat fries while I actually do eat my fries. We watch the waterfall for a bit, then we go visit the fishies (she tried hugging the fish through the tank today, it was very sweet). Last week they were having a carnival, so we went to visit the clowns and she got some neat stickers. And we wrap it all up with a nice round of needle poking and we are on our way home. It is still miserable, but it takes a tiny bit of the edge off, at least for me. I know she's having a little bit of special fun before the really awful part happens.
On a completely different subject, our dog jumped up onto BubTar last night and knocked his tooth loose! It was such a weird freak accident. I think he's going to lose it soon, he can't stop wiggling it. He's horrified that it is wiggly, but he just can't stop himself. I'm sad my baby boy is going to lose his first tooth already!
They offered to send a phlebotomist to my house...but I really didn't want to invite that kind of trauma into my home...and I also feel like the workers are at the Children’s Hospital are as gentle and as kind as they can be with her. We've turned it into a bit of a date, we go eat lunch in the cafeteria (which has yummy food like Chick Fil A), KayTar pretends to eat fries while I actually do eat my fries. We watch the waterfall for a bit, then we go visit the fishies (she tried hugging the fish through the tank today, it was very sweet). Last week they were having a carnival, so we went to visit the clowns and she got some neat stickers. And we wrap it all up with a nice round of needle poking and we are on our way home. It is still miserable, but it takes a tiny bit of the edge off, at least for me. I know she's having a little bit of special fun before the really awful part happens.
On a completely different subject, our dog jumped up onto BubTar last night and knocked his tooth loose! It was such a weird freak accident. I think he's going to lose it soon, he can't stop wiggling it. He's horrified that it is wiggly, but he just can't stop himself. I'm sad my baby boy is going to lose his first tooth already!
Tuesday, October 17, 2006
A glimpse of the past
The delete key has been a bit overactive lately. I can't seem to control it. You see, I haven't really been missing, I've been writing posts, leaving them on my screen all day stopping to reread them several times per day, and then eventually hitting the delete key. I think I've been mildly depressed, which is probably why I keep coming up with crap that deserves to be deleted. *lol* So I'm committing this time...this post will survive!
Last week, Josh pulled out the old camcorder (this isn't going where you THINK it's going, you dirty people) and transferred the contents of the tape to the TiVo so we can put it on DVD and he can reuse the tape. The tape was wonderful, it was footage covering BubTar's third Christmas (he was 2 years old) when I was perfectly and plumply pregnant with our dear KayTar, all the way through her birth, up until she was about 8 months old. BubTar was adoarable! He just made me MELT. With his gruff little baby voice and delicious baby fat, I almost cried with joy at seeing my dear baby boy again. He was hilarious...he was obsessed with talking to himself in the viewfinder, we have about 35 shots of the side of his head as he leaned in CLOSE to the viewfinder to talk to the "udder BubTar" (translated to mean "other"). I was shocked I could still understand his garbled BubTar-ese...Josh kept looking at me for translations. It was amazingly cute. Even the way he said KayTar's name was glorious.
KayTar was beautiful, as always, but rewatching this old footage we realized something...all was never quite as it should be with our sweet KayTar. In one video, she spontaneously gagged and threw up (it looked exactly like the shaving cream reaction, it was weird)..the way I reacted made it seem like she did this often. In a segment from when she was about 5-6 months old, she was laying on our bed, not rolling or sitting or crawling, just laying looking at her hands in thay very newborn way. Her cousin was crawling all over her and looking at her and babbling at her, and KayTar just laid still examining her own hands. From the dialogue, I could tell my sister was maybe a little concerned and just joking about it...and I was jokingly defending her...at the time maybe I knew something wasn't quite right, but we just thought she was taking her time, as apposed to our BubTar who was always advanced. It difficult to compare two children, especcially is one is advanced. I think that is why it took us so long to really decide to push for answers with KayTar...for a long time we just thought she was just taking her time, and it seemed "off" to us because BubTar went so fast. Of course, now we realize that wasn't the case. I asked friends from her birth club to post videos of their children at the same ages we had clips of KayTar, just for comparison purposes. The babies were largely sitting up during the period KayTar was still staring at her little hands, and cruising by the time KayTar was very wobbly staying propped in a sitting position for long enough to snap a picture. The videos of last November of the other kids, looks just like KayTar now.
It was a good discovery for us, lately Josh and I have spent quite a bit of time discussing things and one of the topics is whether it has always been this way, or if it happened all of a sudden, now we know...it has always been this way. I think the gap has grown more as time has passed, and it finally became something obvious, something we couldn't overlook anymore. I wonder what might have happened if we discovered all of this earlier, if we had been able to help her earlier what sort of difference it might have made...but I realize that doesn't matter. This is where we are today, and we are doing all we can do for her. There is no reason to look back at what might have been. StupidPedi might have to do some looking back, though...if we ever get a diagnosis, I think Josh is going to force him to do some looking back...the kind of looking back you do when you are being sued for negligence or malpractice. Pediatricians aren't only supposed to keep their patients well; they are supposed to make sure their development (physical and mental) is on track. He let every bit of this slide for over a year, and he also let her fall off the growth chart. He perpetually told us everything was fine....he disregarded all of our concerns. The month after she had her first visit with our new amazingly wonderful pediatrician, he filled out a form that said:
"KayTar has no birth defects/congenital/genetic/metabolic/or developmental abnormalities.
She has no conditions requiring therapies (speech, occupational, physical, or psychological).
She has no conditions requiring a specialist referral or consultation.
She has no conditions requiring a hospital stay, outpatient procedure, or surgery.
She is on no daily medications.
She has no medical conditions or illnesses requiring ongoing follow-ups."
Do you see what I mean about disregarding everything? It worries me that the man is still treating children, and more kiddos like KayTar are falling through the cracks. He might be a good doctor, but he isn't a good pediatrician. Josh doesn't get fired up often...but I don't think he's going to let go of this one.
On a lighter note, here is a picture of my BubTar from the land of yesteryear, all chubbly-bubbly and beautiful:
And one more of my very favorite part of the video, the meeting of BubTar and KayTar:
Last week, Josh pulled out the old camcorder (this isn't going where you THINK it's going, you dirty people) and transferred the contents of the tape to the TiVo so we can put it on DVD and he can reuse the tape. The tape was wonderful, it was footage covering BubTar's third Christmas (he was 2 years old) when I was perfectly and plumply pregnant with our dear KayTar, all the way through her birth, up until she was about 8 months old. BubTar was adoarable! He just made me MELT. With his gruff little baby voice and delicious baby fat, I almost cried with joy at seeing my dear baby boy again. He was hilarious...he was obsessed with talking to himself in the viewfinder, we have about 35 shots of the side of his head as he leaned in CLOSE to the viewfinder to talk to the "udder BubTar" (translated to mean "other"). I was shocked I could still understand his garbled BubTar-ese...Josh kept looking at me for translations. It was amazingly cute. Even the way he said KayTar's name was glorious.
KayTar was beautiful, as always, but rewatching this old footage we realized something...all was never quite as it should be with our sweet KayTar. In one video, she spontaneously gagged and threw up (it looked exactly like the shaving cream reaction, it was weird)..the way I reacted made it seem like she did this often. In a segment from when she was about 5-6 months old, she was laying on our bed, not rolling or sitting or crawling, just laying looking at her hands in thay very newborn way. Her cousin was crawling all over her and looking at her and babbling at her, and KayTar just laid still examining her own hands. From the dialogue, I could tell my sister was maybe a little concerned and just joking about it...and I was jokingly defending her...at the time maybe I knew something wasn't quite right, but we just thought she was taking her time, as apposed to our BubTar who was always advanced. It difficult to compare two children, especcially is one is advanced. I think that is why it took us so long to really decide to push for answers with KayTar...for a long time we just thought she was just taking her time, and it seemed "off" to us because BubTar went so fast. Of course, now we realize that wasn't the case. I asked friends from her birth club to post videos of their children at the same ages we had clips of KayTar, just for comparison purposes. The babies were largely sitting up during the period KayTar was still staring at her little hands, and cruising by the time KayTar was very wobbly staying propped in a sitting position for long enough to snap a picture. The videos of last November of the other kids, looks just like KayTar now.
It was a good discovery for us, lately Josh and I have spent quite a bit of time discussing things and one of the topics is whether it has always been this way, or if it happened all of a sudden, now we know...it has always been this way. I think the gap has grown more as time has passed, and it finally became something obvious, something we couldn't overlook anymore. I wonder what might have happened if we discovered all of this earlier, if we had been able to help her earlier what sort of difference it might have made...but I realize that doesn't matter. This is where we are today, and we are doing all we can do for her. There is no reason to look back at what might have been. StupidPedi might have to do some looking back, though...if we ever get a diagnosis, I think Josh is going to force him to do some looking back...the kind of looking back you do when you are being sued for negligence or malpractice. Pediatricians aren't only supposed to keep their patients well; they are supposed to make sure their development (physical and mental) is on track. He let every bit of this slide for over a year, and he also let her fall off the growth chart. He perpetually told us everything was fine....he disregarded all of our concerns. The month after she had her first visit with our new amazingly wonderful pediatrician, he filled out a form that said:
"KayTar has no birth defects/congenital/genetic/metabolic/or developmental abnormalities.
She has no conditions requiring therapies (speech, occupational, physical, or psychological).
She has no conditions requiring a specialist referral or consultation.
She has no conditions requiring a hospital stay, outpatient procedure, or surgery.
She is on no daily medications.
She has no medical conditions or illnesses requiring ongoing follow-ups."
Do you see what I mean about disregarding everything? It worries me that the man is still treating children, and more kiddos like KayTar are falling through the cracks. He might be a good doctor, but he isn't a good pediatrician. Josh doesn't get fired up often...but I don't think he's going to let go of this one.
On a lighter note, here is a picture of my BubTar from the land of yesteryear, all chubbly-bubbly and beautiful:
And one more of my very favorite part of the video, the meeting of BubTar and KayTar:
Tuesday, October 10, 2006
An affair to remember...
I'm having a secret love affair. With KayTar. Our days are filled with appointments and activity, but the nights are ours.
If you knew us, you would know that we are sticklers for bedtime around here. We can give and take maybe 30 minutes around bedtime, but it is a constant in our lives. We round them up and tuck them in, and enjoy blessed adult television time. Last night I was in the bedroom hanging up laundry, and I heard a sweet little voice on the monitor. She had been in bed for an hour and hadn't fussed at all, she was just babbling to herself, or maybe to her blankey, I'm not sure. I couldn't resist. I told Josh I was going to check on her and when I entered her room she popped up and starting giggling and clapping. That sealed the deal. I scooped her up and danced around the room with her. She snuggled and giggled some more. Josh heard us laughing together and came in as well. He hugged her and talked to her, and then he put his t-shirt on her. She loved it. Since she was up already, we decided to bring her back to the living room. She was being totally adorable. So adorable it made bedtime disappear. She stayed up for about an hour with us, just being adorable and letting us bask in the warmth of her smile.
Yesterday was awful. KayTar napped from 4:30-7:45 in the evening after we came home. Once BubTar went to bed, I snuck KayTar out for a late night Walmart run. We needed batteries, so I used it as an excuse to kidnap her and take her out past her bedtime. She was so silly and wonderful while we were out (although I think she was a bit confused about why it was dark). She asked for Cheetos (point, grunt, sign "eat") so I bought them for her. It felt so rebellious! We were out past bedtime AND buying junk food. I even opened them for her in the checkout line. After the day she had, I would have bought her a pony, I think...so the Cheetos were a reasonable request. She nibbled on the sides of the Cheetos, like tiny corn on the cob. She even swallowed some (although much of it was spit out). She signed to me to ask for more. We had a blast.
Our days are filled with testing and therapy, but our nights are filled with swoony baby love, complete with sloppy baby kisses and belly laughs. We aren't throwing bedtime out the window, I'm sure tonight it will be back to normal...but its nice to know we can throw it out once in a while and fill that time with special time just for us. An hour filled with sloppy baby kisses and belly laughs now and again is better than the best therapy. :)
Here are some photos of our secret evenings together:
Wearing Daddy's shirt and sitting in the block tub
Wearing BubTar's hat
This one just cracks me up...what a face!
Could you make that sweetness go to bed? I don't think so.
If you knew us, you would know that we are sticklers for bedtime around here. We can give and take maybe 30 minutes around bedtime, but it is a constant in our lives. We round them up and tuck them in, and enjoy blessed adult television time. Last night I was in the bedroom hanging up laundry, and I heard a sweet little voice on the monitor. She had been in bed for an hour and hadn't fussed at all, she was just babbling to herself, or maybe to her blankey, I'm not sure. I couldn't resist. I told Josh I was going to check on her and when I entered her room she popped up and starting giggling and clapping. That sealed the deal. I scooped her up and danced around the room with her. She snuggled and giggled some more. Josh heard us laughing together and came in as well. He hugged her and talked to her, and then he put his t-shirt on her. She loved it. Since she was up already, we decided to bring her back to the living room. She was being totally adorable. So adorable it made bedtime disappear. She stayed up for about an hour with us, just being adorable and letting us bask in the warmth of her smile.
Yesterday was awful. KayTar napped from 4:30-7:45 in the evening after we came home. Once BubTar went to bed, I snuck KayTar out for a late night Walmart run. We needed batteries, so I used it as an excuse to kidnap her and take her out past her bedtime. She was so silly and wonderful while we were out (although I think she was a bit confused about why it was dark). She asked for Cheetos (point, grunt, sign "eat") so I bought them for her. It felt so rebellious! We were out past bedtime AND buying junk food. I even opened them for her in the checkout line. After the day she had, I would have bought her a pony, I think...so the Cheetos were a reasonable request. She nibbled on the sides of the Cheetos, like tiny corn on the cob. She even swallowed some (although much of it was spit out). She signed to me to ask for more. We had a blast.
Our days are filled with testing and therapy, but our nights are filled with swoony baby love, complete with sloppy baby kisses and belly laughs. We aren't throwing bedtime out the window, I'm sure tonight it will be back to normal...but its nice to know we can throw it out once in a while and fill that time with special time just for us. An hour filled with sloppy baby kisses and belly laughs now and again is better than the best therapy. :)
Here are some photos of our secret evenings together:
Wearing Daddy's shirt and sitting in the block tub
Wearing BubTar's hat
This one just cracks me up...what a face!
Could you make that sweetness go to bed? I don't think so.
Monday, October 09, 2006
Blood work makes me SAD
Today was a big day! We went to the Feeding Disorders Clinic downtown at our usual hot spot, the Children's Hospital. The doctor was amazingly friendly and great with KayTar...she was also quite the talker. I really enjoyed the appointment. She was very informative and even gave me some tips for navigating my insurance and the school system in future years. She gave me some snappy comebacks for therapist who doubt the validity of her issues, because the school system doesn't provide "feeding" therapy. She referred KayTar to a private SLP/OT through the hospital who will do an in-depth evaluation and set up therapy for her. The doctor said our goal is to have her eating normally by Kindergarten. Wow. Even though I know much of this could be long term, I didn't realize it would take so long to get her to eat normally. Kindergarten seems light years away.
On the way home, I suggested to Josh (yes, he came to the appointment, his very first!) that we might want to knock the blood work out today, too, so we stopped at the lab. IT WAS AWFUL. It is always awful. Pulling into the parking lot makes me want to barf. Looking at my sweet smiling baby girl as we walk in the building to her doom, makes me want to barf. Actually waiting in the room for the phlebotomist makes me do a little apprehensive dance. And since Josh was there with me, I did a good bit of repeating "I don't want to do this!" and burying my head in his shoulder. Holding her down while they stick her makes me cry. AWFUL. They stuck her once, and WIGGLED THE NEEDLE AROUND. A LOT. I thought I was going to pass out. I was holding her down while they tortured her. If someone had wiggled that needle in MY arm? They would have left the room with a black eye. But poor KayTar had to take it. So sad. The ladies put the tourniquet on her other arm and started pressing and rubbing, but they gave up before sticking her. They couldn't find a viable vein or get any blood. We have to go to the Children's Hospital on Wednesday to have the pro's take care of it. One bonus? We get instant results. No waiting 2-4 weeks to get answers. But it means I have to hold her down again on Wednesday, and I don't want to do it. At all. Ugh.
On the way home, I suggested to Josh (yes, he came to the appointment, his very first!) that we might want to knock the blood work out today, too, so we stopped at the lab. IT WAS AWFUL. It is always awful. Pulling into the parking lot makes me want to barf. Looking at my sweet smiling baby girl as we walk in the building to her doom, makes me want to barf. Actually waiting in the room for the phlebotomist makes me do a little apprehensive dance. And since Josh was there with me, I did a good bit of repeating "I don't want to do this!" and burying my head in his shoulder. Holding her down while they stick her makes me cry. AWFUL. They stuck her once, and WIGGLED THE NEEDLE AROUND. A LOT. I thought I was going to pass out. I was holding her down while they tortured her. If someone had wiggled that needle in MY arm? They would have left the room with a black eye. But poor KayTar had to take it. So sad. The ladies put the tourniquet on her other arm and started pressing and rubbing, but they gave up before sticking her. They couldn't find a viable vein or get any blood. We have to go to the Children's Hospital on Wednesday to have the pro's take care of it. One bonus? We get instant results. No waiting 2-4 weeks to get answers. But it means I have to hold her down again on Wednesday, and I don't want to do it. At all. Ugh.
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