My Sweet

Oh KayTar, where should I begin? I could begin at the beginning with the moment I saw you, but that seems more fitting for your birthday post in 2 months. I could begin at the first hint of things not being quite right, but nobody really knows when that was. I suppose I'll begin at the beginning of this journey. The day we first knowingly embarked on this journey.

I was so worried about you. You had been ill for almost the entirety of your first year. The pediatrician always brushed it off and said "respiratory virus". I don't think I worked one full week since you were born, you had to stay home sick almost weekly. It seemed the stuff of normal childhood illness, just much more frequent. The latest things we had noticed was your awful constipation. The pediatrician always said "Just give her a glycerin suppository." He didn't understand that you cried and bled each time you went to the restroom. On our own, your dad and I did research on natural ways to help constipation. We changed your diet completely. Anything on the "firm" side of the scale was tossed out and replaced with a "soft" food. We supplemented with flax oil. We added fiber to your diet. We changed everything we could and still it did no good. The doctor wouldn't listen. I knew your weight was low. I knew you weren't eating enough for your age. I still worried about that unexplained episode you had last May. I watched you "play" and knew something wasn't right. The pediatrician smiled at appointment after appointment and said you were fine. "Not to worry, Mom." He saw you almost weekly for your entire life, and he always said things were just fine. I couldn't worry anymore. I couldn't sit by and let you slip through my fingers. I couldn't ignore what I saw any longer. So we made an appointment with a new pediatrician.

I typed up a list of all my concerns. I documented your diet for 2 weeks in anticipation of the appointment. I typed up your milestones and brought a copy with me. I was prepared to fight for you. Prepared to make someone listen. Dr. H came in and looked at you and immediately asked me about each concern on my list, before I even pulled it out of the diaper bag.

"How is her development? I don't usually come into an exam room with a 17 month old and see her happily playing on her back with a rattle. Did your pediatrician have her evaluated?"
"Her weight seems low. According to the chart she is below the 5 percentile for her age group. How much does she eat? Was the pediatrician treating this? She is still on baby food?"
I did have to mention the constipation, but it isn't obvious at first glance. She put you on PediaSure and Miralax, and set up a follow up appointment to determine a course of action regarding the delays and further research the previous episode, she didn't want it ignored.
You had lost 1 set of words at that point. You could not eat anything except stage 2 baby foods. You weren't crawling with your belly off the floor. You rarely sat upright. You didn't play with toys. You could not communicate with us. You didn't seem to understand what we were saying to you. You were so small.

I was looking through pictures today, and I found one from the day of that first appointment. We were filling your prescription at the grocery store and I gave you a chocolate chip cookie. You couldn't eat it of course, but you smeared it all over yourself and I let you play with it a bit in your highchair when we got home. I snapped a picture because you looked like such a big girl, covered in cookie. You looked almost like a child your own age.



Until I looked back at this picture, I didn't realize how skinny you were. I couldn't remember how tiny you were. Looking at this photograph today, I saw exactly how far you had come in these 4 months.
Although you lost 3 different sets of words before they became sticky, you now know over 45 words in sign language, and can name at least 20 objects. You know most of the alphabet. You are beginning to connect words with their initial letter sound. (Bob! B!)You can eat chicken nuggets, cookies, crackers, toast, waffles, french fries, and stage 3 baby foods. You are not only crawling with your belly off the floor, you are cruising and taking steps between people. You can stand on your own for up to 15 seconds. You love to play toys; especially instruments, art supplies, and puzzles. You communicate beautifully. All of your needs and most of your wants are conveyed with a mixture of sign language and spoken sounds or words. We ask you things and you answer with a resounding "Yeah!" or vigorously shake your head "No." and open and close your little finger and thumb to reinforce the sentiment, sometimes you use both hands to sign "No." to us. You have grown so much. You were barely in 12 months clothes 4 months ago at that appointment. Yesterday and today I had to make emergency shopping trips to buy you new clothes....in 24 months and 2T. You have grown into and out of 2 sizes in 4 months. You look healthy. You are beautiful. You have graduated from the PediaSure club at a healthy 24 pounds. You were barely 19 pounds at that intial appointment. You have grown from 31 inches to 34 inches tall.








You are beautiful and bright and healthy. I have just been through the most difficult months of my life, and although they are not over, looking back at where we started and comparing it to where we are today, I can't contain the joy. You are nothing short of a miracle. Some people search their entire lives to see a miracle of God, and we have one sleeping in the next room. My sweet, KayTar, we could not be more thankful to have you.

All my love,
Mommy

My favorite day of the year

I love the day after Christmas. Today especially, because the kids had such a wonderful Christmas. They both have so many new things that I haven't heard any whining and no one has said "I'm so BORING, Mom." like the other 364 days of the year. This year we banned playsets, stuffed animals, action figures, and the like. The result? Things they both love and actually use on a regular basis. Christmas is so frantic and busy; rushing from here to there, trying to see everyone, exchange gifts, eat, and so on. Today we just stay in our jammies and enjoy our new things. We didn't even think about naptime today because both the kids were so well behaved...we looked at the clock and realized it was 2 and promptly put them to bed. It has just been such an easy going day. After nap, we are going to play outside on the trampoline, with the Gigaball and sandbox. Then we might take KayTar for a spin on the trike and let BubTar race his remote control Mater up and down the block for a bit. But while they are sleeping, Josh and I will be enjoying season 6 of CSI which we received from his Grandma yesterday. :)

Happy December 26th, the best day of the year!

Merry Christmas!

We woke up at 5 this morning. Yeah...that said 5. We aren't morning people. Nope, nope, nope. BubTar couldn't sleep any longer so we caved. KayTar slept until 7-ish which is VERY early for her, too. They had a great morning. Santa left a trike and a sandbox for KayTar, and a desk for BubTar with the first clue in a treasure hunt for a second gift. He had a blast following the hints. And it ended with an exclamation of "IT'S A TRAM-FO-WEEN!", otherwise known as a trampoline. We had just finished up opening gifts when KayTar awoke. She saw her trike and that was enough for her. She sat on it and had her brother fetch and open her new gifts, and she inspected them from her tricycle throne. :) She kept signing "Bike!" and smiling so big. We lured her off of the bike to try out her new rocking armchair, which she also loved. From there she checked out her Laugh N Learn Chair and finally we opened the sandbox filled with rice and beans. It was SO messy, but they both had a blast. From now on, the sandbox will be outdoors, not in the living room. ;)I think they both got everything they could have wanted and then a bit more. Of course, the only thing BubTar asked Santa for was "Orange playdoh...you know you can buy it at Walmart, Santa?" so he was easy to please. KayTar is in love with her trike and everything else is just gravy. Even though we woke at an ungodly hour, it was a great morning and everyone enjoyed it.

I hope you all had similarly wonderful mornings and have a day filled with family and fun. Merry Christmas!

Smiling Sunday: Merry Christmas!

Here's a surprise gift we received from our dear KayTar, and I thought I'd share it. It is sideways, but you'll get the idea.

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Yeah, she knows her letters. Who knew? We sure didn't.

Merry Christmas wishes and much love to you all!

Failings

Last Thursday, I sat in line to drop BubTar off at Pre-K for 30 minutes and no one came to help the kids out of the cars. BubTar is having a panic attack in the backseat.
"Momma! We OVERSLEPT. We MISSED school. There IS no school! We're late!! Momma!!!!"
I assured him we were NOT late and we did NOT oversleep, and confirmed this by gesturing to all the cars in line with us. "See all the cars? They wouldn't be here if we were late, BubTar. We're fine. It's okay."
I got tired of waiting and called the school office.
"Hello. My son is in the afternoon Pre-K class, and I'm in the drop off line, but no one is on duty. Am I supposed to walk him to class today?"
"Uhh ma’am today is an early dismissal day."
"So what line am I in?"
"It must be the pick up line."
"Oh my, I'm so sorry to bother you, goodbye."
It turns out BubTar was right after all. Early dismissal days are from 10:30-12:15. Normal days are from 11:45-2:45. We totally missed school. This was especially a problem, because I am a procrastinator. I was sending money for candy grams AND our portion of the teacher's gift that day. I was in sweats and was not going into the office dressed that way, especially after being the idiot who sat in the pick up line for half an hour.
Friday, Josh had a vacation day and he volunteered to take BubTar to school. It was another early dismissal day, which I had written into my calendar as being from 10:00-12:15. So we rushed around to get him ready for school (because we had slept in) and they rushed out the door.

Josh called 15 minutes later:
"Hon, what time did you say school started?"
"10 o'clock."
"Well, his teacher won't let us in. She says it doesn't start until 10:30."
"Oh crap, can I not get ANYTHING right?"
"I'll just hang out on the bench with him until class time, okay?"
"Yeah, that sounds fine. I'm sorry."
"No big deal, talk to you later."

Five minutes later the phone rings:
"Hon, what is the money for?"
"Candy grams and the teacher's gift."
"They won't accept it. It's too late. The deadline was yesterday."
"OMG, what is wrong with me? I'm sorry...AGAIN."
"It's fine...we're still waiting for class to begin."
"Okay...bye."

Five minutes later, the phone rings:
"What time is the party?"
"I wrote down 11:30-12, but you know how reliable I am, so I'd ask if I were you."
"Okay, I'll call you after I talk to the teacher."

At this point, I cry. I am ruining everything. It was the worst week last week, I was emotionally drained and had been preoccupied fighting for KayTar in a way I never should have had to. She had been implicated as the reason a family member had left their job. The school had published this information in a school-wide letter. They made my child seem like a burden, which she most certainly is not, and I had to fight for her. They sent out our private information. It was a long week. I was out of juice.

The phone rings again.
"You were right; the party is at 11:30. Get ready and have KayTar ready and I'll come back home and we'll all go together."
"I'm not going."
"What?"
"I screwed everything up...we didn't even chip in for the gifts. I can't go."
"They accepted the money; the room mom said it was fine. Everything is fine now."
"But I still messed it all up...I can't go."
"I'm coming home now. We are going. It's FINE. I promise."

So I resign myself to go, but feel like a failure the entire time.

*******************************************************

On Monday, KayTar had an episode that lasted for 8 hours. The pain was much shorter lived, only about 2.5 hours, which isn't unheard of. We kept expecting her to come out of it and we opted not to bother the doctor after hours, because there is nothing they can do to help her. We are out of options and tests. The worst was over in any case.

I emailed the pediatrician* about it yesterday and asked if we did the right thing. She replied saying "I don't know if you did the right thing by not calling. Honestly I would be scared myself if I had a child in pain that long." This made me feel awful. It made me feel like I had failed KayTar and wasn't concerned for her well-being. I don't think she intended it that way. I think it was more about letting me know that even she would be afraid at that point and therefore did not mind my calls. But after the previous week, it just felt like one more mark in the "Losses" column of my life. It felt like "Why aren't you more concerned about your child?"

It IS terrifying. But we have been told they are out of tests that need to be run. We have been told that there is nothing to help an episode once it begins only preventative measures and if they fail, there is nothing else to do but wait. So we waited. I held her on my chest as she writhed and cried. I cradled her and made "Shhh." sounds just like I did when she was a baby. I did everything I could to help her through. If these are going to be a part of our daily lives (or bi-weekly lives) then at some point we have to come to terms with them. I feel badly about calling the pediatrician when I know she cannot help. It seems a pointless disruption of someone else's life. We didn't not call because we are careless, we didn't call because we didn't think it could make a difference. The pain was not long considering our history, but the episode itself was very long. If the pain had continued longer than it had, I would have called regardless, but she was no longer in pain.

We exchanged emails, and every email after that I felt like I was losing more ground. She asked why I didn't cancel the appointment with Dr.Old Neuro. I did cancel it, through the hospital's automated system, but they have me listed as a no-show. She asked if I had a visit scheduled with Dr. New Neuro, because he needs to see KayTar ASAP, and I hadn't. He told me he didn't need to see her for a f/u until after the March MRI. I called to schedule one yesterday and the earliest appointment is July 6th. Not exactly ASAP. I emailed her and told her and the neurologist is going to try and bump us up much sooner than that.

The whole thing just seemed to confirm I am failing a lot more than I am succeeding at the moment. But the things I am failing at seem out of my control. I didn't KNOW Thursday was early dismissal. I didn't KNOW school started at 10:30 on Friday. I should have, but I didn't. That in itself is a failing. I didn't KNOW I should have called on Monday. I didn't KNOW that is what she wanted. I didn't KNOW that the hospital listed me as a no-show to an appointment I had canceled. I didn't KNOW I needed to see the neurologist before March. I didn't KNOW it would take 8 months to get an appointment with him. He didn't have me set up a f/u visit the last time I saw him. I feel like everything is slipping through my fingers before I even know there is anything in my hands at all. How do you catch something if you don't know it is falling?




*I love our pediatrician, and she has been NOTHING but wonderful and helpful to us. Rationally, I don't believe she was scolding me for anything. She was just reinforcing her total availability to us, not questioning my concern for KayTar. It was my predisposition to the sentiment that caused me to view it this way. She has been our savior at every turn.

Not all surprises are GOOD

I promised to post, and post I shall. My dear KayTar is having an episode, as I type. Don't worry, I haven't abandoned her in her moment of need...the worst is over. She was in pain from about 12:45-3:15, but she keeps collapsing so we have put her safely in her crib where it is nicely padded.

My parents live about five minutes from our home. In the time it took me to drive from their house to ours, she was suddenly full throttling her way into an episode. She was fine when we left their house. She cried and writhed while laying on my chest for the duration of the pain. Around 3, she opened her eyes (without them rolling back into her head) and attempted to sit up. The first time she sat up, I thought she was out of it, but she soon collapsed and began to cry again. At about 3:15, the crying stopped and she climbed off of me and the couch onto the floor. Then I was sure it was over, and then she collapsed. And so on and so forth until I realized the best place for her is the crib, because while she is lucid, she is also continually collapsing and would hurt herself any place else. Thankfully, she is no longer in pain, and her awareness level is almost at baseline. We've passed the 5 hour mark at this point, which makes it our longest episode to date.

Josh came home to report he has had a nagging headache all day. This is significant because I think he has had a nagging headache every time KayTar has had an episode. We are totally unsure about the reason for the correlation, because most days are like today and Josh is at work and KayTar is at home when they happen. Is it weather related? Allergen related? Is it time related? KayTar is still clipping along at 2 week intervals, which means Josh also gets a headache every 2 weeks. He also experiences true migraines, but those don't coincide with KayTar's episodes. I am so intrigued to get the results from KayTar's Hemiplegic Familial Migraine evaluation. Out of the many tests that have come back negative, I almost expect this one to be positive, because of the correlation between Josh and KayTar's conditions. It seems too related to be a coincidence, but we'll see.

This isn't the post I intended to write today. I intended to write about the awful school parent I was last week for BubTar. Or about the fact that the bathroom was repainted this weekend, because while Josh was using it he decided that the paint situation was an emergency that necessitated an immediate solution. Or about the horror that was babysitting my sister's children this morning. This post could have been about many things, but I didn't think it would be about an episode. The episode came as a surprise, as it always does; and when it comes, it wipes the rest of the world away. It is just us and our sweet KayTar, and nothing in the world mattters more than helping her through it all.

Edited to add:
Spoke too soon. She asked for dinner, I obliged, she vomited. She is crying on and off again. I think perhaps the Motrin I gave her early on controlled the pain element, but has since worn off. We have to wait for her tummy to settle again and I can give her another dose. Right now she is in the darkness of her room watching Blue's Clues from the crib, it seems to be appeasing her for the time being. Poor sweet girl.

Edited again to add:
Grand total: 8 hours.

Smiling Sunday

Sorry the actual posting has been lacking as of late, life has been hectic and I can't seem to think straight. I promise to make an actual post on Monday. :)

Since Sunday is the official start of the week, I thought I'd like to start this week out with a smile and share it with all of you.

Here was our big smiling moment from last week:

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See you all tomorrow, I promise I'll actually have something to say. ;)

Look Who's Walk(er)ing now!

That's right! The KayTar is!

We finally got her walker today!

At first she just wanted to sit in it **

So exciting! :)

My kiddo is adorable

In a distraction from the rage that I am currently consumed by, I present to you, KayTar the GreaT(ar).
She signs B, L, D, and E. She says B (which is incredibly hilarious for some reason) and D, even though it sounds more like "DAY!".

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And since you asked, why YES she was eating chicken nuggets for dinner. And she has been eating stage 3's for a week without a single gag, AND she is feeding herself cinnamon toast waffles for breakfast each day. Amazing!

PIG!

Yesterday was our developmental psychologist appointment. It was awful. It was awful in ways I couldn't even imagine. Wow.

The night before, Josh took a Benadryl and an Excedrin migraine to ward off allergy problems that were starting to give him a headache (he suffers from migraines). This combination gave him a buzz and the munchies, so being the wonderful wife I am, I stayed up with him and watched TV until he got sleepy around 2am.

I had to wake up at 6:30am to get to the appointment on time, so I was quite sleepy. Lack of sleep is my kryptonite, so I was already losing the battle upon waking. KayTar had to wake up at 7:15, and she normally wakes up between 9:30 and 10am, so she wasn't quite herself either. We were out of milk here, so I took an empty bottle with me, planning on buying milk from the hospital cafeteria to fill her bottle when we arrived. Well, the traffic was AWFUL. It was miserably foggy, and it was also Monday morning rush hour. We were supposed to arrive between 8 and 8:15, but we arrived at 8:37, so there was no time to grab milk in the cafeteria. We got in the evaluation room and KayTar was instantly cranky. She was crying and whining for no reason. She is so easy going and she never fusses, unless it is bedtime or she needs to be alone in her crib for a while. This was HARDCORE fussing. When she was an infant, we couldn't go anywhere with her, because she would cry the entire time; I had forgotten about that until yesterday and she was suddenly that infant again. Even her blankey, which is her "defense mechanism" couldn't help. She refused to do things she normally enjoys. The only times she was quiet was when she was working a puzzle, stacking the blocks (which wasn't what she was supposed to be doing with them), and when she crawled away from us, into the corner, turned her back to us and talked to herself. When she came back, she was instantly fussy again.

She does so well for her ECI evaluations, she always exceeds what I think she is capable of, but those are done here at her home in her territory. They are relaxed and kind. The therapists make an effort to get to know her before asking anything of her. This was not that sort of experience. When we arrived in the room, the psychologist immediately started pulling out toys and "drilling" her. First she handed her a pretty bracelet, then took it away (making KayTar cry) and hid it under a washcloth. Of course, KayTar found it, but as soon as she did, the psychologist took it away from her again. Then, a ring on a strong was dangled in front of her to see if she would grab it and "reel it in". Then it was immediately put away. Then she was given blocks, asked to put them in a cup. KayTar made an impressive stack of ten 1-inch cubed without toppling it, but she refused to put them in a cup. Then she was handed cups, spoons, and a baby doll. She stacked the cups and put the spoons inside the cups. She held the baby for a moment before unstacking/restacking the cups. Then they were taken away. She did a puzzle, it was immediately put away. The psychologist attempted to read a story to KayTar. KayTar was enraged that she could not turn the pages at her leisure. Right after this, she pulled out another book and asked KayTar to point to the dog. KayTar was enraged that 1. the other book was gone, and 2. she was not allowed to flip through this book on her own BEFORE being asked to identify things. She loves to point to pictures in her books, but she wouldn't do it yesterday. She just cried and cried. It went on and on like this. The toys were brought out, commands were given, they were or were not followed, and the toys were put away. Every time the blocks emerged, she calmed down and stacked them; but those were never the instructions. The first block round, she was supposed to put them in a cup; the second round she was supposed to copy the psychologist and build a "choo-choo" with them; the final time she was supposed to put them into a box. She stacked them. She was upset every time they were taken away. She exceled at the puzzles, as always. She was upset every time they were taken away. She wouldn't play ball with me in the hallway, although she was happy to be out of the exam room. She put the pennies in the bank like a champ, she LOVES this and does it frequently with her Aunt. She was upset that once she filled the bank, the psychologist wouldn't pour them out again.

While I was there, I wondered "Why is she being so awful? Is she really this sleepy?" and the psychologist kept asking "Is she always this fussy?" But in retrospect, this was exactly the kind of environment that upsets her. She loves to be in control. She loves to take her time, and do things over and over. Her therapy sessions go so well, because she is allowed to spend as much or as little time on a skill, and she can switch from one task to another as she wishes. She dislikes new people, unless the attempt to connect and let her forge the connections. She is social and loving, as long as you let her "make the first move". She didn't know this lady. She only knew that she gave her toys, made demands, and took the toys away. That isn't the sort of behavior that fosters trust and cooperation. So in retrospect, I think maybe she was more herself than I orginally thought, because it is possible that the environment brought out the "worst" in her so to speak. It was not an agreeable arrangement for her temperment.

After this wonderful session, I had to sit in the room with KayTar while I filled out a 6 page questionnaire about her. She fussed and refused to play. I finally put her in her stroller next to me with a biter biscuit and bought myself a bit of quiet. She started saying "Ga!" over and over, which is how she says "pig". She LOVES the word pig and it gives her the giggles every time. So while filling out the questionnaire, so had to turn every 30 seconds and exclaim "PIG!" much to her delight. PIG! Is what got us through. The psychologist did make a positive comment about this, "I see she is using language to get your attention, very good." I was very distracted, so I hope I answered the questionnaire accurately.

Josh and I are worried that based on her behavior yesterday, the psychologist is likely to come back and say autism, when we STRONGLY disagree. I have researched my little rear end off, and autism has never been a fit for her. Even if she shares sone tendencies, her overall behavior says otherwise. She is loving and friendly and quick to make friends, as long as people respect her boundaries and allow her to initiate contact. She is comfortable enough with her therapist that by the end of the first session, she usually ends up in their laps cuddling. There are other reasons we feel it isn't a fit, but the social aspect is a large one. Autism is not a bad thing, definitely not the worst we've been faced with throughout this ordeal, but we do not want her wrongly labeled because of a bad day. We are afraid the psychologist might latch on to the obvious tendencies and not go any deeper.

Also, if your child has been through one of these developmental psychological work-ups, please let me know if you had a similar experience....or if your experience was different than ours. I wonder if they are structured this way to bring out the "worst" in a child? I'm very confused about the whole thing. Are they meant to be frustrating? We were there from 8:40-11:15, which is a long time for a small tot, especially at that pace. I'd appreciate insight on this one, I find I'm a bit lacking because it is a first for us. She has always been a shiny, wonderful version of herself at her evaluations, always exceeding expectations I had. This time was just so strikingly different, I'm not sure what to make of it all.

The kindness of (not-so) strangers...

On Friday, I attended the staff Christmas party of the school I "work" at. Basically I come in one night every week or two and take care of some registrar related work....mostly I work from home, though. I saw a parent I haven't seen in a while, who works in radiology. I asked him if he worked with our Children's Hospital and we just started talking. He asked me for everything we knew about KayTar so far, which I explained in full, without crying. (Yay me!) To be totally honest, I did kind of start to tear up. When I verbally list it all like that, it feels so overwhelming, like me speaking it aloud makes it more real. He said since he "walks among the doctors" he can get a feel what the different doctors are like. He said he's going to read up on her conditions and talk to with different neurologists as he gets a chance too, and let me know what he finds out. He said he feels like KayTar is his own and he'll do everything he can to help us out. Then he said, "You know, we pray for her every day when we get in the car to come home from school." And THEN I cried.

People say "We're praying for you." all the time. Our pastor says it is the all-purpose Christian hello and goodbye. "Hey! We're praying for you!" or "Well, we'll see you next Sunday...we're praying for you." but rarely does it mean anything. Its just something people say. For that reason, I rarely say it. But when he said "We pray for her every day when we get in the car to come home from school." I knew he was telling the truth. It was so shocking that someone who I never even see anymore prays for my KayTar every day. Thankfully, it was the end of our conversation, so I was able to walk away, have a sip of water and choke down my tears before seeing anyone else. It was just so kind I almost couldn't bear it. Even now, writing about it, my eyes still fill with tears. I think praying for someone is the purest kind of love, and to think someone loves my KayTar in that way without even really knowing her is just amazingly overwhelming.

Hairism: The Unspoken Prejudice

My son is a hairist. Yesterday, at pick up time, as all the children we're waiting outside for their parents, my son jumped another child. Why? You ask. Because "He did not have spiky hair." That is a direct quote. We have somehow raised a hairist. When his teacher put him in the car she said, "We had a hard day today, Mom. He had some trouble at play time, and he just jumped a child out here at pick-up...we had to pull him off of the other boy. He said it was 'Because his hair was not spiky.'" And then she gave me a questioning look. Maybe she was thinking, "What in the world are you teaching your child? This is a Christian school, we do not judge each other based on hairstyle. I don't know what you teach him at home, but we do not allow hairism here!"

Sigh.

I spoke with him about it on the way home, at first he made it sound like the child was mean to him, so I said "Was he being mean to you?" BubTar said "No." and lowered his head in the back seat. So I asked "Why did you jump him, BubTar?" He answered, very passionately, "Because! His hair WAS. NOT. SPIKY. He said he was Sharkboy, but his hair was not spiky and there can only be TWO Sharkboys. And HIS!HAIR!WAS!NOT!SPIKY!" So it was largely about the hair. When the teacher told me that was the reason, I was a bit skeptical...but it turns out she was right. I think it had more to do with the fact that BubTar didn't feel like sharing his Superhero identity of the day with another boy, especially one who didn't even have the proper hair for such an identity. At least he pays attention to details.

Sigh. We are having such a time with BubTar in school. I feel like he is continually misbehaving. It is something on an almost daily basis. We follow through at home. If he is in trouble at school, we don't disregard it at home, there are always consequences. BubTar is just BubTar. He is a performer. He is passionate. He is emotional. He is silly. He is busy. He lacks self-control. But he is also very intelligent. Every time I talk to his teacher, his behavior is lacking in some way, but his academics are wonderful. I don't know if his behavior is normal for his age level, or if HE is the problem child in the classroom. I hope that is not the case, but I can't be sure. We discuss appropriate school behavior. We reinforce the rules. We carry out punishments based on his school behavior as well as his home behavior. I feel that we are doing all that we should be to teach him the proper way to behave, but it only goes so far. In the end it comes down to his choices, and he is a 4 year old boy, and he does make the wrong choice quite often. I don't want him to make classroom life difficult on his teacher, but at the same time, he is only 4 and is bound to get into trouble, even if we are teaching him properly. Even though I understand this, I still hate that he is in trouble so much at school. I worry he is the problem child and we are the problem parents. I worry we should be doing something more to correct things.

I don't want my child to be the one who beats children up for not wearing the appropriate hairstyle for their superhero of choice. "Superman? You think you're Superman?!? You have no curl on your forehead!! *jumps on child and starts swinging wildly*

Oh no, that just won't do.

Overheard in the Kitchen

As Josh and I hugged in the kitchen a few nights ago, this was the dialogue:
Josh: I need a vibrator.
Kyla: (insert shocked face) WHAT?!?
Josh: I said, I need a vibrator.
Kyla: (lets go of Josh) YOU need a VIBRATOR?
Josh: Yah, that's what I said. (looking confused)
Kyla: A VIBRATOR? WHAT? (looking VERY confused)
Josh: Oh, OH! No, not THAT kind of vibrator. I need something that vibrates to try and get something loose from the refrigerator coils.

The man has a way with words.

Later...long enough for us both to forget the conversation...

Josh: I used your toothbrush as a vibrator.
Kyla: What the he-
Josh: No! For the coils!

Sigh. And also *chuckle, chuckle*.

Accomplishments

KayTar is currently saying the following words:
Ma
Tree
Outside
Fish
Key (blankey)
Ish (fish)
Ple (apple)
Go
Yah
Shhh (shoe)
Dog
Ball
K (bike)
Coo (cookie)

KayTar is signing the following words:
Friend
Train
Doll
Bike
My turn
Socks
Yes
No
Dirty
Clean
Bath
Go
Wait
Thank You
Apple
Cookie
Banana
Cheese
Candy
Help
Full
Cold
Star
Sad
Cry
Boy
Girl
Mama
More
Eat/Food
Happy
Bike
Shoes
Banana

She graduated from the PediaSure club yesterday. She weighs 24 lbs 12 oz and is just perfect for both height and weight. If her weight dips, we have to restart it, but for now she is doing GREAT growth-wise.

She ate an ENTIRE stage 3 jar for dinner last night. It took FOREVER, and we had to add a little milk to thin it out, but she ate it. No gagging!!!!

And let us not forget that she is adorable, and that in itself is an accomplishment. :)

Our No-Snowman

My poor children and their snow deprivation. BubTar created his own kind of snowman yesterday, since we are not blessed with snow here.

Happiness is a cold front

It has been a WONDERFUL day! I'm all floaty and light.

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!

Clarification

I emailed my pediatrician yesterday because reults and questions and possiblilites were all getting so muddled in my mind. We were working at such a fervent pace for a while and I think I stop retaining information. The news is good. We have ruled out a malformation of the brain, metabolic disease, leukodystrophies, and vascular malformations. They know it is not cancer. She said that their theory is that the developmental delays stem from a previous injury, possibly in utero, that are not related to the BPTI. Unfortunately only time will tell for sure how delayed she will be and if she will be able to fully catch up. She said we don't know if the delays are going to be progressive, that we'll find that out on the follow up ultrasound if there are changes to the lesions. She told me that we are just going to have to wait and see if KayTar will ever catch up to her peers. But the hope that she might is wonderful. I thought we had lost that hope altogether. If she never catches up, we are okay with that, we've accepted that already. But if she does? And it can make her life easier for her? That will be wonderful.

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.

Please excuse Kyla from blogging...

I'm sick, sick, sick. It started Sunday night, I woke up with a fever and body aches...that continued through Monday. My fever broke on Monday night. Tuesday I woke up with compacted sinuses. Wednesday it traveled to my lungs and by the evening I had also lost my voice. That night, I couldn't sleep, because everytime I dozed off, my throat (or lungs?) would close and I would wake up wheezing and gasping. It felt like someone was smothering me. Thursday, I barely made it to my parent's house for lunch. I managed to down a few bites of potatoes once my Vicodin kicked in. We came home, and I finally fell asleep. My fever spiked and I couldn't get out of bed to go to the in-laws for dinner. I slept from 2-9, laid on the couch for a few hours and went back to bed. Today I feel a bit better...less coughing, no fever, and I can swallow a little, but now I'm having a bit of an intestinal issue. Yay.

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.

Results

We received more test results yesterday. Sigh. Dr. OldNeuro called out of the blue to say that the erythrocyte protoporphyrin that he ran a month ago came back high. He said that the top of the normal range is 70 and her levels were at 107. This either means she has lead poisoning, or extremely low iron levels. He also said her lactate levels were slightly elevated. He wants us to go in Monday for more specific tests, and a test to rule out Rett Syndrome.

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.

Holland

Josh and I married young. Very young. Its a story I'll tell you some time, I promise. Back in those days, I never pictured our life the way it is currently. I knew we'd have babies, but I never knew we'd have a KayTar. I didn't know that the birth of our second child would totally change every aspect of our lives. I wasn't naive, I just didn't know what the future held for us. It has all been very "Welcome To Holland". If you aren't familiar with that piece, here it is:

Welcome To Holland
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."

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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.

Spoiled? Nah...

Saturday morning.
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.

Why I didn't blog yesterday...

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

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

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

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





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

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PS: Is the Blogger Beta worth the switch?

Pride!

OMG! SHE! ATE! THREE! NUGGETS!

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

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

MY BABY ATE!! REAL FOOD!!

*beaming with pride*

I almost danced right there in the restaurant!

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

YAY KAYTAR!

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

Make an online slide show at onetruemedia.com

What a REBEL!

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

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

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

See for yourself.



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



What a rogue dental hygenist we have on our hands.



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

Sigh

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

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

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

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

An answer?!?

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

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

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

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

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

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

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

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

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

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

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

No hospitalization! Yay!!!

Five Hours

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

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

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

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

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

Reunited and it feels so good

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

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

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

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

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

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

Kiss and Break Up

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

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

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

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

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

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

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

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

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

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

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

This is where 13 picks up.

PS: Don't hate him too much.

We interrupt your regularly scheduled program

For this very ADORABLE photograph!



That is all. :)

Or Maybe More ;)

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

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


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

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

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

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


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


has to do with anything.

Friend Seeking Friend

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

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

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

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



***********************************************************


TO BE CONTINUED!

*evil laughter*


His avatar.

13

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

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

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

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




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

November

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

**********************************************************

November.

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

90 days filled with:

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


The next 90 days are equally promising:

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

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

1 ANSWER

The fear creeps in

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

Help me!

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

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

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

What should I pack and bring with us?

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

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

Is there anything I need to know?

Thanks in advance!

The Sweetest Thing

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

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

Make photo slide shows at onetruemedia.com

Why I love this vacation

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

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

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

We eat out for every meal.

People will deliver said-food to our room.

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

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

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

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

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

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

We went to Disney World!!

It is GLORIOUS!

Split Personalities

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

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

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

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

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

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

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

Panic in the Garage

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

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

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

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