circles within circles

I had intended to do and Now and Then type photo for Wordless Wednesday, because sweet KayTar is wearing the same cold weather clothes she was wearing last year, but when I went through my October 2006 photo file, I noticed there were none for this week. Then I remembered, this was the week we went to Orlando, the photos are on the laptop we took with us. This was the week we waited for KayTar's MRI results. This was the week we got KayTar's MRI results. This was the week that fear consumed me. And because life tends to come full circle in these poetic ways, this year we are also spending this week waiting on some very important test results.

We had the MRI on Friday the 20th and left to go out of town on Sunday the 22nd. In the parking garage at the airport, KayTar started having an episode. I still can't reread these posts without my stomach dropping out and my limbs turning to jello. It has been a year and I can still feel that frozen terror.

****

I stopped writing right here to go take KayTar to therapy. When we got outside, she was clearly bothered by the sunlight, but she also went a little limp on me. I loaded her in and off we drove. I kept an eye on her in the rearview mirror and by the time I hit the first stoplight I was calling Josh for a second opinion. "She seems a little off, should we cancel therapy? Nothing is happening, it is just a feeling." and he said, "Go home." As soon as I turned around, it started. The moaning, the "eyes hurt", the retching.

When we got home she didn't want to be put down, so while holding her, I sat at my desk to locate the therapist's phone number so I could cancel, and the ped's pager number to find out if we should try for an EEG. Now, I'm stuck here in my computer chair, covered in a few coats of vomit, typing one handed in the dark. Every time I move, even to shift positions, she starts vomiting again. So here I'll stay until she feels better or my bladder hits critical mass. I am fairly certain it will be the latter that comes first. I had quite a bit of coffee this morning. But vomit covered or no, I'll sit still for as long as I can manage to provide some modicum of comfort while she endures this. It is the least I can do for my poor sweet girl.

Poetic circles of life, no? I think those posts from last year still make my stomach drop and my limbs turn to jello is because I still experience those feelings every time this happens to her. You never really get used to your child being in such unbearable and unnecessary pain. It is completely at odds with the visceral maternal drive to protect your young at all costs. How do you protect them when the predator is their very own body?

I can't help but wonder what might have happened today if I had begun a wholly unrelated post this morning or had just chosen to post a WW photo like I had intended. Would we still be snuggled painfully together in the desk chair or would our day look something more like this?




It has been one month and one day since her last, it looks as though that 69 day break was a fluke after all. Oh, how I wish it wasn't.

In which KayTar relates her first experience

Last night KayTar was up late due to sleeping off the sedation all day long. She, Josh, and I were laying in our bed. She was thrashing around and giggling, sticking her toes up to our faces while exclaiming, "Poo-wee! Tinky peet!", snuggling up beside me and saying, "Oh MomMom. Oh KayTar." Suddenly she stopped playing and looked up at the ceiling.

"Go a-docdah a-day. Bye Town. Bye Docdahs. See you a-morrow."

"No baby, we don't have to go back tomorrow."

"See you ext eek!"

"Yeah sweetie, we'll see them next week."

Then she started talking in a very quiet serious voice, it was mostly unintelligible gook, but then I heard "Da IV. (pointing to her hand booboo) Hab da IV. Bye nurse!"

Sigh.

I don't know if it counts as relating as an experience. I told her several times yesterday that we were "going to the doctor today". And she always continues to say "Bye docdahs! Bye Town!" for hours, sometimes days after her appointments. I think saying the words help calm her when she starts thinking about it, like saying "Bye!" to the doctors will keep them at bay. However, we weren't discussing the doctor or our day when she stopped to tell us "Go a-docdah a-day." It was really a spontaneous statement, a window into her day and her mind. While we we laughing and playing, internally she was still dwelling on the day's events, and she was able to let us know.

It was really exciting, hearing her share her thoughts for the first time, but it was crushing at the same time. How I wish she could have crossed this milestone in a way that didn't reinforce how doctored her life is, that her first related experience might have been, "See cat a-day." or "Go playground a-day." or "Go wimming a-day." I wish her thought life wasn't full of reenactments of her somewhat frightening day, that she didn't have to will the doctors away by repeating "Bye docdahs!" the nights and days after our appointments. I wish she didn't have the freeways and exits on the way to our pediatrician and hospital memorized. I wish she didn't visit enough to recognize our pediatrician's office building from the street and call out, "Bye Docdah (Ped's Name)!" as we pass it. But she does and part of me knows it is a positive thing. She understands enough to know what is happening, to know that even when things are a little scary, eventually we go home and everything is okay. She knows how to calm herself. She knows how to peptalk herself through procedures. She used to be completely terrified of all doctors and nurses, she would scream through entire visits, hysterical, inconsolable, but now she knows that doctors aren't all bad. She has a good enough time in run of the mill appointments, talking to and playing with the doctors. I know that her mental rehearsal of the appointments, the power she feels in the word, "Bye.", her awareness of where we are and where we are going, all work together to help her feel some control over the situation. I know that is a good thing. I just wish she didn't have need of it all.

She's been playing next to me while I write. She just looked up and said, "MomMom. Hab IV. (pointing to her hand again) Bye docdahs. See you a-morrow. See you ext eek."

That girl. She makes and breaks my heart.

My supergirl in repose.

It was nothing like last time

So much for being prepared, eh?

This morning I had the hardest time finding the motivation to get ready. I was experiencing a sudden onset of adult ADD, and I just could not focus on the tasks at hand. I knew why, I didn't want to go. I knew it wasn't going to be a laid back, talk to the doctor, relaxing-type appointment. It would be sad and painful, so my feet felt glued to the floor. Luckily my conscious self knew what my unconscious self was trying to pull and well, evidently, doesn't take that crap.

We arrived at about 9, stopped by the coffee shop to grab a donut (go health food!) and went to the imaging department to wait. We didn't get called back until after 10, so thankfully KayTar was in a splendid mood despite having to fast this morning. Sometimes the fact that she hates food does work to our advantage, but more often than not, that isn't the case. Like when the nurse took her weight and said, "You know she hasn't grown since we saw her in July." and I replied, "Yeah, well, we're working on it." So we spent a little more than an hour admiring the fish, "Tiny baby fish! Blue one! Yellow one! Brothers? Oh, bueful family. So cute!" and reading a parenting magazine together before finally being called back. KayTar's an old enough hand at this that she can sort of sense what is happening, even if she doesn't quite know the exact procedures are. If we go in the room filled with scrub-clad people, she senses danger. She hugs a little tighter to my body, she speaks a little softer, her standard reply becomes "No!". She doesn't cry until I let her go and put her on the table, though, and even then she is such a good girl. She told herself, "You okay, KayTar. You okay." and "Do (doing) a great job." Because those are the things I say to her. The doctor explained the risks, as always, and had me sign release forms. The nurse explained the medications has he administered them, "This one burns a little and causes some agitation." "This one causes hypersensitivity to sound and touch, so you can stand by her, but don't touch or speak to her once we give it." "Some kids sleep with their eyes open and it freaks their parents out." And then I was asked to kiss her and leave. So I did. I didn't want to, I didn't need to, but they do the procedures differently as an outpatient versus and inpatient, so I followed protocol.

I was left to wait for what should have been roughly 45 minutes, but I went through three episodes of Scrubs on my iPod before being called back to recovery. This wasn't the first time I've had to wait for her to come out of sedation, we've had MRIs and CTs before, but it was the first time I was waiting alone. It feels different. There was another mother waiting in the room, all she had was a fresh diaper and a newborn sized sweater. She kept holding it up to her face and breathing it in. Her eyes were heavy with worry and sadness. I remember feeling that way during my first wait. Today didn't feel that way to me, I just longed to be with her. I knew she'd come through just fine. She always does. Outpatient LPs are done under total sedation, rather than the conscious sedation used upstairs. She was dosed with a sleeping medication, a pain medication, and a sedative. They also use an x-ray machine to guide the needle in, rather than the old fashioned method they employed on the neurology floor. Truth be told, it made me just an eensy bit more nervous. I'd like to know the doctors are good enough at this that they don't need the aid of the x-ray machine, although I know it is just a precautionary measure to add an extra level of safety to the procedure.

Once I was called to recovery, the nurse said she had received so much medication, she needed to sleep for an extra hour, so I sat by her bedside watching additional episodes of Scrubs. There's something about watching a show about a hospital while you are in a hospital. It's immersing. Usually once we start to wake her, she pops right up like she was never down, but that wasn't the case today. She was so sleepy we could barely rouse her. She finally woke enough to take her bottle once we started taking off the monitors and removing the IV. And then we headed home. She was so out of it, poor baby girl. She is actually asleep again, as I type. She never does this after sedation, so I know they dosed her pretty heavily. But it is done and I hope she doesn't have to do this again for a very, very long time, if ever. And in a few days, we might have some answers. The thought fills my stomach with butterflies every time.

When I left the house this morning, it was in the upper 80's at the very least. KayTar was wearing a skirt and sleeveless shirt. When I got home, the weather was a crisp 49 degrees and there was a package in my mailbox. A friend had sent me a package with yummy maple creme and a sweatshirt to remind me where I really belong, complete with the weather fit for wearing it. Who knew Mad had the power to control the weather?

I just have one question, does it come with free healthcare?

Now with actual content!

I've been a photographic mood lately, so forgive the lack of written word. Seeing as though we are on the cusp of KayTar's big test, I felt it would be proper is I had a post with, you know, words and such.

Last night I had the BEST night out with a few amazing bloggy friends. (Yes Flavia, I put you on BLOGGY on purpose, perhaps as motivation to do so.) We had good conversation, good laughs, good food, good alcohol, and good dessert...it was a perfect evening. I left the house about 6:30 and didn't roll into my driveway until after 1am. It was a beautiful thing.

Julie, Me, Jenny, Flavia. I'm pretty sure she has a real name, but we pretend like she doesn't. ;)

Tomorrow, well, tomorrow is Test Day. El dia de LP. Spinal Tap the Sequel. Lizzle to the Pizzle Dizzle. Tomorrow morning we go to the hospital for another needle in the sweet girl's spine. Sigh. The first time we went through this, I was on the verge of tears all morning. I was sincerely hoping the doctors would treat it as business as usual, thus proving my fears to be irrational, but instead a counselor came in to make sure I knew what was going to happen, ask if I had questions, tell me I could stand outside if I was uncomfortable watching (who cares if I was uncomfortable? I wasn't the one with the needle going into my spine! The least I could do was stand by her). The counselor even offered to come in the room with us while the procedure was being done. I sat there willing her to stop talking, because I needed only the facts. I needed to know this was done all the time and it was absolutely nothing to worry about. I needed to know it was so commonplace that no one would even think I was concerned about it. That wasn't the case and I spent the whole morning leading up to it swallowing back my tears. KayTar slept in that morning and I remember sitting next to her on the bed, stroking her little leg and saying "I'm sorry, sweetie. I'm so so sorry." In the end, it went well. The sedation definitely did the trick and while she was not unconscious, she wasn't exactly lucid. She groaned loudly when they put the needle in (it does take some force to get it in there, unfortunately), but otherwise she handled it well. Once she regained full consciousness, she even said, "Bye doctor! Thanks!" which filled my throat with tears all over again.

All in all, it went as easily as could be expecting and I think that having labs drawn is more traumatic for her. With that knowledge I can look to tomorrow and feel much less apprehension than I did the previous time. The first round of testing is always the worst. It was that way for labs, IVs, sedations, MRIs, CTs, ABRs, and of course, LPs. You never know what to expect or how your child will handle it and the fear of the unknown is almost too much to bear. Once you've been through it, the second time seems much less daunting. That said, I'm not exactly looking forward to tomorrow. I hate that she has to go through something scary and uncomfortable. It never feels right to stand by while someone puts a needle into your baby, even if you know it is necessary. It hurts your heart as much as it hurts your child's body. But this might be it. Tomorrow they will have their second sample of CSF. It will be shipped to Dr. FancyPants DRD-Expert for the testing and we should have results in roughly two days. By the end of next week, we could know. We could have an answer. So today, I sit here filled with equal parts of sadness and hope. Sadness that she has to go through this test again, but hope for what it might mean for our sweet KayTar.


Yes, yesterday was a beautiful sunny day and we were able to enjoy it. It was a gift.

October in Texas

Even the trees are confused.

A photo for Friday

I'm all out of words, and so today I give you this:



And this, too.



Happy Friday!

August 11, 2006

Josh woke up and went to work like any other day. KayTar and I had to wake earlier than usual, because BubTar had spent the night at his grandmother's house and we had to pick him up. I loaded her into the car, sleepy-eyed and pajama clad to meet my mother-in-law at her place of employment for the BubTar hand off. She seemed fine. Sleepy, of course, but fine. We went in the school building, gathered BubTar and his things and headed off for home.

Once we got home, I plopped her on the living room floor and went to make BubTar breakfast. When I came back in the living room, she was behaving strangely. She couldn't seem to pick her head up off the floor. Her eyes were closed, but she was clearly awake. She wouldn't respond to me. I picked her up and she was a dead weight. She tried to open her eyes, but they just rolled back. Her head was stuck in a sideways position. She didn't look right. She started vomiting. I called our new pediatrician and said, "I think she might be having a seizure, but I'm not sure." She said to come in. I called my mom and she came over to ride in the backseat with KayTar. We dropped BubTar at work with Josh. By the time we got to the pediatrician's she was sleeping heavily.

As I was signing in, the receptionist said, "We have a room waiting, you can go right back." The pediatrician came in immediately and looked her over and sent us to the hospital. The exam sheet from that day said, "Developmental delay, dysmorphic features, new onset seizures. To Children's Hospital." Off we went. The pediatrician called ahead and we were immediately put in a room. The resident came in and took her history. There were so many questions. I answered the best of my ability, but I had no idea how to know what details were important enough to be included.

I was supposed to be getting ready to go on a beach vacation with my parents and instead, I were sitting in a hospital room, my world upside down. My dad came by on the way home from work. I told him it was fine to take my mom home, since she had no car and asked if they would pick BubTar up from Josh at work and keep him until we were released. I told them to go ahead and get ready for the vacation, if nothing else they could take BubTar and let him enjoy it. While both my parents were there, I left the room long enough to use the bathroom and get cash from the ATM. I had to walk across the indoor bridge to get to the ATM, and I remember passing the chapel. I thought, "How long will we be here? Is this somehow the beginning of the end? Will I be in there praying for her one day?" I remember passing sick kids and wondering if that would be us. I remember my eyes filling with tears and walking briskly to the bathroom to compose myself. I remember being afraid. We'd been to the emergency room before, for pneumonia and RSV, but I'd never felt like it was a preview to the rest of my life. I had always known we would go home and life would be normal again. I didn't know that anymore. It had only been weeks since we had seen the pediatrician and found out things weren't right, and now here I was, standing in the hospital hallway and I didn't know if anything would ever be right again.

Once everyone left, another doctor came in and asked the same questions that the resident had. I remember discussing Blue's Clues with him, although for the life of me I can't remember the context. He was a Steve fan. I liked that about him. After he left, KayTar finally started to rouse and about that time a horde of doctors descended upon us. I have never, to this day, seen so many doctors in one place. There were at least ten, maybe closer to fifteen. I felt so small and overwhelmed. There were even more questions, there were white coats and notepads, stethoscopes and sympathetic smiles. KayTar colored happily while I spoke with the doctors, effectively ignoring them. She used to ignore everyone. They did a cursory neurological evaluation and asked more questions. And more questions. Finally he recommended an EEG and gave me his card. He said he needed to see her in clinic. He also told me she needed to see a developmental psychologist for a full evaluation and gave me another card. I woke up that day with only a pediatrician. Six hours later, I had a neurologist and developmental psychologist and I had met more doctors in two hours than I had ever seen in my life. As they were leaving, two of the female doctors who had been whispering among themselves hung back. One said, "Those markers, they don't write on anything but the paper! How cool. Can I try it?" I said, "Sure, and she scribbled in KayTar's magic book. She whispered, "Wow." and giggled. I giggled, too. It was the most normal I had felt all day.



My sister came by to keep me company a bit later. She went down to the EEG lab with us. KayTar did not care for the EEG much. I had to told her down while they put the electrodes on. Then I had to lay with her in the dark, willing her to sleep after she had just taken a post-episode nap that lasted for hours. It was so stressful and as soon as she was asleep, I had to wake her again. Neither of us were happy. I was so emotionally exhausted, I could feel it in my bones.



We went back to the room to wait for results. Josh arrived sometime after the EEG was done, he had a migraine. He came in and slumped over in a chair. Before my sister left, I ran to get McDonald's from the hospital restaurant. I hadn't eaten all day. And then we waited. And waited. Finally, the resident came in and was about to explain the results when our room phone rang. It was our pediatrician. She had already spoken to the hospital and was calling to give us the very results the resident was there to give. She was so on top of things that she had beat the hospital staff to the punch. It was one of several times that day that I was reminded that we were in very, very good hands. Eventually we were released and I sank into bed that night more tired than I had ever been in my life. The next day we did meet my parents for the remainder of the vacation.



But that day, that trip to the hospital, it was the beginning. That was the day this crazy journey of ours started. The day that it really sunk in that this life, KayTar's life, our life, was different. We already knew that things were not at they should be, but this was the day when the rubber hit the road. The first time that our feet were firmly on this new path. This was the first time I looked out at the rest of my life and saw nothing but the unknown. This was the day that changed me. When I walked into the hospital that day, I knew I was a parent, but when I left, for the first time I truly understood what that meant.

This is my day late, dollar short submission for yesterday's Hump Day Hmmm. The subject was "The Journey" so I couldn't resist, even if it meant being a little late. Click the link to check out the other submissions.

Storytime with KayTar

Make photo slide shows at www.OneTrueMedia.com

This morning she was sitting on the couch reading to herself and I had to get the camera out. Some of it is memory (whatdoewwsee?), but some of it she is actually reading! The kid knocks my socks off sometimes.

Gray is my favorite color

Everyone wishes for beautiful days, days full of sunlight and warmth, bright skies and shining faces. Today I discovered a new kind of beauty, the beauty of a shapeless gray sky with cloud cover so thick that not a ray of sunlight can poke through it. The beauty of KayTar squealing and giggling happily as we drove down the road with the windows down for the first time in weeks. The beauty of my little hermit being able to play outdoors with her brother again. The beauty of screams being replaced with belly laughs. The beauty of fresh air and open spaces. The beauty of freedom for my wee one.






Okay, so maybe she squinted the whole time we were out there, but she was happy and not in actual pain...definite upgrade.

Just another medical Monday

This morning the neurologist called. The lab just put the report in last week, but he was in Canada at a conference, probably eating yummy chocolates and enjoying some free healthcare. The results are seizure free, so the eye deviations are not seizures from what we gather. She showed a spike wave while sleeping, but it was an "extremely rare" occurrence so he isn't concerned about it.

We spoke about the recent revelations that the CSF tests have given us. He concurred that KayTar doesn't really fit the typical picture, then he said, "But KayTar has never been one for typical." So very true. He agrees that the testing plan is a good one.

While I had him on the phone, I brought up the recent light sensitivity, because it is getting a little ridiculous. Saturday at Jenny's, KayTar was able to be outside for about 20 minutes, which is the longest she's been outdoors in at least two weeks, probably closer to a month. The light sensitivity has gone from something that happened only alongside episodes to an almost full time condition. Even behind sunglasses or tinted car windows it is too much for her to bear, if she is facing into the sun. If the light streams in the car window, she is thrashing and shrieking. Even with sunglasses on, I have to put her blanket over her head to walk into the therapy building from the car. We were supposed to go on vacation this week, but we had to cancel because it would be torture for her to have to be in the car for a prolonged period of time. He said he didn't really know what to make of it, but he would think on it and get back to me. He also recommended calling the ophthalmologist and speaking with her. KayTar had a normal eye exam in April, but this was not happening at that time. Her eyes have also been crossing some, in addition to the deviating we typically see. I put a call in to ophtho and we now have an appointment for Halloween. We also have a weight check appointment with the pediatrician on Halloween. Double header, gotta love it.

When we got that call last Tuesday, I remember feeling like the whole world had sped up. Everything was moving so fast after a year of moving at a snail's pace. Try as I might, I can't quite reclaim that high. It has been replaced by the feeling of normalcy, our normalcy, which probably isn't normal in the least. The testing and waiting, the phone calls and questions, the symptoms and appointments; these things have been our dance, the rhythm that marked the passing of seconds, minutes, hours, and days.

The seconds it takes to fill out a lab request form; the minutes sitting in the chair, restraining KayTar long enough to get a good stick; the hours we wait for a urine sample; the days it take to get results.

The seconds it takes to dial a phone; the minutes it takes to ask a question; the hours it takes for the message to get to the doctor; the days and sometimes weeks it takes for a reply.

The seconds before her eyes come back down where they belong; the minutes we are allowed to stay outside; the hours it takes for an episode to end; the days we have between them.

It is our dance and we've learned the steps well, but in light of the phone call last week, I can't help but entertain the thought that maybe one day soon, we'll have a whole new dance to learn, with a rhythm marked only by the beating of our hearts, the ticking of the clock, and the rising and setting of the sun.

No flashes, please.

On taxidermy, male strippers, and death threats...

How can you not enjoy a playdate when those are a few of the topics of conversation? And that was just in reference to immediate family members. Add in some competimommy mockery and cute kids and you've hit the jackpot.





The other half of the Adorable Duo belongs to the ever-fabulous Jenny.

A Watched Pee Bag Never Fills

Once I regained my ability to focus after hearing Tuesday's news, I turned to researching. It is what I always do when a possibility is presented to us in regards to KayTar. I google the hell out of it. This is tricky business, I've got to say. If you are given easily to panic and worst case scenarios, my advice is to back away from the Google. You'll find worst case scenarios for just about anything. If you have a level head and you can read past the frightening possibilities and still retain the information you are scanning, then Google can be a useful tool. I've learned more about genetics and neurology in the past year than I ever thought I would know. For every reputable source out there, there are a dozen with questionable information, so keep that in mind. The information you access on the internet is a helpful bridge between what the doctor knows and you don't know, but it doesn't replace a doctor. That said, I couldn't have had an intelligent discussion with our geneticist at any of our appointments with out some time studying online beforehand. It is a necessity. I feel capable in these appointments because I can give myself a crash course beforehand.

Back to the matter at hand. I spent a great portion of the past 24 hours researching in preparation for this appointment and I was disheartened to find that KayTar does not meet the dopa-responsive dystonia symptoms. If I am generous and stretch things a bit, she fits two of the criterion, but the bulk of it, she does not. I spoke with the pediatrician who felt the same way. She was shocked about the results. She said it is miles away from anything on the list of differentials for KayTar. We were both feeling a little iffy about this appointment, but it turned out well.

I was so concerned he would argue that she DID fit the diagnosis, that he would discount symptoms or push us into something, but he didn't. The first thing I said was,"I've been reading and she doesn't fit." and he said, "I know she doesn't. I had to dig and I was able to find only two cases similar to hers. If this is the diagnosis, it is not a typical presentation." Right then I felt at ease. I just needed to know she wasn't a square peg being shoved into a round hole. We reviewed her entire history, discussed new symptoms, reviewed the mechanics of this disorder, and went over the diagnostic plan of action. I am going to skip to the last point for you all, because the rest would be much too long.

Step 1: Blood and urine testing.
Today they drew her blood for a genetic test for DRD. The human genome is like a huge textbook, this test reads only the paragraph that codes for this problem. The test is negative in 20% of DRD cases, so it isn't definitive unless it is positive. He is also testing her urine for biopterin and neopterin, this is also in regards to DRD. We were at the hospital from 8:45-1:30. From 11 on, we were standing around waiting for KayTar to fill her urine bag. She was wearing it from about 10:30. No pee. FOR HOURS. The lab finally cranked the air conditioning to make it very cold and we had to rub ice packs on KayTar's thighs and spine...finally after 15 minutes or so of this, she peed! Halle-freaking-lujah. She also randomly vomited on Josh, who was so late getting back to work because she would not pee, that he went to work in the clothes she puked on. What a dad.

Step 2: Repeated LP.
An LP is a lumbar puncture, also known as a spinal tap. We have to repeat this test because her CSF sat in storage in a lab for two weeks before the most recent tests were run. He has to be certain that the levels didn't somehow change in that time. He has spoken with another doctor, who is said to be one of the top two doctors in this field in the country, and he agreed to do the testing himself and rush it for us. Once she gets the LP, we will know the results in roughly two days. If the LP confirms, then she starts treatment. The LP will probably be scheduled for October 22nd.

Step 3: Phenylalanine infusion.
To explain this one, it would take way more brain power than I currently possess, and chances are your eyes would glaze over with the boring, boringness of it all. So here's the summary, blah blah, proteins, blah, phenylalanine into tyrosine, blah, blah, vitamins, blah, co-factors, blah, neopterin and biopterin, blahby-blah-blah, deficiency, BLAH, dopamine. Blah. Big circle. Got that? ;) I really do understand it...but I don't have the energy to regurgitate it right now. Anyway, they will give her a phenylalanine infusion and then take her blood every hour for four hours and test her levels. If she has DRD, then her body will react a certain way. If she does not, it will respond in the typical fashion.

Basically, we are waiting on the LP to confirm results and then we start treatment if we get the same results. The thing is, since this is an atypical case, even when we do start treatment, we aren't exactly sure what will be corrected and what won't be. She doesn't match the symptoms, so we don't know how her symptoms will respond. We don't know what is from the DRD and what isn't, if she does have it. Right not the plan is just to confirm the diagnosis and treat it. Once treatment starts, we'll see what fixes itself and what is left and go from there.

And so we wait just a bit longer, after all, we've gotten pretty damn good at it.


Wormy, KayTar's new caterpillar friend. They had a big table of all different kinds and sizes of nice stuffies that they were giving away to the kids in the hospital. KayTar chose Wormy and she is just in love.

This could be it.

The geneticist just called me. He said the last batch of testing yielded significant results. He is pretty sure of KayTar's diagnosis. I think I almost died. DIED. I'm shaking. Seriously. You hope for an answer every single day, and then you get test after test after test that come back normal or abnormal without any conclusive answer and you stop expecting an answer. Then it happens and you freak the hell out. I was talking to him and making notes while periodically covering the phone and whispering "Holy shit! HOLY FECKING SHIT!" while jumping up and down.

He thinks she has dopa responsive dystonia. I was freaking out so I can't remember the exact findings, but they were evidently convincing. He said it explains her brain abnormalities, her delays, and her episodes. He said it is treatable and you see results in just a few days. Kids who can't walk, suddenly can in a matter of days. Kids who aren't talking, suddenly are talking in a matter of days. The treatment makes a huge difference. I AM FREAKING OUT! Holy crap. This might be it. The answer.

She has to go in for another lumbar puncture, because they have to make sure it wasn't a lab error, but this could be it. It might be it. This is the first time someone has said, with any medical certainty, that they might know what she has. He also wants to do a gene study. He said 80% of cases test positive for a mutation, but that means 20% do not. So, the CSF test is to confirm, the gene study is less important, but could be informative. It is still a maybe, but he feels so strongly that this might be it that we have a genetics appointment on Thursday. These appointments are booked 8 months in advance and we got one for two days from now, just like that. The geneticist himself called me, that doesn't happen. There are genetic counselors for that. He called so quickly that he beat the counselor to it and she had no idea he had already called!

I don't even know what else to say. This might be it and I cannot believe it. I didn't know if we'd ever get this close and here we are. It is so surreal. This could be it. We might be done searching. We might actually have an answer.

PS: After the appointment, I'll give you the run down of what exactly it all means, but I couldn't wait that long to get this posted. Make sure you check out the post below this one for some fun photos of Josh and I.

ETA: The comments on this post are the text equivalent to a room full of friends jumping up and down and squealing in excitement with me. It was exactly what I needed. Thank you guys so much. I'll let you know what happens tomorrow.

The ManTar

1. Who is your man? Josh

2. How long have you been together? Hmmm, if we are talking from the first time we dated, then eleven years this Christmas break. If we are talking about when we started dating again, then ten years next April. If we are talking about marriage, then six years.

3. How long did you date? Depends on how you look at it. I'll say, three years consecutively before we married.



4. How old is your man? 24

5. Who eats more? I think we roughly eat the same amount. He might eat a tad more than me at times.

6. Who said "I love you" first? He did, when I was thirteen, behind an elementary school in my neighborhood.


7. Who is taller? He is.

8. Who sings better? I'm going to say me.

9. Who is smarter? Books smarts, it would be me. Technical smarts, it would be Josh.


10. Whose temper is worse? I'm going to have to say me. Josh has no temper most of the time. I don't even know if mine qualifies as temper, it is more a reflexive response when my feelings are hurt. I'm not an angry person.

11. Who does the laundry? Like Kristin, I do the laundry and Josh does the dishes. I can't stand to touch old food. Blech.

12. Who takes out the garbage? Josh. I feel the same way about trash as I do about old food.


13. Who sleeps on the right side of the bed? When laying in bed, I'm on the right.

14. Who pays the bills? Josh does.

15. Who is better with the computer?
Well, since I married Josh for the free IT support, I'd have to say he is.



16. Who mows the lawn? Josh all the way. When we see women outside their homes doing lawn work, he always points it out and says, "She's doing the lawn!" and I reply, "Would you rather marry her?" I always win that one. ;)

17. Who cooks dinner? Josh. Okay, it is really starting to sound like I do nothing around here. ;)

18. Who drives when you are together? Josh does. I hate driving with other adults, I always feel like my driving is being critiqued. I think driver's ed left me with some post-traumatic stress.

19. Who pays when you go out? Josh typically does, unless he's busy with the kids.

(the other woman is his little sister, also known as my best friend)

20. Who is most stubborn? Definitely me. He can be stubborn about some things, but I can really dig my heels in at times.

21. Who is the first to admit when they are wrong? I usually do a pretty good of staying in the right, but if and when I am wrong, I will fess up. Josh, too. I think we are about equal on this one.

22. Whose parents do you see the most? Mine. My mom helps out a ton with BubTar and so we are their frequently. Plus, they have a swimming pool! We see Josh's parents just a tiny bit less, though. They get a good amount of face time, too.

23. Who kissed who first? Me, but only because he said (oh so dramatically) "Kiss me, Kyla." and I did. I totally rag on him for saying that the way he did and he says, "It worked, didn't it?" He's right. It always worked.


24. Who asked who out? Any way you slice it, Josh did the asking. Now we have some disagreement on when this happened. He claims that one night, after meeting in person, in our chatroom he asked me out and I accepted, but the next day I didn't remember it at all. I didn't even remember talking to him that night. He thinks I got cold feet and tried to play it off. The next time he asked, I accepted. He thinks, to this day, that I do remember that first query, and I am just too stubborn to admit it. I say, he is delusional. The only explanation I can offer is that I took TheraFlu before going to bed that night, and TheraFlu makes me high as a kite. I could easily have woken up, hopped online for a bit, and gone back to bed and not remembered it. He's not buying it, though.

25. Who proposed? Josh. It was a surprise. He had been saving up for the ring and it was supposed to take much longer than it did.


26. Who is more sensitive? Me. Definitely me.

27. Who has more friends? Me, I think.

28. Who has more siblings? Josh. He has five siblings.

29. Who wears the pants in the family? We share them. I think there are issues we are both passionate about and defer to the other on, but all real decisions are made together. There isn't one pants-wearer in this house.



Tagsies! I am going to pick the dear Flutter because her man just had a birthday and I'd love to hear more about him, Slouching Mom because she recently posted about a day she and her husband unknowingly shared as children, and Beck because she and her husband just shared a special anniversary.

Cheers!

The reality is...

I had second and third and fourth thoughts about hitting publish on my last post. I rewrote it twice. It felt too whiny, too needy, too woe is me. I don't like being that person. This situation has been so much more difficult than it currently is, I feel ungrateful when I let it get to me, and even more ungrateful when I put those feelings in writing. There are worse things than missing test results or unknown diagnoses. There are women who have lost their children, who would give anything to be waiting on test results, if only that meant their child was still with them. There are people who have their answers, only they aren't the kind they'd like. Answers that tell parents how many days they have left with their children or paints a grim picture of what those days will hold. There are worse things than wondering.

At the same time, I try my best to be real in this space. I started this blog because I wanted to say things that I felt I couldn't say in my day to day life. I wanted to be honest instead of smiling while assuring people that everything is just fine. Because sometimes, things are not fine. Sometimes things are difficult. It may not compare to the toughest stuff out there, it can still be tough. Life can be tough for anyone at any moment. To paint a picture that shows otherwise is false.

There are choices in blogging. You choose how far you let others in, how honest you are, what light you paint yourself in. The words I share and withhold create the version of me that you all know. I could easily leave out those moments where I'm faltering. I could share only my strongest times, present myself steadfast in my strength. But that isn't who I am, and it is never who I want to be in this space. This is my space, the one corner of the world I let myself be whole. The place where I don't hide parts of myself. A place where parents in similar situations can find common ground, shared joys and struggles, I don't want to cheapen that by being less than honest about how it wears on me. It does wear on me. It wears on all of us at times.

So, no matter how difficult I find it to hit that publish button when it feels like I am being an ungrateful prick, I will do it. I will show you my weaknesses, because all of you have shared your hearts with me, and I can do no less than return the honor.

MY HEART

This is what it looks like when your subconscious explodes

Last night I had a dream based loosely on reality.

In it, I was impatiently waiting on the EEG results from our hospital stay six weeks ago.

In reality, I am still waiting on those results.

In the dream, I spent my time making phone calls to attempt to track down the results. I called the neurology chief, other neurologists in the same clinic, I called anyone and everyone I could think of. I was tired of waiting.

In reality, I have been calling the neurologist weekly for at least four weeks. I have received exactly one return call, two weeks ago, in which he told me that the lab never sent him her results. He said he could check on it and call me the following week. I have had no call backs since then, and I have left several more messages, both with the receptionist and his secretary. Our pediatrician has attempted to contact him as well, with no replies. I went so far as to contact the EMU (epilepsy monitoring unit) lab to get more information about the delay, but have received no return calls.

In the dream, the neurologist finally returned my call. He said, "Kyla, remember the last time we spoke? I asked you to call and ask your audiologist for some information on KayTar. I told you I could not read the EEG results until I had that information." Suddenly, I had a flashback, and indeed I did remember his request during the previous phone call. I immediately called the audiologist, retrieved the information and passed it along. I spent the remainder of the dream calling all of the people I had harassed unnecessarily in my pursuit of answers. I had to tell them that it turned out not to be the doctor's fault at all, but it was my own mistake causing the hold up.

It took me five or ten minutes upon waking to differentiate between the dream and reality. For a while, I thought, "That's it! I just need to call the audiologist and get that information!" But slowly, I realized that was only the case in my dream. I do need to call the audiologist, but in regards to a completely separate issue. I woke feeling both relieved and embarrassed. The beauty of the dream was because the delay was my fault all along, I had the power to rectify the situation. In reality, I have no bearing on when my calls get answered or what the outcomes are. I felt embarrassed because I had caused such a fuss when I was actually the cause of the delay. At this point, I would gladly take the embarrassment if it meant I also had the power to track down the answers I'm seeking.

The elusive answers aren't only tied up in this EEG, they are lurking everywhere. In the meeting yesterday, I think the act of verbally listing exactly how much we don't know cracked the seal on the big ol' bottle of crazy I keep sealed tightly inside. My dream was the teeniest bit of pressurized air seeping out and in its wake, the contents of the bottle are shifting and churning. The questions I keep silenced inside range from serious to inconsequential, but the punctuation at the end begs for an answer regardless of the severity. I could list them for you, in fact, I started to while composing this post...it just felt like too much. I didn't want to hit post and see those questions staring back at me.

I hate looking at things like this. There were times when the waiting was so much harder. Times when I was terrified, times when I thought I'd lose her forever. Times when she wasn't thriving, her weight was down, she wasn't progressing and every day felt heavy and I was constantly filled with a quiet sense of dread. There certainly are worse things than unanswered questions, but when you are stuck in the limbo of not knowing, you are forced to entertain the possibility that the outcome might not be rose colored. Things are changing, she has more symptoms than she did a year ago, in spite of her developmental progress. I don't know what it means for her. When you don't really know, nothing is guaranteed. I forget this often; I prefer to look at the other side of things. I choose to dwell on her accomplishments, how far she has come, how far she is going. But medically speaking, I don't know much about her situation, no one does. When I'm forced to really think about that and I see just how wispy those threads of information are, it knocks me off balance. When my dreams highlight how little control I actually have over the situation, I spend the next day in a sort of mental fog, the air feels thick and full with the specters of those unanswered questions hovering around me. Questions that, unfortunately, I have no authority to answer.

120 days...

Until my baby turns three and starts school, so saith the meeting I attended today. We had our very first meeting with the school district today, aptly referred to as a 120 day meeting. It was mostly an exchange of paperwork on both sides. I was given information about the process and the programs, and in turned I offered up a cursory review of all things KayTar.

The coordinator for the district was friendly enough, she reviewed the remainder of the process before placement and then reviewed the various levels of placement within the district. I didn't have a couple pieces of paperwork on hand, so I'll have to run those by next week. Once those are handed off, we will schedule a cursory evaluation, probably for November, and from there they will decide if an intensive evaluation is necessary. The placement levels range from speech therapy once or twice a week to three hour/five day per week special education preschool. The mid-range placements include intensive language labs for longer time periods twice per week and community-based preschool. The community-based preschool is housed in area preschools with district appointed special-ed teachers in the classroom. The classes house six special needs children and twelve typically developing children. The classroom ratio is between 6:1 or 5:1 in those classrooms. The special-ed preschool program has a ratio of 3:1.

I gave a quick, concentrated overview of KayTar's weaknesses and medical hoopla. I feel really quite capable when discussing her delays, because I know them intimately. However, the medical issues are always fun to discuss because it is filled with so many gaps and "I don't really know what's going on." I get to say intelligent sounding things like:

"She has these drop attacks where she is just laid flat out. It might be dizziness or it might be seizures. We don't know."

"She has these things we call 'eye deviations' where her eyes roll up and over in her head and stay for a few seconds, then they come back down. Yeah, they might be seizures, but we don't know. We're still waiting on EEG results from last month. Wait, I mean TWO months ago now."

"Well, she might be having migraines OR seizures, or migraines AND seizures, or maybe one night Migraine and Seizure had a little too much to drink, put on a little Barry White, got carried away, and made a lovechild in her brain. We don't know."

"So to sum up, WE DON'T KNOW."

Good times! It is always nice to be reminded how little we actually know. Very refreshing. Based on our conversations, I have a feeling that if KayTar qualifies for placement in a classroom (and I hope she does, because she needs it), I think she would likely end up in the 5 day program, because I believe those teachers are the most equipped to deal with the medical side of her case. This is just my feeling and not representative of anything that was hinted to on their part, all of that will wait until the evaluations have been done. This meeting was fairly quick and easy, KayTar didn't even need to be present. The next meeting will probably take place sometime in November and we'll go from there.

Can it really be time for this tiny pink peanut to start school?

Wordless [Delurking] Wednesday: 1 month

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I know it is Wordless Wednesday, but it is also Delurking Day! So I'm calling you out...yes, you! Back there in the shadows, wearing the trench coat and dark glasses! I see you here all the time, but you just sneak in and out, so quietly. Today is a holiday just for you, say hello! I'd love to meet you.

To give you a topic of conversation (other than telling me how cute the kids are, because, let's face it...squishy little babies are always adorable) I offer this question: What is your favorite late night snack?

This isn't hardball, so speak up! :)

PS: In case you missed it, KayTar learned to somersault last night and there is a lovely video just there. Usually I don't stack posts so close together, but today was a double whammy so I bent the rules.

This just in!

KayTar learned how to somersault this evening!

Make an on-line slide show at www.OneTrueMedia.com

Yes, I know a 3 minute video of my toddler somersaulting is just a wee bit self-indulgent, but I'm a blogger, so I'm entitled, right? Right.

And also? She did it for at least 45 minutes straight, so this is the incredibly condensed version. Feel lucky. I was repeating, "Push off, and ROLL!" every 30 seconds for 45 minutes. At one point she told me, "Do it! With mouth! WOOHOO KAYTAR!" Which translates roughly to, "Hey you! You are SUPPOSED to be CHEERING! Get with it!" (check out Sage's comment, I think she nailed the PERFECT translation)

But she is doing it! Wait until we show her physical therapist on Thursday! :)

The Sky Above Ablaze*

Today is a beautiful day. Breathtakingly beautiful. The sort of day that makes you long to be at the park, swinging high into the sky. The kind of day that forces my camera to point skyward rather than at the ankle biters tugging on my pants. A day without humidity or stifling heat. A day with a soft breeze, clear sky, and warming sun. Beauty.






And yet, in the midst of this beautiful day, we are indoors once again. KayTar is having a sensitive day, which seem to be becoming the rule rather than the exception. Last month, she had a solid two week block where we couldn't go outside (even to walk to the car or through a parking lot) without her screaming and clawing her eyes.

Because today is so beautiful, on the way to pick BubTar up from school, I rolled our windows down. Instantly she was screaming and thrashing around in her seat and I had to roll them back up, so she could be safely and comfortably behind the tinted glass. When she is feeling her best, she loves having the windows down; she giggles into the wind as it streams in her window, ruffling her hair and tickling her skin. Today she just isn't quite feeling her best.

Upon discovering the delightful weather this morning, I decided to take the kids to the park after school. I thought we could just stop by on the way home from BubTar's school, spend a little time swinging and sliding before heading home for lunch, but the park just wasn't in the cards for us. If KayTar can't stand the sunlight from an open car window, there is no way she can tolerate it long enough for a jaunt around the park. There will be plenty of other days to be filled with sunlight and swings.

So for today, we'll just admire the beauty from afar.




*bonus points if you can name the song, it is one of KayTar's favorites.