In Case You Missed It: KayTar Medical Edition

Because everything has been so muddled in the past few months, and because I have new readers, I'm going to try and do a lovely little summary of KayTar's medical issues and the current theories surrounding them.

1. Episodes.
KayTar has frequent (although we are currently on the second longest break since last July) neurological attacks, so to speak. The current theory is that they are a type of migraine syndrome, either paroxysmal torticollis or hemiplegic migraine. She experiences various combinations of the following symptoms during any given episode:
*Head tilt. This is the ONLY consistent symptom with every episode.
*Vomiting.
*Extreme light sensitivity
*Strange eye behavior, looks like they are flickering or rolling backwards at times.
*loss of conscious awareness
*drunk and silly behavior
*altered awareness
*extreme dizziness
*inability to use her legs
I think I might be forgetting a few things, but these are the major players. They last roughly 8 hours, although at the beginning they were only about 30 minutes in duration.

2.Lesions on her frontal and parietal lobes.
KayTar has 5-6 (I can't remember the exact number) of very small lesions sprinkled in these areas of the brain. Previously, we were concerned about the big scaries like leukodystrophy, that end in...well...the OPPOSITE of LIVING. But with this last MRI, no growth was shown and we feel safe in saying it is not progressive and the damage has been done previously. It doesn't sound wonderful when I write it that way, but it really is a HUGE relief. Children's brains are amazing and we've already seen such great strides with KayTar. The current theory is that her brain was damaged in the third trimester of my pregnancy, likely by a virus, the major suspect at this time is CMV, especially with the hearing issue coming to light. The worrisome thing about the theory of congenital CMV is the possibility that her hearing loss will continue to deteriorate and her vision might follow, I think it is a small possibility, though. Tomorrow I am scheduling a follow up with her ophthalmologist to make sure her eyes are still working well.

3.Hearing Loss.
This is brand new from today! KayTar has moderate to severe hearing loss in her left ear. She was fitted for a hearing aid and we will need to see and ENT in the next few weeks before she receives her aid. The current theory for this is that is was also caused by a virus logically the same that caused the lesions, likely our friend CMV.

4.Sensory Stuff.
Oooh boy! I could spend hours on this, but I will spare you. She is extremely sensitive to certain textures, odors, flavors, feelings on her skin. The following things make her gag/vomit by touch alone:
Shaving cream
Cake frosting
Bananas
Play Doh
Fruit Snacks
And other things alone these lines.
When she is sick, her sensory sensitivities are kicked into overdrive, causing a complete refusal of all food and liquid. It gets so bad that we cannot even open food packages for ourselves in front of her, much less let her see us eat. It landed us in the hospital pretty quickly in January. I believe the theory is that this is also tied in to the lesions, due to the placement, though I'm not 100% on this one.

5.Eating...or lack thereof.
Again, I could go on all day. KayTar is in feeding therapy currently. She sees a dietitian. Because of her sensory issues, she is on a largely pureed baby food diet. She can eat some stage 3's if she's having a good day, but they are hit and miss. She can eat bites of things like crackers and french fries, but not enough to glean any nutritional value from them. She won't try any food that offend her texture preferences or things that are in small pieces, like Cheerios. A new facet of this is that she isn't really getting as much fluid as she need on a daily basis. She had fallen way off her growth chart when we switch pediatricians in July, and we've only been able to get her weight back up with a healthy regimen of Pediasure. About 75% of her calories currently come from Pediasure. As I said, this is largely tied to her sensory issues.

6.Chronic Constipation.
Ah, the art of Fecal Midwifery. We have manually delivered way too many twosies in our time as parents. KayTar takes two doses of Miralax a day, which makes things run much smoother. We will see the GI doctor in April.

7.Developmental Delays.
We are actually beginning to close this gap a bit...it is nowhere near closed, but smaller than it once was. She is still quite delayed, especially with her gross motors skills, seeing as she just began walking at 24 months. She largely uses sign to communicate, but prior to that she had zero words. She has developmental, occupational, feeding, physical, and speech therapies on a regular basis. These are also linked to our buddies the lesions. Even though she is quite delayed in some areas, in many areas is is actually advanced. Her therapists are often wowed by her sign language acquisition or her attention to detail, correcting them when they say "Chicken" when it is really a "Rooster", little things like that. She is also a letter-whiz. She knows the alphabet, really knows it, not just by the song. She will see a letter on a sign and start reciting the alphabet from there. "P." "P Q R S T U V W X Y X." One of her favorite things to do is hand me the color to write random letters for her to name. The girl loves her letters. I won't take up too much space here bragging, because its not the purpose, but the girl hangs at both ends of the developmental spectrum.

8.Eye jerking. (for lack of a better term)
KayTar's eyes randomly and involuntarily, roll/jerk over to the far left. Sometimes it happens once every few hours, sometimes it can happen 30 times in 30 minutes. We have ruled out seizures and any big baddies hanging out in her lovely little brain, so this isn't all that worrisome, but being that it is quite odd, I'd like to get to the bottom of it. There really is no theory right now.

There is also the matter of her bendy little feet, but I don't think that needs its own bullet quite yet. I don't think its a big deal, but of course I didn't think she had hearing loss either! I'll keep you posted if that one makes the list.

I think that about covers it, if I remember something else I'll add it as it comes to mind. If you have any questions, leave them in the comments and I'll do my best to make things clear for ya! I'm off to have a stiff drink now, because seeing it all lined up like that makes me feel a little THIRSTY.

KayTar says "Thank you." for your time ladies and gent(s?).

And the answer is...

Oh my. The ABR was a nightmare. If OTJ is right and this is a early example of my child's drunken behavior? LORD HELP ME. She is a belligerent little drunkard. Never in my life have I seen her fight like that. Wow. It was impressive. She so badly wanted to keep playing on the floor with the toys, but she kept falling over and smacking her head on things. I had to pick her up and hold her and she was not pleased. She screamed and kicked and writhed in my arms, for thirty minutes at least. A long thirty minutes. It took so long to calm her and get her to sleep that the nurse was coming in with a second dose when she finally quieted. Once she was asleep, it was much more pleasant. I read a magazine while the audiologist did her thing.

Turns out, KayTar has moderate to severe hearing loss in her left ear. Her right ear functions normally. She was fitted for her hearing aid today and after we see the ENT, she will have a pretty new ear accessory. The audiologist said that being deaf in one ear makes it difficult for her to hear when there is background noise, or to tell where a sound is coming from. The aid will help with that. She also said that if this was caused by a virus, like CMV (a suspect in regards to the lesions, too), her hearing could continue to deteriorate in both ears. She needs hearing tests every 3 months to keep an eye on it. So there it is! I'm glad we know and can start helping her now! Thanks for thinking of us today!

ABR in the AM

Tomorrow KayTar has her ABR.

This month has just been one gigantic sigh of relief. No seizures, stable MRI, she's walking, episode free for 24 days. It has been really wonderful. Regardless of the results, tomorrow will just be one more wonderful thing added on to that list. Either we will walk away tomorrow and know that she can hear perfectly well, or we will walk away knowing that she has hearing loss and will be able to get the help she needs. Tomorrow changes nothing, it only provides us with knowledge, and as cliche as it might be, knowledge really is power in situations like these.

I'll post again once we are home. I think we will find out the results while we are at the appointment. I'll leave you with something pretty to look at in the meantime.

Halle-freaking-lujah

Hello there!


I spoke to the pediatrician today. The MRI's are the same. No changes. No growth. No new development. WHEW!!! It is really, really, really amazingly reassuring to hear that.

In regards to the episode she said "I got your message and I don't want to say anything (because of the jinxing) but it is very good, and that is all I'll say."

Yesterday we went to the zoo with our child-free friends and had a lovely time. Both kids thoroughly enjoyed themselves, although if you asked BubTar today, he will say "I didn't like anything. I only wanted to see the zebras and I didn't. *pout*" Because this post is so short, I'll share some photos.












Gotta go!

but I will wait, yes, I will wait for the truth

I've come at this post a few different ways, and I can't find a shtick that works for it. So, I'm just going to use the tried and true method: outright whining. Sound good? Good.

I'm still waiting on the MRI results. The MRI was over a week ago. The hospital told me to expect results on Tuesday at the latest. *sigh* No such luck. The pediatrician did email me (because she is wonderful) to let me know that the interpretation was extremely detailed and she is waiting on the neurologist to read over it in full and discuss it with her before she says much. She did, however, say the lesions from last time look stable, but she is reluctant to say much else just yet. That in itself is wonderful. No growth is very, very good. I heaved a great sigh of relief when I heard that. I just wonder what is in the details. I was hoping that the MRI's would be exactly the same this time around...and if that were the case, I don't think there would be so much to review. Can't they just stamp "No Change" on the thing and send it along? *lol* In October, our MRI was on the 20th, and we knew the results by the 23rd. A three day turn around is nice! But this? Its given me a bit too much time to wonder what exactly is going on. I'm not panicked or terrified, just antsy. I think they are doing their best to be thorough and really look for answers this go-round and that could be why it is taking a bit longer. I hope. Waiting isn't my strong suit if you hadn't figured that out by now.

On the flip side, we are waiting on an episode and I hope it never shows! I wasn't going to mention this, due to the jinxing but I've decided to throw down the gauntlet. If an episode is going to show because of a little jinxy-poo, let it be so...or not...I really hope NOT. Today is day 22. This is the second longest we've gone without an episode since they started in July. The longest was 32 days, and was at the peak of Periactin dosing. She isn't on any preventative meds at the moment. Because we like to make up assinine theories around here, I'll share mine. She was due for one on the day of her MRI...so when they knocked her out it rebooted her internal clock and bought us two additional weeks. *lol* Josh says that he hasn't had a headache for the same about of time. He said there was even a day he would have put money on getting a headache, but it never happened. I think its weird he can sense a headache is probably before it ever starts. His theory is that by the next time he has a headache, she will be having an episode around the same time. Those two certainly keep me on my toes. Either way, I'll keep you posted. Whether she does eventually get around to having one or not, the reprieve has been glorious. I hope it continues. :)

Real Moms...

Take photographs of their children's freakish abilities and post them online for all to see.





She can turn them both in at the same time, but I'd need a third hand for taking the photo and alas, I have no third hand, which brings me to:

Real Moms sometimes need three hands or more. *lol*

I was tagged for this Real Mom meme by both Em and Kari (who happens to be my roomie for BlogHer! My tickets have been purchased! Woohoo!)

Brag-a-thon 2007

On Sunday, my sweet little KayTar started walking. Finally. At 24 months and 24 days in this world, she stood up on her own two feet and walked forward of her own accord. It just happened. She was on the trampoline with BubTar and Josh was watching them from the kitchen door(the tramp is enclosed, we call it the Cage of Doom, and it is three steps out the kitchen door) and he said "I can't believe I just saw that." I asked, "What?" and he replied, "KayTar just stood up on her own and walked to BubTar." to which I then replied, "LIAR! SHUT UP!" And went to watch for myself. And she did it! Ang she did it again! And again! 2 hours later, we took the video you saw of her doing it like a pro across the room. BAM! And she can do it, just like that. She realized, "Wow! You can stand up from the GROUND? Really?? THAT makes a lot more sense. Sheesh." She is still crawling a VAST amount, but out of the corner of my eye I'll see her just get up and go, and it shocks me to the core every single time. Unbelievable. I couldn't sleep the first night, I just laid in bed with adrenaline coursing through my veins, because my baby can walk. Good God.

On Monday, she uttered her first two word combo, "Big car!" while pointing to a truck.

On Tuesday, she repeated "Big car!" 300 times, just to be sure we heard her the first 299 times.

On Wednesday, in feeding therapy, she drew a snake. All on her own. She had a green marker that she used to color a blob, attached to a line going down into a big swirly. Then she lifted the marker and said/signed "Snake!" And it looked like a snake. She also critiqued the therapists attempt at art. She requested that the therapist draw a dog, but upon seeing the finished product, KayTar exclaimed "Cat!" and pointed at the so-called dog. Then she picked up the marker, handed it BACK to the therapist and said "Dog!" demanding it be done properly and to her artistic satisfaction. She also colored in tiny circles on the drawing of a car. The circles were the diameter of a pencil eraser, and she scarcely got out of the lines. The therapist kept commenting on how intelligent and advanced she is. Her FT said she thinks KayTar would make a great architect because she is so good with artistic details and her fine motor skills.

In occupational therapy, she was making lots of artistic markings on the page, obviously with some sort of purpose I could not identify, and then she stopped and said "J!" and pointed to a spot on the page. And there WAS a J, crossed on top and all, no bigger than an inch tall. Purposeful? Who knows. But the kid drew a J and she just turned two last month. Her OT said she is very advanced for her age cognitively. She used the word savant because her cognitive functioning is so much higher than her other levels of functioning. I don't know about THAT, but she is definitely not going by anyone else's milestone chart!!

In other news, I've discovered her feet can turn over 180 degrees. I'm talking, her heel is on top, toenails face down on the floor. Both feet can do this. It is WEIRD. I'll have to take a picture of it for you all when she's feeling cooperative.

Still no MRI results. I had a dream that the pediatrician knew the results were not good, but she didn't want to tell us and kill our "She's WALKING!" buzz. *lol* The subconscious mind. Gotta love it, right?

Oh. Em. Gee.

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That is all.

Found Video

This was Katie when we start seeing the new pediatrician, she was roughly 17 months old.

Photo and video editing at onetruemedia.com

This is a video from last week (most of you have seen it already).

Photo and video editing at onetruemedia.com

Although she isn't doing anything spectacular in the second video, the change is unbelieveable. She's made up for more than a year's worth of development in months. In the first video, she is a 17 month old functioning at a 5 month old level. Now, the kid knows all of her letters and more signs than her therapists. She's taking 15 steps at a time. She's speaking. I had to post this, because I've talked about where she was functioning when we began all of this, but seeing it on video says more than I can with words alone.


**************
Also, sorry for the text-light posts as of late. My brain is some place else, namely, it is pacing up and down the corridors in my head wringing its hands until the MRI results come in. As much as I am sure the results will be just fine, it is always a less than comfortable wait.

MRI? Check! Photos? Check!

This morning we woke up entirely too early and dragged our sorry behinds to the Children's Hospital. We changed KayTar's diaper and left her in her jammies because she was so very sleepy. On the way, a truck drove past us with a sign on the door displaying "MRI", the name of their company. This amused me to no end. I am easily amused, obviously.

We arrived on time at 6:14 (one minute to spare, go us!) and we arrived home at 10:30. It went very well. They got the IV in one try, which is always a relief. The nurses in the imaging department seem to possess greater skill in this area than in the ER. I appreciate that. Because of her hospital stay in January, she now understands the rules about not ripping out her IV, so they didn't have to tape her other hand into a useless fist this time. Once she was put to sleep (which Josh found highly entertaining as he witnessed it for the first time) we went and ate breakfast and then sat in the waiting area forever. She was so cranky when she woke up and made it clear she wanted nothing more than to roll over and go right back to sleep. She perked up a bit in the car. All in all it went incredibly smoothly and she is now drinking a bottle in her crib. We should have the results by Tuesday at the latest. I feel good about things, I really would be shocked if there was a new development. I'm just expecting the same old news this time around.

For your viewing pleasure:

KayTar eyeing her bracelet suspiciously...she knows what it means: "Needles are coming soon."


Chilling in the waiting area, with her crazy bed head.


On the way home, sunglasses and a yawn.

Sleep Wanted

Josh worked until 4am this morning. I don't sleep when he isn't here, so I am very tired today. While I was killing time in the wee hours of the morning, I wrote two posts, neither of which will ever see the light of day. I was blathering on about things, but by the time I finished writing it out, I felt so much better about things that they no longer needed to be said. This morning, I'm all out of material and coherent thinking, so I leave you with two videos.

Doing Math the BubTar way:

Photo and video editing at onetruemedia.com

My favorite part is the way he counts his fingers with his face. :)

And a combination video of KayTar's weird eye thing and pure cuteness. In the second segment, she does the eye thing again towards the end, while we discuss "Fun". In the first segment, it doesn't quite capture the fact she isn't looking off to the side on purpose...but she isn't. It doesn't quite capture the oddness of the in person experience, but it is better than nothing.

Make video montages at onetruemedia.com

Christy suggested maybe it is a tic rather than nystagmus. That seems plausible because it really doesn't resemble nystagmus much at all, except that it is involuntary eye movement. Who knows? I surely don't. But it is weird and happens way too often for us to not know what it is. I just want the doctors to see it in person and determine if it is anything that matters. We see it 15-30 times daily on a normal day, sometimes more. We can only see it when she is still and looking in our direction, which is a small percentage of the day, so it is probably happening more often. It happens through the day, I haven't noticed any pattern to it. Every so often, there they go again, off to the side. Sometimes it happens several times in a row. Sometimes once. I'm hoping its nothing. But the fact that it is a new development of any kind, just makes me want to make sure the doctors understand what is happening and can tell us if its anything or not, so we can get it off our plate of things to think about.

MRI is tomorrow. Wish us luck.

Welcome, You have BMail

Tonight I was dutifully entering data into KayTar's input/output spreadsheet, and I typed the following "wet/BM@7:30" and hit the Enter key.

(click to make larger)


And it immediately pulled up the following:

(click to make larger)


And it totally cracked me up. Like tears streaming down my face kind of cracking up. The notion that Excel thought that my child's poop was an email address was just too hysterical for me. Not only did Excel think it was an email address, it was EAGER to email something to my child's poop. In this fit of laughter, which no one else in the room understood, my son asked "What's so funny, Mom?" and I replied, "Its emailing POOP!" *hysterical laughter*

And now? He keeps shouting "Its emailing POOP! Its emailing POOP!"

Oh God, what have I done? *lol*

What I did this weekend...

I started an 80's themed jazzercise class for preschoolers:


I somehow got KayTar to allow me to put a bow in her hair and smile for the camera:


I met these folks:


It was a lot of fun. Everyone who came just sat around and chatted and had drinks. They are indeed real people for those of you that asked, and they are very nice and quite funny, as well. I'm calling it personal growth, because I'm not one to throw myself into these types of situations. The kind where EVERYONE in the room is a stranger? I have a tendency to run from them screaming, and if I can't get out of going, I usually am super shy and reserved. Not so much this time. And it was fun. Plus, this is the longest I have been away from KayTar in about 8 months and nobody died, so it was reassuring in that regard as well. Yay for nobody dying!





I have a few more photos, but you know, its rude to post pictures of other people picking their noses and whatnot without permission...so those will have to wait. Heh.

The boys camped out back on Saturday night, so I had the house to myself. Niiiiiiice.


Then last night a friend and I went out to dinner. Without kids. Two kid-free outings in one weekend. And it was goooooood.

Today is the first day of Spring Break for BubTar, so I consider the away time psychological preparation for the endless chatter and questions the next 5 days will provide me with. And it has already begun. Oh yes, it has.

Now please, forget that you've ever seen a picture of me. *lol* It is visual proof that I really am an infant. :)

Thursday, Friday, Saturday!

Thursday, KayTar had PT and she did amazingly. She is up to 12-15 steps without falling over! During PT, her eye issue really acted up the "jerks" were clustering and her eyes were staying off to the side for long enough for me to say "KayTar! KaaaayTar! *snap, clap*" trying to get her to look at me. It did not change what was happening, of course, but it did make me feel like I was doing something. It calmed down again, and we told the pediatrician, who told the neurologist; and everyone is looking forward to the MRI next week. I think they might be a bit more antsy if we didn't have that right around the corner. I know I would feel A LOT more antsy if it wasn't so close. She did say that it is very worrisome when it emerges in an otherwise healthy child, but because of KayTar's various issues it may just be an evolution of what is already occuring. We will see next Friday, thankfully.

Friday, this morning we met with the nutritionist, and it was very reassuring. She worked her mathematical magic on my Excel speadsheet record to figure out the average calories KayTar is pulling in a day (roughly 780). She is still gaining weight at this caloric intake, so she thinks that our new goal is to get 750-800 calories in on a daily basis. This will be easier than shooting for 1100, which we weren't making anyway. And over half of her calories are from Pediasure, so it is definite that she will be on it for a good bit longer. She did say KayTar needs more fluids on a daily basis, so that is something that will take some work. We bought some Gerber water/juice drinks tonight to try. Three months ago we had a nutrition evaluation and she was on the verge of being discharged from the service, because she was doing so much better. This time it was a different story and she will keep her quarterly nutrition evaluations for a while.

KayTar also fell in love with a boy today. His name is Luke. He is very handsome, some might say he is a hero. He is very famous, indeed. She was even spotting giving the handsome young lad a kiss.



More than once...

That's right, it is none other than Luke Skywalker.

BubTar "gave" him to her earlier in the week and they have become fast friends. She doesn't care about most stuffed animals, dolls, or toys of this nature...but Luke is special. Perhaps it is the orange jumpsuit (although I hope not, since that is what the convicts are sporting) because she doesn't not care for the Luke dressed in black.

Also, we bought her this toy for her first Christmas over a year ago, thinking it to be age appropriate. Heh. Today was the first day she's ever worked it. She and Josh were playing in her room and I heard popping and howls of laughter and assumed he was opening the doors and she was getting a kick out of it. After the laughter continued for a bit, I got up to go watch. What I found was Josh, asleep on the floor, and KayTar working the doors on her own, much to her delight. Enjoy!

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Saturday, I'm going to Austin to meet Amalah, Sweetney, and DadGoneMad. This is completely and totally UNLIKE me, seeing that I am very nervous around new people and generally shy away from outwardly social engagements...but I can't resist!! Josh and I are taking a day trip and my parents will watch the kidders. It will be a nice break, I can't remember the last date Josh and I have been on or the last significant time period I've been away from the children in months. I think it will be good. And either way, I'll have lots of photos to show when we get home!

Happy to be Alive

If you don't read Beck you must. Today. Right now. Because she is alive and we are so very glad. Because we all need a reminder of how fleeting life can be and how very blessed we are to be here with our children.


Because the thought of leaving this behind is simply too much.

EEG!

The short and sweet summary of the day:
She is not having seizures! The EEG came back normal. WOOT!

The longer version:
She stayed up last night like a champ! She was laughing and playing up to the moment we tucked her in at midnight. This morning was less joyous, because I am a royal grump that early in the morning and she is, too. We held each other and whined on the couch for a while about how unfair life is, but eventually we got moving. She was a sweetie in the car...no crying, no unauthorized sleeping...just sweet baby girl babbling. We got there and were called in a timely fashion. She sobbed and signed "Help" as I held her down to get her all hooked-up. It was very sad. But then she snuggled up and went to sleep as per the instructions. Ten minutes later and I had to wake her up, and she even took that sportingly. All in all it was really easy. And the pediatrician called us around 5 this evening with the results. Totally normal. They didn't even see the diffuse slowing this time that they saw in August. So, no seizures...or they would have seen some sort of change in her baseline. Whew.

The eye jerking is likely nystagmus, and I don't know why it has started all of a sudden or what it means for KayTar. It is still happening, though.

The eating/drinking situation is still borderline. She was dry from midnight last night until 1:30 this afternoon. Her intake is less than spectacular, despite my best efforts to coerce her into drinking.

Here are a few photos from the PAR-TAY last night...

The fear that does not consume

Speaking of the fear, KayTar has thrown us for a new loop. Aren't you so very excited?? No? Okay, I'm glad we agree on that. Yesterday evening while changing KayTar's diaper, I saw her eyes spontaneously jerk over to the far left. I didn't even know if I really saw it. It happened so quickly.

I said, "Hey Josh, her eyes just went funny."
He said," What do you mean? Did they roll back? How did it look?"
I said, "I don't know, it happened so quickly...it was just odd."

And it happened again. And again. I called Josh to come watch, but by the time he got there, it had stopped happening. We went to his parents' for dinner last night. We were standing in the kitchen and KayTar was crawling through, she stopped to look up at me and her eyes jerked again.

"Josh, her eyes...they did it again."

But the moment had passed. We had a nice evening, and KayTar finally peed (did I forget to mention we were skating a dehydration line yesterday? Oops. She didn't pee from 8pm Sunday night to 2pm Monday afternoon. We're good now, though. I think.) While we were changing her diaper, Josh finally saw it. Then it happened again. And again. After seeing it so many times, we could roughly explain what was happening. It was a sudden jerking to the far left. Nothing else strange was happening. She was very still for the instant it was happening, but besides the eyes, no other strangeness. We saw it again after bath while we were dressing her. It probably happened 15-20 times that we saw throughout the evening yesterday. But I think it happened much more than that, because it is only noticeable when we are looking her straight in the face and she is gazing back in our direction.

This morning the pediatrician called to give me information about the EEG tomorrow and ask if it was still happening. I told her no, because at that point, I hadn't seen any...but since then we have seen it happen several more times. She is still not eating well, and she immediately threw up what we tried to feed her this evening. I don't know if that is related. Otherwise, she is completely herself.

Tomorrow we have an EEG. Tonight we have to keep KayTar up until midnight and wake her at 5 in the morning. The girl likes her sleep, so I don't think she'll be too keen on this. I KNOW I'm not keen on it. Starbucks people. Starbucks. We want answers this time. Big fat answers. I'll settle for a few good clues...but an ANSWER or something definitive would be ideal. So if you have extra good thoughts...or prayers...or anything you'd like to send off for us, we would be so appreciative.

Zen, Shmen...

It has been six months since KayTar's first MRI, and about eight months since we started this crazy journey. Roughly nine months ago, I was standing in a new pediatrician's office with my insides twisted into knots. I has suspected something wasn't right, but to have those concerns validated by a doctor in such a serious manner and hearing mention of evaluations, MRI's, blood work....it was enough to make my heart drop right out of my body and onto the floor with a "Plop." In those days, I was a timid, frightened child. Yes, I was married and I had a four year old at home, but so much of me still had not matured. I was unsure of myself, I had no idea how to speak up for myself or fight for something I believed in. I didn't have a voice. I had never needed one before. I can picture myself standing in that office, clutching my list of concerns while talking to the pediatrician. It seems like it happened years ago. I feel like I have aged ten years since that day, and it has only been months.

Time aside, it was an important catalyst in my life. I had to find my voice, my strength, my ability to fight; and I had to find it fast. I think back to the early months and see myself floundering, panicking, trying to stay afloat. Every moment was overwhelming. I had been thrown into the pool and I didn't know how to swim. I thrashed, gasped, clawed my way up to the top and I would slip back underwater almost immediately...I thought I would never make it. Somehow, I found my way to the surface more often...I was able to catch my breath before slipping under. I slowly learned how to hover at the surface for long periods of time. Soon enough I was swimming! I have no idea how it happened. I spent so much of those early months in full blown panic mode. I cried often. Each episode made me fear for my baby's life...it made me wonder if she would slip away from me altogether. Each test was a threat of terrible news. I lived my life in fear. Recently I've been looking through my archives and I can feel the fear in my words. Some where along the way, I learned to cope, to manage that fear. Episodes are difficult (some more than others), but they are a part of life, like dirty diapers or stomach viruses. We handle them and life goes on. I am still frightened at times, but the fear does not threaten to swallow me whole as it once did. I look forward to the answers the test will provide, although I do not look forward to the tests themselves. I don't dread them any more than an average parent dreads immunizations. Necessary evils. There is still much uncertainty, but I no longer sense impending doom. As difficult as it has been, I've adjusted to this new life...we all have.

I still worry. I am insane about hand washing and sanitizing since realizing KayTar propensity for dehydration and hospitalization due to her particular set of sensory issues. I worry about when and where the next episode might happen. I worry about how intense it will be. I scrutinize her behavior on a daily basis in an attempt to predict an episode before it happens. I worry about those little lesions in her brain and what they are up to. I worry about her calories and whether she is thriving. I have moments, like after the awful episode two weeks ago, where the fear comes flooding in and before I have a chance to think, I'm under water again...but now I know that I can swim to the top. I think so much of this new found strength comes from KayTar and the fact that I watch her thriving day in and day out. She is making great strides, which soothes so many of those nagging worries. I have THIS outlet to help me process things. Before starting this blog, I didn't know how to be this person. I didn't know what to do with these thoughts or feelings. Everything inside of me was completely muddled. The act of putting it all into words and coherent thoughts has forced me to process them. It is how I understand myself...it is how I cope. You all have a part in that, and for that I am infinitely grateful. Life is still far from Zen...but it is infinitely closer than it was just months ago, and every day we get a little bit closer.

Dinner and a show

Tonight we went to dinner at Chili's with our best friends, who happen to have married each other. After dinner, the boys left to go to the gun range (yes, they enjoy this very much) and my friend and I took the kids to Bath and Body Works for a brief shopping trip and then home. One we got home, I bathed KayTar while BubTar and L drew pictures together. After bath, I got both kiddos in to their respective jam-jams and attempted to settle in for an evening of friendly chatter. Unfortunately KayTar had other plans for the evening. One moment she was playing with the hand santizer we had purchased...she was just taking the lid off and was half way through the motion of asking me to squirt some into her hands when she disappeared. Not physically, of course, but rather mentally. Uh-oh.
"KayTar...hey! Pie Pie! Are you there, hon?" *snap, clap*
Her eyes move just a bit...and then lazily roll their way to my face.
L says, "Is she okay?"
I say, "I'm not sure...she might be going into an episode. Great."
I busy myself flicking off light switches, in case the lights are going to affect her, I set her up in the sick seat and put on the Leah's Farm episode of Signing Time. I call Josh to let him know we might have a problem.
He says, "I'll be home soon, go ahead and give her Motrin just in case."
I attempt to give Motrin, as I do, the vomit begins. This isn't an "I don't like medicine" gag and barf...this is a "Here is everything I have eaten all day long" barf. I can see (and worse, SMELL) the layers of the day...cereal for breakfast, spaghetti for lunch, PediaSure, fries she snacked on at Chili's, it is all present and accounted for. L and BubTar are sitting on the couch, he is reading Hop on Pop to her. She sees the vomits and I see her gag a bit.
"L, does vomit bother you? You should probably take BubTar in the next room until I get this wrapped up."
KayTar and I go for bath number two for the evening. L calls Josh to make sure he is headed home. I give KayTar a Tylenol suppository and get her dressed in a t-shirt and dipe and lay her on the couch. She's here and not here. She whines. Coughs a smidgen. Whiiiiiines. The vomit is coming. RUN TO THE BATHROOM WITH THE TODDLER! Score, it makes it into the sink. Again. And again. And again. Once or twice more for good measure. Once she is empty, I take her to her room, turn the lights out and lay her in her crib. She is still and quiet until falling asleep at about 9:30.

She is still sleeping. I hope she sleeps through the night. We are staying up for a while to be sure she won't need us. The episode has actually been one of the easiest for a while now. No pain, no light sensitivity, nothing overtly frightening. It is reassuring after the last one. But I am a bit worried that our friends may never have children after this particular peek into family life. *lol*

In other news, regular EEG is happening this Wednesday. We will be trying to figure out how to catch one of these boogers on EEG between this and the next go round. Obviously, we did not catch this one on a workable day.