every time i write its been forever and ever, i have to admit that i am struggling right now. with everything. work, life the child/baby who actually is called a toddler now. its just hard. like i think its so hard right now my bones are aching because of it. and in all reality it shouldnt feel this hard. i am not doing anything extraordinary. i just going through life my life to be exact. its not like annika hasnt had seizures for most of it so this should be new. i should eb able to deal and i cant. i cant sleep. i CAN eat. i dont wanna move. its hard for me to get excited. blech.
anyways we had the week leeg and it was hard and horrific and we discovered we can never ever ever give my daughter adevan again. but in the end she got a new tinker bell constume and i got some more vague answers about focal points andmore testing. anyways its been a long time so we had more testing to look for a possible focal point they could remove and then my daughter could lead a new life seizure free. in the meantime we have continued to increase her lamictal until we get to the correct goal dose ( which starts this weds). the dr took her off the keppra and the dilatin and decreased her zonegran because the levels were too high.
we had a pet scan and mri under anesthesia done for her. results all cam e back normal. whew you say. normals good right.
FUCK NO. normal is not good right now right now i want more than a vague diagnosis of genrealized seizure disorder to calm my fucking nerves. i want something a tumor, a focal point. i want a dr. to look at her various scans and say THERE right THERE thats where it all starts and if we take it out all will be well.
anyways i spoke with our dr last week about the normal pet scan hurrah and at the time we hadnt seen any seizures for 3 weeks. that is soooo awesome. well so the very next night. the very next night I WENT TO CHECK IN ON HER AND SHE WAS FREAKING SEIZING. WITH NO NOISE. she immediately fell back asleep. then yesterday she had another one. THAT TOALLY SCREWS UP ALL OUR DATA. what if this whole time she has been seizing at night and we didnt know. what if she ends up having one of those at night seizures that kills children. DUDE?!?!?!?!?!? how do we deal with this shit. how is any normal rational person supposed to move ahead with their lives if all they can think about is the possibility of it all ending. or at least how am i supposed to sleep.i fell like every time i am not in the room she might be seizing.


on the up side my daughter is potty training well. and we may have her out of diapers during the day by the end of summer. she seems pretty keen on the toilet. and pooping/farting/peing into it. she is in pullups during the day and diapers at night. so there is that. and goddamn if she doesnt get cuter by the day.
i love her so much its ridiculus.

absent

so it has been a while since my last post (again) but right now i am in the family room at swedish hospital and medical center. hanging out during my daughter's week long video eeg stay. the doctor has asked we keep her here until friday ro saturday so they may get as much data as possible. we have been weaning her off meds as well to get some seizures. i hope this helps us get some answers.
I have to say though that i am unimpressed with the facility in general the staff is rude they act like i am a high maintanence mom for no reason, and they treat me like i dont know anything. i am cleaning up everything, even changing the sheets. no offered to help us give annika a sponge bath so we did it ourselves. i asked them to re-tape something because the tape was getting loose and sticking up and annika was picking at it and they did it with attitude. first asking why i thought it was nesescary and then huffing through it. i am tired of this treatment. i am a mom doing my best formy daughter and i am being treated like an abusive parent from some backwoods town who doesnt know anything.

arrrrgh

ugh

despite Sassy's best attempt to make me feel like less of a tard. (sorry i am not feeling pc today) i fucked up big time (also excuse my language) i left annika pill seperater, daily thingum where apparently she could reach (who knew my daughter was this talented) and she got some extra pills last night. not very many. but she did. i called the poison control, and i called the er and was told she would be fine, just to make sure she was ok at 2 hours and 4 hours post ingestion.
she slept with me.
i just couldnt let her be alone because i could not let go that i almost let my kid kill herself like a big giant reject of a mom who should not be trusted alone. its like the time she started to roll, and i had her on my bed and she pushed with her arms rolled, hit the bedside table and landed on the floor on her face. i felt really crappy then too. i know i am technically speaking a good mom. i love my baby with everything i got. but seriously how on earth could i have let this happen.
arrrrrrgh. i know what people are gonna say etc. but its gonna take a while to get over this "learning" experience.

doctors appointment

ANNIKA HAD A 3 MONTH recheck yesterday with her neurologist. and the neurologist says that since she has done so well and the dilantin seems to be doing its job. we can take her off the Keppra. she is getting 3.6mls twice daily now but starting today she will be on 3mls twice daily for 1 week, then 2.5, then 2, then 1 then 0 yay. for no keppra. also in good news my husband has bee up in the icy straights in alaska for a week turning circles until they could go through the gulf to get to whittier. 1 whole week he turned circles, and now they are on there way. hopefully he wont have to turn circles on the way home but it is possible. anyways. also my sister in law got a new job at the victoria clipper, a job i think she will be much happier at and things will go really well for her. i am so proud of her. yays.
anyhoo good news all around todya.

i fail

so yesterday at 11pm i put the side back on and made annika's bed a crib again. i am pretty upset. i wanted to prve to all the people who thought it was too early wrong. but i fail. last night was a bad bad night and it was frustrating and just shit. so after annika refused to eat and threw her plate of food on the ground 2 times, after her bath, i put her to bed. now while she was bathing i installed a fancy baby gate in front of her door to prevent her from escaping in the morning. we did the whole up and down thing several times, and finally i just closed the baby gat e and walked away. my bad, she hung her arms over the gate and screamed like i was beating her. i swear to god. so i calmed her down, kissed her goodnight put her back to bed, and the little beast thought we were playing, she was out of the bed before i even left the room. so up and down and up and down and up and down until 11 when i put the bed back to a crib and then still 45 mins of screaming. luckily i was exhausted and could sorta sleep throght it. (you see she woke up at 4:30 am yesterday) i think she is getting her 2 year old molars and i dont know how long it takes to get those suckers to pop out but i wish it was faster. i wish she would stop being so contrary but most of all i wish that these episodes of torture wouldnt make me feel like such a bad parent. like i know that i am a good mom. but sometimmes things like this happen and i feel horrible. lke maybe if i had just waited to take her bed apart, or any numb er of things that would make me a "better" parent. anyways of course she is being a little angel for gran today.
i think i am going to call in sick to work i dont wanna getup in the morning.
blech.

a quick addition

i said that i think her jaunts out of bed are hilariously frustrating. but they are mostly hilarious becaus ehse has such joy at her escape each time. little pistol that she is. nd i realized this is what i want for her. no fear, confidence, happiness and this is what i have provided. yay

mistake?

so i feel like annika is growing into a big girl and she deserves to be treated thus. i changed all her straw cups to sippy cups, i let her pick some of her own clothes, we "sing" the ABC's etc. so last night i made a huge leap. i lept into changing her crib to a toddler bed.
maybe to big a leap. she figured out that she could get out of bed, which is common so no problems there, but the testing of my Patience was hilariously frustrating. 9pm is her bed time so i tucked her in gave a big kiss and said goodnight. i turned out the light, shut the door and walked away. about 1minute later i hear the stomping of little feet, the door opens and out runs annika with the biggest grin. like she thought it was so marvelous she could get out of bed. i calmly told her that it was time for bed and put her back. 2 more times this happens where i actually say good night. then for another hour it is back and forth without me saying a word. and her grinning like a little demon child. it was soooooooo funny, at one point i walked into my room to see if she would wander back to bed, no go, she just wandered saying momma? and then tried to let the dogs in. i swear a couple of times i started coughing because i was trying so hard not to laugh at all of this. there was no crying no screaming just an excited little girl who figured something new out.
anyways she finally fell asleep about 10pm. and i had a good laugh.
we'll see how things go tonight. ; )

cuz you gotta have faith ?

faith has suddenly become an interesting issue in life lately. i became a catholic 5 years ago this Easter. i went through a rigorous class lasting 1.5 years, then got baptised at Easter vigil. my faith has been fairly strong and while i might not be the most consistent churchgoer i really believe. i believe that god is watching and while it is not his job to intervene he is there and he cares and he shares in our collective misery/happiness/hope etc. more importantly god believes in us. it may be hard for him but i think he believes that the human race will survive and we will become better. there are a lot of pitfalls but it is no longer gods job to start over. i mean how many plagues, floods, pillars of salt can a god command before he says you have to do it yourself. like a parent who eventually cant bail their kid out of jail anymore. the parent who has to let their little one make their own mistakes, then fix them. i strongly believe that after god';s ultimate sacrifice, a son an actual human life who took on all of our sins and problems and shouldered them so he could pay the penance for us. i think god has a right to say your turn.
anyways. up until this point i have felt very strongly that god had faith in me like i have faith in him/her. i felt like i could pray to him and while he may not be able to do anything he would listen. but lately my faith in god's faith in me has been diminishing. or maybe it is my faith in myself. i am no longer confident that god is listening. i don't expect god to fix things for me. but i used to feel god, i used to feel that presence. is it gone because maybe i don't believe anymore. or is it gone because i have allowed myself to become so wrapped up in everyone and everything else i can no longer feel it. i don't know. i mean you hear about the people who have sick children who go one of 2 ways. extreme religious belief, zealots etc. even if their child dies it is gods will and his mercy etc etc. then there are those who believe god is punishing them and don't feel there is a justification for the punishment so they get angry and forsake god. yet still blame him for their child's death or whatever. that's all fine whatever helps you cope right.
but what about the in betweeners. the people who still have faith and don't feel like any of this is gods will/fault. but feel like it is what it is and are questioning their faith not because they don't have any but because it is less. or it is no longer enough to sustain them. what happens then.

professional help.

i am gonna talk about me for a minute. or however long it takes you to read this.

I have a problem. i involve myself in other people's issues and then feel sorta obligated to finish/follow through with them . I mean it is hard for me to weatch things happen to my friends and not want to help. but then i get too involved, end up getting upset by the whole thing, and feel like i need to stop. but then i ask about it again. arrrgh its a sickness. i feel compelled to ask to make sure things are ok to help out as much as possible even if it means i am gonna go crazy.maybe its some weird sort of white knight/narscissitic (sp?) syndrom. maybe subconciously i offer my help because then i know people will think i am a good person which in turn makes me not such a good person
thinking about all of this gives me a headache.
i feel like in order to show that i love someone i have to be there for them as much as possible. even if it means slogging through shit i shouldnt be slogging through. i like to make dinners and desserts, plan for birthdays and even occasionally (actually very rarely) help clean house. but then because i am kinda nuts i get upset that there isnt someone there to take care of me the way i take care of other people. for clarification purposes i do not expect people to take care of me the same way but sometimes i hope there is someone out there who wants to comfort me in the same ways i like to comfort other people.
i give myself a headache , and re reading this makes me positive i need some professional help. luckily i am going to get that.
anyhoo... i will stop chattering about me and eventually write about my loverly daughter.

tra la la. no seizures for a few days now. it has only taken 4 meds but here we are happily seizure free for once. I know that i dont really have it so bad i mean she could still be having uncontrollable seizures still. she could be brain damaged, she could be dead.
sometimes i feel so selfish for feeling sorry for myself a little. I mean annika is the one with the seizures, and again other people have it worse. but its soooo frustrating talking to doctors, and dealing with new meds, having to explain everything 20 million times just to make sure all the right people know how to medicate and take care of my girl. i know it goes without saying but i love her so much and if anything happened i would totally blame myself even if i wasnt around. we were watching csi last night with papa, and these people had a daughter who died accidentely while with aq babysitter, the babysitter had a baby and they adopted it but the mom hated the kid because she reminded her of the woman who killed her first baby that she killed her second daughter.
weird.
i wouldnt be able to replace my annika. she laughs at her farts, eats her boogers, hugs me when i ask, like to look at the world upside down, and knows without a doubt that she is hot shit. its awesome.
well that is all for now.

i digress

so i have been busy this last week (what else is new) but I want to share something.
one of my best freinds B had her baby this week, and she had almost the same labor that i did, epidural wore off, ended in a c section after 24 hours..... anyways. so now she has this beautiful baby boy. but while i was at the hospital watching her breath through the pain i realized how very tribal giving birth can be. the people you trust are there, sometimes your parents, certainly your SO your friends if theya re part of your chosen tribe. and that frankly there is no man out there who actually can understand what it is like to try to push a kid out at 3 am and why you have chosen to surround yourself with the strength of your tribe. its pretty awesome i think. i wonder if now the baby will some how through osmosis or something develope trait of mine or T's that were wandering around hism other's hosptial room.
anyways. that is all for today. i am not ready to discuss the newest developments of annika sooo i will talk later when i am ready.

jeez

seriously though i keep losing track of time. this week has been crazy. I am also sick soooo.... luckily anni is not (yet) I hope she doesnt get sick, because usually she will have a lot more seizures...
last we talked i was mentioning how much it bothers me to p[ut her on the dilantin. well 2 weeks ago tomm. we stazrted dilantin at 25mg twice daily she had a seizure every single day and 2 on weds/sat then last tues she stopped, we contacted the dr. on monday but no return call un til weds, then we had to have blood drawn, and the dr said her dilantin levels were really low so we increased to 50 mg twice daily. we started that on friday. she had 1 seizure yesterday ( shouldnt her meds stop the seizures)
so you may be wondering why i am allowing the dilantin increase when i was soooo opposed last week.
well we went to get a second opinion. at swedish medical center, instead of children's. the dr who seems very nice (but not very personable, not really engaging) very very smart i think. anyways she wants to do another test before we change anything, we need to do what is called a video eeg. basically my child will be admitted to the hospital and hooked up to an eeg machine, then they will put a camera in the room and when she has a seizure there will be the eeg as well as video of what her seizures look like, how she reacts, and how she recovers. then dr #2 will make a diagnosis. soooo no real second opinion until testing is done. and the earliest we can get in is 4/13./ the dr said it could take between 1 and 5 days, and since kjell is going back on the boat i have to take a week off of work for it, because i have to be there 24hrs a day to help monitor her. gran will help releive me etc. but who can really leave their child in the hopsital without them.
anyways.
later

goodness how the time flies.

I said i would try to write every day but the truth is i cannot always get to a computer to write every day. actually part of it is where our computer is located and the thought of sitting in the office looking at the litter boxes, which are inevitably dirty makes me want to pull out my hair and it gives me anxiety so i choose not to go in there.

anyways.
Annika was started on keppra, then we had to keep going up and up on the dosage, she is now at her max which is 360mg twice daily. she has had a cat scan, an mri, multiple lab tests including a dna test for some sodium channel mutation. also 2 eegs. the first eeg was normal, the second was not. i was told that a lot of epilepsy will show up in only one part of the brain when a seizure is happening ( on the eeg) but annika is firing everywhere. all her little brain bits have the electric currents that make up her seizures. which makes them complicated. also she is always ALWAYS concious and aware of what is happening. she doesnt have the after effects of a seizure, she just gets up and goes back to what she is doing. some times they are only partial seizures, sometimes full seizures. i dont think they can be classified as "grand mal" (big bad) but they arent "petite mal" (little bad) either. she started zonegran and maxed out on that as well. turns out she is actually a little high so they had to decrease her. this whole time 1+ year she has been having seizures. there hasnt been a time where her seizures ever stopped completely.
which brings me to now. they started her on DILANTIN last week. i am not happy. i was told they just want her seizures to stop before they go further. but really. I dont like this drug, i dont like what it could do to my daughter, i dont like what it is doing to my head. i keep thinking that in the middle of the night she is going to have a static epilepticus episode and die while i am sleeping. argh. so i am not sleeping well. also i was pms'ing and totally unreasonable last week. i am a mess. my daughter however seems sort of unfazed aside friom the being tired/being restless, the grumps (which could be a terrible 2 thing), and her waning appetite.
well more later.

today

i am fast forwarding through the history (just for today folks) to talk about the present. as a matter of fact today, and this week in general. I am a mom, who works full time, whose husband also works full time........on a boat, in alaska usually, for 2 weeks at a time. he is not a fisherman, not in any outright danger, i dont really worry about him at work. anyways it seems that for a lot of people that should be a very full if not overflowing straw that broke the camel's back sort of plate. I have incredible support, some very best friends in the whole wide world and my family in laws. especially my mther in law (hereafter reffered to at mil) mil takes care of annika, she loves her almost as much as my husband and i do. she would do anything for that kid. she has been to al of her neurology appts because my husband cant go, she asks excellent questions, and generally she supports the decisions my hsband and i make.
i work at a veterinary clinic i am the boarding manager. it is usually a good balance of ease and stress i have lots of projects and also a lot of down time. today was freakin ridiculous though seriously.
i started at 7 am and left at 8 pm. i got a lunch for an hour. i had an interview for a prospective new employee my management decided we didnt need after she left. i had to give tours today to a half billion crazy cat people, i had to supervise my new employee (it is only her second day), then my old employee got injured and had to leave early, i also had to put my license to work and be a technician as needed, i had about 3-4 memos to write up, get proofed and finish for a meeting tommorrow. since my employee had to leave early i had to finish out the day in the boarding area doing her job as well. and all i could think of was " i wonder if my daughter has had an allergic reaction to the dilantin we started yesterday, i hope she is ok," i know that is how any parent would react but seriously what the hell like i dont have enough personal stuff to worry about i have all this shit piled on work.
i think my bosses got the idea that i am at a breaking point and let me kinda be a little loopy/punchy/sassy today.
anyways i am home now, i got to talk to my "carol" (you know who you are.) and cuddle my daughter who is fine except for some twitching in the legs.
i feel better
thankyou for your time.

and so.....

So my loverly daughter was born. we enjoyed our summer with her, she was growing, developing normally etc. she is sooooo cute.
she was born with a hemangioma on the back of her head, which is just like a little strawberry thing that grew to a certain size, stopped and is now shrinking.
In October of 07 My mother took her to the store and she had a seizure like episode. we also noticed a new hemangioma starting by her right ear. we went to the Doctor and she referred us to children's neurology. Annika had an eeg in november. it was normal so we didnt get a call or anything and no appt was made. then on 12/30 she got a fever and started having more seizures, 4-5 an hour. we went to children's emergency and discovered she had an ear infection and the fever can lower her threshold and makes her have more seizures. we saw 4 doctors and were there for 12 hours. she had a ct scan, blood and urine taken. Annika was NOT a happy baby.

we did not see a neurologist for a regular appt until march of 08 almost 6 months after her inital seizure.
at that time she was started on keppra; a small dose, we were to schedule a 3 month check and call if any problems.
of course there were still problems.

disclaimer

umm for those of you reading my first post and scratching your heads a little. i tend to write like i talk. without capitalization or any sort of punctuation. also sometimes i type slower than my brain thinks soooooooo if things seem random i am sorry. i am not a good editor ( i would just junk the whole thing) so you will get what i serve. if this is irritating to you then by all means feel free to read something else.

Beginnings

I am Annika Elaine's Mother. mama is what she calls me right now (i am hoping for mommy soon) My daughter was born in june of 2007. she was unplanned/planned. we had stopped birth control a long time previously in the hopes that whatever happened happened. in may of '06 I was diagnosed with pcos and told that we should start trying. so mama and dada started "trying" i am really bad at schedules and checking my temperature and remmbering if i am ovulating or pms'ing etc. so our "trying" was more of the same whatever happens stuff. My husband and i have been married for 4 years now, together for 10. we have had our ups and downs like any other couple. we had just come out of a down and were headed back up. My husband got a job on a tugboat and after his first 2 week trip away we made annika, quite by accident.
i found out about 5weeks and 4 ept's later. I finally accepted it on my lunch break during work one day. I wasnt terribly thrilled either.
i mean my husband and i had just started getting back into a good place, he had just started a new job which required at least 260 days of travel a year. i wasnt ready to gain more weight, and i wasnt sure i was ready to stop taking care of only me. it took a while to really enjoy it. I told my husband while he was on the boat. HE was Very excited for us. which helped me out a lot. i told my friends, who were very happy but possibly found it disarming that i was not overjoyed yet. ( i am not sure) I went to my dr's appts took my vitamins, ate the right food and genreally followed the rules. no delicious cheese that is blue and stinky or runny and stinking with a rind, 1 glass of wine after 1st trimester, <6oz of fish a week (not a hard one for me), snack, dont gain too much weight. all my ultrasounds were normal and aside from some illnesses throughout (the flu, pneumonia) everything went well.
then on june 7th 2007 i went in to have my daughter. i think actual labor started at 10 am i didnt have her until 9am on the 8th. i pushed for 3 hours, had a c section, which i had to go under full anesthetic for, and had my little girl. we knew she was coming out a girl so we had name picked out Annika Elaine. Annika because that is the only name my husband liked, and elaine after my grandmother. and except for her feet (which i have learned to deal with because on a baby they are so cute) i love every little inch of her. and that is how she came to be.
the purpose of this blog is for me to be able to write and figure things out, my daughter has epilepsy and it is still not controlled, and suddenly i am having trouble dealing with it. so i will write about it. blog about whatever, i will excorsise my demons via the web. i hope that whatever comes of this helps, makes you laugh, gives you information, or just a common thread in the universe.