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.