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. ; )