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.