Thursday, September 30, 2010


akaiya started having seizures around this time last year. i don't know why, i don't know how, i just don't know.... we've been trying to find meds that will work for her and have not had much success. she started on depakote, then we added phenobarbital, then we added topomax, now we've taken away topomax and added keppra. 20 mL of meds go into this kid twice a day. she went from taking nothing, to being a walking pharmacological experiment. (well, not exactly walking...more like rolling)

because the meds were not working (15 ml depakote per day, 14 ml phenobarbital per day, and 50 mg topomax per day) akaiya's neurologist decided he wanted to do a 48 hour EEG. we arrived at the hospital a little bit before 2 pm on a wednesday. i changed akaiya into her pajamas, layed her on the bed, and she fell asleep right away. we joked that akaiya really loves hospital beds...

well, the lil girl woke up when the technician started putting the leads on her head. she had 29, and they were covered up by 2 packages of gauze bandages. as you can see from the pictures above, she looked like half a mummy, or like an accident victim. as soon as we brought her back to the room she feel asleep again.

she basically stayed asleep for our whole stay.

the next morning her neuro came in with his team. he told me that the results were not good. akaiya is having seizures continuously. the reason she has been so sleepy is not because of the meds (like i thought) but because she has so much electrical activity her brain never gets a chance to fully recuperate. he then asked me what i wanted to do. i don't think it's ever a good sign when the doctor asks you what you want to do. i stared at him in confusion. he brought up that i had said the seizure activity seemed to increase when she started the topomax and said that he could take her off of it, send us home, and see how it goes. he said he wasn't comfortable with that, but if that's what i wanted, he would do it. he said we could keep her on the med, send us home, and see what happens. we talked about why she might be having an increase in seizures and he said that he really didn't know if it was just her condition worsening and this was going to be what it was or if there was something we could do. and then he asked me "ideally, what do you want?" i told him that in an ideal world, i want my daughter to not have seizures at all. he said well, we can try some things and investigate further. i liked that idea. so he took her off of the topomax and added 2.5 ml of keppra. he also had them give her 1 ml of ativan. he wanted to see if the electrical activity could be interrupted. akaiya continued to sleep on...

late that night he came back in and said that the EEG looked a little bit better. he saw some periods when she wasn't having seizures. the nurse that evening informed me that her dosage of phenobarbital had been increased, and that the times the depakote would be given was changed to twice a day instead of 3 times a day. so now she gets 17.5 ml phenobarbital a day, 5 ml keppra, and 15 ml depakote.

the next morning he came in with his team and reiterated his statement, he provided the caveat that "it's not wonderful by any means, but it's better than it was". so with that he felt that we were moving in the right direction. and the decision was made to keep her on the keppra (in addition to the depakote and the phenobarbital). akaiya slept right through it...

her neuro came in the afternoon to check on how she was doing. it was worrying him that she was sleeping so much. i asked if i should try to wake her and i was told no, let her sleep. he decided to keep her hooked up until the next day (saturday). around 11 pm akaiya started to stir a bit, and give some of her noises. she stirred a bit at 2 am as well. at 4 am i got a few smiles and small giggles. she slept lightly, waking for a minute here and there, until the tech came in to unhook her at 2pm. that glue is absolutely awful to try and get out, especially out of hair like kaiya's. she was awake for that for sure! as soon as the "mummy wrap" was removed it was like a switch was turned, all of a sudden akaiya was awake and "talking". she dozed after i tried to clean her head for a second time. as soon as we got into the car to go home she was her loud little self, and she's been pretty perky since then. she has had less sleeping at school, has been more interactive, and is definitely more active at home. she's rolling around more, she even tried to sit up and she hasn't done that in a long time.

her seizures look different and i don't know if she's still having them even when i'm not seeing a definite sign.

back to the i don't know stage...

Monday, September 6, 2010

Happy Birthday to Me

saturday was akaiya's 8th birthday. where the heck has the time gone? 8 years ago my little miracle was born and we were told she wouldn't be with us for very long at all. she had something different in mind though.

it's been a crazy 8 years. this little girl has taught me everything. absolutely everything about all areas of life. it's amazing how much impact one person can have, especially one small person with so many challenges. she affects everyone she meets. i really am proud of this loud little kid of mine.

we did the usual and hung out at nana and papa's place. family surrounded her, kids were giggling, ice cream cake was served, it was a good day.

kaiya has had a difficult year. so much has changed for her. she started having seizures, she's been placed on med after med after med. she spent time in the hospital...she went from being an oral eater to being g-tube fed. she gained 12 lbs in a couple months. she started puberty...we're hoping that the coming year brings some resolutions to the problems of the past year. i guess we should be thankful though. we had 7 years of calm. the princess just decided to make up for that all in one swoop apparently.

the seizures continue to be a problem. kaiya is now taking 3 medications and at this point i'm ready to toss them all out and see what happens. she's shaky, she still has seizures, she's "stoned" acting. she's just not my bright-eyed little monster. the morning of her birthday she woke up in a rare mood. she was extremely alert, happy, playful - just more like herself. she even ate a cup of yogurt by mouth. i put off giving her morning meds b/c i wanted to play with this happy little person for awhile. i gave her the meds and she was knocked out 15 minutes later.