where did my baby go?

i did something the other day i never really thought i would do.

i bought kaiya her first bra.

i know what you're thinking..."this woman must be crazy!" "isn't kaiya only 8 years old?!?!" "what is wrong with her mom???"

well, the lil person is in the early stages of puberty. and she's developing. quickly. i like to use the little cami shirts with the shelf supports...but then i was at old navy and they had these little cotton cami bras so i picked them up. i feel like they kind of flatten her and make her look a little less "curvy".

she is getting some meat on her body too. the last weigh in has her at a whopping 45 lbs. she used to be all skin and bones. i was excited b/c i found some size 6 jeans in a slim. i brought them home and they were too small! the poor girl's belly was squishing all over the top! regular jeans are the way to go these days i guess...

i have added a new nickname to her very long list: fat kid =)

EEG

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...

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.

explosion

we had our first tube "mishap" today. we were in the store shopping for a lightweight stroller that is high enough so that miss kaiya doesn't drag her feet on the ground. i found one i wanted to try out, turned around to take kaiya out of the cart, and saw that her shirt was all wet. i didn't think that she had drooled that much in the minute it took me to get the stroller down so i lifted her shirt to inspect. the cap had come undone on her tube. kaiya had just been given a can of pediasure about 45 minutes before...needless to say it was all over her. i gave myself a minute to have a private freak out session in my head - and then i wheeled her very quickly through the store and out the door. undigested pediasure smells AWFUL. kaiya thought that it was all a big fun game though. oy....

the kiddo isn't really too wild about eating by mouth lately. she's pretty much refusing everything. i don't know if it was because she was constipated, but we took care of that and she's still being a stinker. not making mama a happy camper at all. good thing we have the backup...

heavy

akaiya is getting heavy. i didn't realize how quickly she would gain weight. i don't know if it's good that she's gaining weight this quickly...but there it is. i'm giving her the amount of calories the nutritionist told me to. her doctor hasn't said that he's worried about it. so i guess we'll just keep it up and see where it takes us. i used to just carry her if i was running in to the store for something small, but i felt like she was going to break my arm when i did that yesterday! she has gained 6 pounds in the last 2 weeks. i hope this slows down soon!

other than that she has been her giggly little self. we are getting the button put in on the 26th and i can't wait! this tube is starting to get on my nerves! she is starting to roll around more so i can tell her tummy doesn't hurt like it did. she's also starting to lift her shirt up and explore the "stuff" underneath. i keep that tube under wraps, but i'm sure her curious little hands will figure it out soon enough.

home home home

we were finally able to go home on monday. the docs released us early in the morning, but we had to wait until 7pm to leave b/c home health care had to be set up. it was such torture knowing we were medically okay and ready to go, and all we were waiting for was a pump to be delivered. a little part of me was wondering why the hospital waited until the day we were being released to set this up. they knew we were going to need a pump, why not get things going before release. i was especially cranky when i found out that the social worker hadn't even ordered anything until 5pm, and that's when she learned about the 8 hour turn around...yikes. luckily my insurance company acted faster than they thought, and we got the pump at 6:30. it's a kangaroo joey, and so far i like it. it's small and pretty easy to use. kaiya has been such a trouper. she's more awake, more alert, just more "there" than she has been in a LONG time. she thinks everything is hilarious, and just sits around with a sly little smile on her face. she's actually making me regret not getting the g-tube sooner. has she been a little out of it b/c she was always a bit undernourished or dehydrated? she was gaining weight...but maybe she just wasn't getting the right kind of nutrients? i don't know, and will probably drive myself crazy thinking about it. we are using the tube for supplemental feeds. she isn't taking too much by mouth just yet, but she's working her way back up. i actually did my first gravity feed today while she was sleeping. how convenient is that? she gets to rest, and i can still give her the calories she needs.

so far so good???

feeds were started last night at 6:30 pm. we started with pedialyte and once we realized she was tolerating that moved to pediasure at 12:30 am. she has been on continuous feeds of 45 cc's per hour since then and so far so good. she seemed to be in pain last night at around 2 am, but i think that it's her iv bugging her not her belly so much. she had been laying on the side where the iv is and she started crying when she turned over. it looks kind of red and puffy to me, but supposedly it's still flushing so it's good. i just want it out b/c iv's in the neck scare me! we gave her tylenol and she went back to sleep pretty quickly. a surgical resident visited us this morning and said that everything looks good. she didn't change the dressing, which i thought was odd...but she said that someone (a nurse i'm assuming?) would do that later. she said that as far as she is concerned, once we get to goal feeds we can go home. the g-tube is for supplemental use only so does that mean we're there? her pediatrician isn't going to let us go till tomorrow anyway so i guess i'll just have to give up on my dreams of sleeping in my own bed till later. kaiya seems to like the bed here though. it might be time for mama to give in and get her a new bed. one that she actually fits in =) my next job is to start figuring out where the heck i get all the supplies for this new adventure we're on. i don't know if the hospital gives us a pump or if i should be making calls to my insurance company about what to use...or if i even need one? some people use gravity right? i need one of these nurses or docs to come in and let me know what the heck to do!