shopping

kaiya came with me to do some grocery shopping today. it has been awhile since she & i did a solo trip because she's getting kind of big to sit in the shopping cart, and i can't push a cart and a stroller at the same time. but we both needed to get out of the house today so off we went to food 4 less. this store isn't the closest too us, but i like to go in there sometimes because they have some things you just can't get anywhere else. apparently this is where all the friendly people shop too. so many people stopped to tell me how pretty kaiya is, and to say hi to her. it was almost a little odd how many people approached us. but it was nice for other people to actually acknowledge the little noise maker instead of just staring out of the corner of their eyes. kaiya of course loved the attention! we might have to make that our normal store =)

petite to plus size

i have really got to work on posting here more often. i come and read the blogs of other kiddos and i tell myself i should update akaiya's, but somehow i always get distracted and tell myself i'll do it tomorrow. well, school is out, kaiya and i are both footloose and fancy free at the moment, and i don't have anymore excuses so here we are.

i guess the reason for not posting is that i don't really feel like much is changing.

but we have a few new things going on. we live in a different house. it's big enough to hold all of our stuff! we live with a great guy that has taken both of us into his heart. it's amazing to see a man that is not biologically connected to akaiya acting like a father. and a darn good one at that. i don't know how we found him, but he's amazing so we're definitely keeping him!!!

akaiya finally got her new wheelchair! it's AWESOME! she sits so well, and looks so comfortable in this chair. plus it's a pretty sweet lookin' ride! the seat and backrest are black where she sits, with silver snakeskin on the back. her name is stitched on the backrest in silver thread. the frame of the chair is opalescent white and the coolest part is that it GLOWS IN THE DARK! you would think that it was my chair with how excited i am about it...





as you can see, the foot rests are a little on the large side. they were supposed to have someone come out and change those out within 7-10 days. we have not heard anything yet - fairly typical...

the biggest change we've had over the past year is akaiya's size. she has doubled herself. depending on where she's being weighed, she's between 51-55 pounds. it's crazy to even think about how much she has grown. she has rolls now. and she jiggles. when i pick her up she's squishy. and VERY heavy...

the thing that hasn't changed is the frustration with her seizure condition. she is still on a lot of meds. she still has seizures. we switch meds. she still has seizures. so there is one more med that we are going to try, and then the next step will most likely be the ketogenic diet. unless another med comes up that he wants to try instead. i think her doc is nervous to put a kid that has issues with growing onto a restrictive diet.

we are VERY excited that it is almost july which means it's time for the SOFT Conference! yay! it's being held very close to where we live which is super convenient, at the hospital that akaiya stays at when she's having issues. SOFT is trying something new this year, and introducing a fundraising event called the Stroll for Hope. akaiya is doing her best to try and raise funds for the SOFT organization and would appreciate it if you wanted to visit her page!

Stroll for Hope - Akaiya's Page

we're still here

i was reminded awhile back that i have been neglecting akaiya's blog. i visit akaiya's friends blogs, but i haven't visited hers in awhile and wow....it's been a long time since i've written an update. life really does get in the way if you let it.



akaiya is getting fat.



it doesn't sound like a nice thing to say, but it is what it is. she has cottage cheese on her legs and multiple belly rolls. we went from rubber bands at the sides of her pants and needing slim fit jeans to wearing regular pants. everything is growing...it's a little overwhelming. i was used to her clothes lasting a year or more, now we're replacing items every couple of months. how people with typically developing children manage this i will never know!



akaiya still has seizures.



she is now on 4 medications. it's crazy to think of the amount of medicine i put into her belly each day. how can she get this much medication and still have seizures? what are they doing to her little brain? we've been dealing with this issue for about a year & a half now and i still feel like i don't really understand the how/what/where/why of the neurological part of her condition. the neurologist can't really make a prediction but he has mentioned that it may be the degenerative part of her diagnosis. try keeping a brave face on when you get that handed to you in a room full of doctors, nurses, and med students...



akaiya is a sleepy kiddo most of the time, but when she is awake she is still as charming as ever.

weird as it is, i almost think of her as two different kids. the kaiya before seizures and the kaiya after seizures. the kaiya before seizures laughed all day long. she was loud and busy. she was a tiny lil sass-a-frass that loved to interact with everyone and demanded your undivided attention at all times. she liked to be held, but not too close - she was a wiggly thing that wanted to be constantly tickled, jiggled, and bounced.

the kaiya after seizures sleeps. all the time. when she's awake she likes to snuggle. she will willingly fall asleep in my arms. she still giggles, she still loves people, she's even still sassy at times (although she's not so tiny anymore...). when she's awake she can still be loud. we don't hear it a lot anymore though. mostly i hear her snores.

i miss the kaiya before seizures.
i worry about the kaiya after seizures.

hair cut

we've been trying to grow kaiya's hair out. the thought was that if it got to a certain length it might actually weigh itself down and hang nicely... this didn't seem to be working at all. her fro just kept getting bigger and bigger and crazier. she hates having her head touched, so imagine trying to comb through this big mop of curls after she's been rolling around on the floor or in her bed. not fun for either of us. so nana finally gave in and was willing to cut it. kaiya was not too pleased with the process and shook her lil head no every time we told her to sit still. such a sassy little monster!

ketogenic diet

akaiya had a check up with her neurologist the other day. my parents brought her b/c i had parent teacher conferences and couldn't take the day off of work. they had a lot of information to take in that's for sure! she is still having seizures. they seem to increase the more constipated she is - i don't know why this is. he is not happy with her continued activity and he wants to try a ketogenic diet. from the internet searches i've done it looks like the "starvation diet" works with 1/3 of all children. i have mixed feelings about this...first and foremost is the concern that she has had issues putting and keeping weight on all her life, now we're going to put her on the atkins diet and hope that we can keep it balanced enough so that she doesn't lose too much. also, this is going to take away the small amount of food we've been able to feed her by mouth. kaiya is not a willing oral eater these days, but what she is willing to eat has carbs in it. no carbs allowed...if it takes away the seizures then i'm all for it, but i'm hoping it doesn't damage something else in the process. the diet can only be started and administered by a trained dietician in a hospital. apparently these are hard to find. the university of chicago doesn't even have one. so we might have to expand our list of hospitals. kaiya is going to be familiar with all of the lovely facilities we have in our fine city at this rate. in the mean time, her dosage of keppra has been increased to try and wake her up a bit. it hasn't worked so far, but we're not at the dosage he wants her at. we have to work our way up to that.
while they were there he also decided that he wanted her to start clinical physical therapy. so now we're calling around trying to find a place that has after school spots open - which is about like finding a needle in a haystack for sure...
her g-tube site has been looking really icky lately and he agreed so he prescribed a cream for it. it worked almost immediately and her site is looking a lot better than it has.

halloween

i had major creative blockage this year when trying to figure out what akaiya was going to be for halloween. usually i start planning months in advance b/c it is one of my favorite holidays. this year i just couldn't come up with anything that really got me excited. then as i was looking thru some pictures i came across this one:

this is me when i was in kindergarten. 28 years ago. 4 years old...

well, the picture got me to thinking, how cool would it be for kaiya to be grapes just like her mom? and of course, we still have the exact costume that i wore. some things are worth keeping forever =) so here is kaiya in the same costume that her mommy wore way back when.

she didn't seem nearly as excited as we were to have her wear it...

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!

the morning after

the kiddo had kind of a rough night. her heart rate was high and her oxygen saturation was low. she was put on oxygen and her sats still didn't get above 94 until this morning. the resident thought that her heart rate might be high because she hadn't had anything to eat or drink so she might be getting a bit dehydrated even though she has iv fluids. she bumped up her fluid rate and that brought her heart rate down a little. she stayed around 130-135 all night long. she is now sitting around 110. her usual is high 60s low 70s so this is still high for her. she started to cough at one point in the night and her heart rate went from 140 to 60 really fast. she lost all the color in her face. the nurse and i tried repositioning her and her heart rate came up a bit. she then started crying and her heart rate shot up to 185-190. so she was given morphine. she has some gunk in her throat that she can't quite cough up and of course she's being a stinker about getting it suctioned out. i don't know if that is what is affecting her oxygen sats or not. they put her on room air at around 8 am and she's still not getting much above 96. they did a blood draw this morning b/c she looks pretty pale. i haven't heard the results of that yet. a surgical resident came in and checked her out. he said that they would start feeds tonight. and as long as she tolerated them she could go home tomorrow. her pediatrician walked in 5 minutes later (with a surgical med student) and checked her over. he said that they would start feeds very slowly tonight and see how she responded. he doesn't see her going home any time before monday. do these people talk to each other?!? he listened to her belly and he didn't hear any bowel sounds. the nurse said the same thing earlier. kind of worrying...maybe they aren't hearing anything b/c she hasn't had anything?

i just feel so bad for her. when she wakes up she looks at me like "mama what the heck is going on here?!?!?!?" her eyes are all big and shocked. then she drifts back off to sleep. i hope she starts to perk up later. it's hard to know that she might be in pain and not be able to tell us =(

and then....

well, the g-tube procedure has finally been done. the scheduling got screwed up so we didn't do it wednesday. we were told we were going in thursday morning and that didn't happen. we finally were taken down thursday at around 4. they absolutely tortured kaiya trying to get an iv. three people were poking her at one time. it was awful. it always aggravates me when doctors that probably do 1 or 2 iv sticks a year grab my kid's arm and think that they are going to be the one that is going to work a miracle. she's an almost impossible stick - leave it to the professional pokers please! so the anesthesiologist finally called everyone off and said that he was going to use her jugular. i looked at him like he was insane, but i realized that it was the only place left - so i agreed with him. he got it right away and put some medicine in to calm her down. (why she wasn't given a bit of sedative beforehand i don't know...) so i was ushered out to the waiting room. 15 minutes later here comes the gi doc. he wasn't able to do the procedure...what?!?!? apparently miss kaiya's stomach is not in the typical position. it's up high in her ribcage. so we had to be referred to a surgeon to get the g-tube placed. instead of having the tube placed the easy way, kaiya was going to need an incision. i really really really wanted them to remove the iv in her jugular. i made quite a stink about it - and was denied. instead they pacified me by getting a "sitter" for our room. a girl sat next to kaiya's bed the whole night and made sure she didn't try to tear out the iv. the spot it is in occludes if she turns her head the wrong way so the girl also had to reposition her every time the alarm went off indicating an occlusion. ugh. so much fun trying to sleep with a stranger watching you.

we were told we would be going down for surgery in the morning. then we were told we would be going down at 2. they finally picked us up at 4. of course kaiya hasn't been able to eat anything for 2 days now because you can't eat when you're going to have surgery...mama was not a happy lady to say the least. they knew too b/c we were getting checked on by everyone all day long. so we were taken to the holding area and the anesthesiologist came out to talk to us. she was very concerned that kaiya still had a little cough. she almost cancelled the procedure b/c of it. but, in the end she decided to go for it. kaiya was taken back at around 5. the doctor was out talking to us by 5:30. he said the procedure went as planned and she did well. for some reason i was not taken back to recovery until 6. she gave me a few drunken smiles and went back to sleep. we left recovery at about 6:20 and she was snug as a bug back in her bed in her room by 6:30. at about 8 pm her oxygen saturation started dipping. she was hanging out in the 85 range and looked like breathing was difficult. we suctioned her and put her on some oxygen. she still isn't back at 100 like she was - she's sitting at around 92 or 93. but she has had anesthesia, pain medication, and seizure medication. plus she sounds like she has a lot of secretions going on. i'm a little concerned about her heart rate as well. she usually hangs out in the 60's at rest and if she is excited it goes into the high 70s or low 80s. right now it's up at 150. pretty high for this lil munchkin. the doc is supposed to come in and check her out again. we'll see what's up with this girl.

a lot has been going on since i last updated! kaiya was released from the hospital may 19th without any real idea of why she was refusing to eat. she went home hungrier than ever and was eating everything in sight for awhile. she left the hospital at 32 lbs and at her doctor appt 6 days later was already up to 36 lbs. we thought she was on her way back to her normal self. then on the last day of school she woke up with a cough (june 4th). she seemed sleepier, but it made sense with an oncoming cold. i let her rest, and the cough got worse. she sounded really congested and miserable, she wasn't eating, but she was drinking still. mommy started to feel the cold as well so i figured we were both just coming down with something. my throat felt like i swallowed glass so i could understand why she wasn't eating if she was feeling the same way. the week went on and her congestion seemed to be going away, she coughed less, but she wasn't improving with eating - she was actually eating less. so mommy finally conceded and made an appointment with the pediatrician for friday. we went in and she said kaiya's lungs sounded clear, there weren't any signs of infection in her ears or throat. she sent us for a blood test to check akaiya's seizure med levels since she was so sleepy. well, the blood test showed a really low platelet count. it was decided that she needed to be admitted to the hospital. i figured we were going to be admitted b/c kaiya had barely drank anything and had not eaten for a couple days, the whole platelet thing threw me off though. so we get to our room and i let them know that kaiya is a really hard stick so they needed to send in the professionals...10 sticks and 5 specialty teams later it was decided that an ng tube should be placed to hydrate her and they would look for an iv spot the next day if it was necessary. well, kaiya's mom is a klutz and ended up pulling out the ng tube the next morning b/c the tape got stuck to my arm...ugh. so they decided to try for an iv again. boo. we had a really great nurse come in and she was able to get a vein on the first try. unfortunately it was in kaiya's wrist. very painful spot. so we seemed to be in a bit of limbo b/c akaiya still wasn't eating, she was very sleepy, and no one could figure out why. kaiya then started having episodes where she seemed to be in a lot of pain. this kid is not usually a crier and she would flinch and start screaming. the docs were brought in to try and figure it out - and because they don't really know her they figured the crying was typical for a kid that was in the hospital. how is it typical for a kid to be laughing one minute and screaming the next? the thing they were most focused on was that she wasn't taking in enough nutrition to support herself and so it was decided that she needed a g-tube. the doc told them to reinsert the ng tube to make sure she could tolerate feeds and the surgery date was set. i was ok with her getting the g-tube. i actually had an appointment with this gi and that was one of the things i wanted to talk to him about. i was upset tho b/c i felt like there had to be a reason why she wasn't willing to eat. and there definitely had to be a reason for the pain. so finally her pediatrician came in and i told him my concerns and suggested that it might have something to do with her bladder? she didn't have any signs of infection, but maybe a kidney stone or something? she had had some distension in her lower abdomen that suggested maybe her bladder was holding on to the urine too long and maybe that was causing pain. so a renal ultrasound was done and everything looked great. then another doc came in and felt her bladder and suggested that if she continued to show signs of pain that there was a medicine she could take that would help loosen her bladder and urinate. well wouldn't you know that after all that the kid showed no signs of pain anymore? she has been back to her giggly wiggly self (a kid i haven't seen since before she started the phenobarbital honestly). i don't know what it was, or if it's really gone, but she seems to be feeling MUCH better. the nurses are all amazed at the change in her. she is smiling at them when they come in, she looks and responds when you talk to her. she's happy as a lark. she's bouncing around the bed. she's back to my old akaiya.

g-tube surgery is still set for this afternoon. i know that it is in kaiya's best interest to have the g-tube. she really doesn't ever drink enough, which may be why she has issues with constipation. and when she gets sick she loses weight so fast b/c she refuses to eat. so with this i'll be able to keep on top of all those issues. and she'll still be able to eat orally. i still don't know how i feel about the surgery though. i know she'll still be able to eat orally, but for some reason i feel like it's taking away her last "normal" function. plus it's another open port that just seems like an invitation for infection...oh well, just another twist on the trisomy highway.

day number 5

akaiya has been in the hospital since tuesday night. she started having fevers on sunday, but they would come down so i didn't take her in to the doc. she wasn't really eating that well, but i figured that was to be expected if she was feeling a little poorly. then tuesday came around and the lil one's temp went up to 105.8. so off to the hospital we went. they ran a bunch of tests and couldn't really find anything. so her pediatrician ordered a chest x-ray even tho her chest sounded okay to the docs checking her. they found pneumonia. we were admitted and here we've been since then. she hasn't had any fever since wednesday morning, but she has been running cold. we have been told that the antibiotics are working and her chest sounds good (no one ever said it sounded bad...so i don't view this as an improvement, but they seem happy about it). the main concern i have at this point is that she is not eating. the main concern they have is that she is having seizures. she isn't having any more than usual and they are not as intense. her pediatrician is upset because i use a specialist (neurologist) that is not associated with this hospital. he has told me that if i'm not willing to switch he doesn't know what he can do for us, and that he doesn't usually work with patients if they have outside specialists. well you can be damn sure i will not be working with this ped after this whole escapade. the person that is important here is akaiya, not you dr. , i am going to get the best care possible for my daughter. if that means having one doctor from each of the hospitals in this large city, then that's what i will do. when she got sick my head said "take her to u of c"...hope is closer tho and her ped is associated with hope so here we are. i'll be sure not to make that mistake in the future if the kiddo needs the hospital again. so, they tried calling kaiya's neuro and had to talk to one of his partners, the head of neurology came in and talked to us and said that her med levels are within range and there is nothing she can do for us...at the partner's recommendation they gave a bolus of phenobarbital last night b/c her pheno levels were on the low end. needless to say, the kid was knocked out and slept very well all night long. as did her mama surprisingly. so basically we are waiting for her to eat, or for the doctors here to be willing to come up with some type of plan to figure out why she is unwilling to eat. she has been happy for the most part. they did a blood draw yesterday from her wrist b/c it's impossible to find a vein on her...she screamed and was pretty miserable the whole day afterward. she woke up all smiley and happy this morning tho. and we got a container of pudding into her. yay! it took an hour and a half, but that's more than she's eaten since monday. she's sleeping peacefully right now.

i know i've missed a lot of important parts of what is going on...but it's been 5 days in this little room and i'm starting to lose it a little i think. facebook has more accurate updates.

we went for a photo shoot today

i finally gave in to kaiya's nana and took the lil lady to get professional photos taken. akaiya laughed through the whole session. it was pretty funny =) i think she looks like a cupcake in her pink dress. i'm only posting a couple of the pix here - the whole photo shoot is on facebook.

fat kid

kaiya (like a lot of t18 kiddos) has always struggled with her weight. she is really good at losing it, not so hot at gaining tho. at least that used to be the case. this school year the teacher has had to add another snack time into the day b/c of another student's particular needs. she asked if i would like her to try and give kaiya an extra snack at that time and i said sure, why not? well apparently that's all it took for kaiya to start putting on tons of weight! she has been feeling really heavy lately and i was thinking that it's because i'm coming home so tired. everyone else that picks her up was saying that she is really heavy as well tho...so i finally gave in and got out the scale. the lil girl weighs between 37 & 38 pounds. she wouldn't keep her feet up in the air so i couldn't get an accurate reading, but when she moved them up a little bit the scale would fluctuate between those two. my munchkin is turning into a lil fatty! well, maybe not quite...but she is packing on the pounds pretty quickly for herself.

another visit

we had our 4 week check-up with the neurologist. and it went so "well" that i called her old neurologist and made an appointment with him... He said that the seizures she is having do not have a name. he also told us that the seizures themselves don't hurt her or cause any damage to her brain, but that the electrical activity that is going on is causing severe brain damage. the medicine we were prescribed initially seemed to make the seizures more intense. we told him this and he switched from a liquid to a sprinkle form. we just started it this past weekend so we will see how it works. he does not want to do any other tests (besides the blood levels) because he doesn't think it's necessary. i asked him about doing an mri to check on the cysts on her brain and to check for tethered cord, he does not want to do an mri. he did the same thing at this visit that he did at the first one, he walked in the door and instead of introducing himself he made a comment about how trisomy 18 children don't live as long as she has. he really needs to check with some of his colleagues because we have had conferences in this hospital, they have seen kids MUCH older than kaiya. he also ignored her completely at this visit. would it kill him to acknowledge her presence? we were given a copy of his report that he sent to kaiya's pediatrician. it seriously looks like it was written by a kid that got a hold of a medical journal, took some really large words out, and repeated the same phrase over and over again. all that goes through my mind when i think of this doctor is the old joke "what do you call the guy that graduates last in his class in medical school?" i feel like i should apologize to kaiya for subjecting her to substandard care. i feel like i should apologize to her school for not having any good answers to give them.
kaiya's previous neurologist was great. he seemed a little odd on our first visit, but he was really thorough, and he talked to kaiya. we haven't seen him since 2007 because kaiya wasn't having any seizures at that time. luckily as long as you get in within 3 years you are considered a returning patient. our last visit was april 19th 2007 - our next appointment is april 14th. we are getting in just in time!
other than the seizures nothing else is new. kaiya has been pretty healthy for the most part(besides the seizures), although she does seem to be a little congested today... she loves going to school everyday and the staff at her school is amazing. they are being very understanding and giving me more info about seizures than the neurologist is. we are waiting for the warmer weather so we can get her bike out and go to the park to ride the swings.