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.

the adventure continues

i had mentioned awhile back that kaiya was having episodes that we thought were seizures. we had an EEG this past wednesday. my parents took her because i had to work, and when they got home there was already a message on the answering machine - the hospital asking me to call the neurologist right away. so i gave them a call and they wouldn't give me any information, they just said the neuro wants to see her as soon as possible, the next day if we could make it. in my past experiences it has always taken at least a month to get in to see a neurologist so i was pretty concerned that they were making room for us right away. i took off of work so i could take her myself. we showed up at the hospital 45 minutes early, which proved to be a smart choice b/c we had to fill out a bucketload of paperwork and they told us the doc was running behind, but since i got my name in early we were actually seen at our appointment time (that has never happened at this hospital!) we go to the room, the nurse takes her measurements, and she tells us the doc will be with us in a minute. this guy walks in with a chart, says "akaiya?", i nod, and he goes on to say "she's 7 and trisomy 18? they don't usually live that long do they?" all i'm thinking in my head is, "hi, i'm kelly, nice to meet ya." so he starts going on with his exam - and i realize that he didn't want to see her right away because she was in serious peril, he wanted to see her right away because he thought she was some type of oddity being 7 years old with t18. now, i know the correct response from me would have been to embrace the situation and educate this person...but that wasn't where i was at mentally. i thought my kid was about to be admitted to the hospital and they were going to tell me that she required some crazy surgery or worse...his attitude totally shut me down. so instead of asking the pertinant questions, i was just nodding and giving him basic replies to his t18 questions. basically, he said that she had an abnormal EEG. he asked me to describe the episodes b/c she didn't have one during the test. he then told me that he was prescribing depakote. i am not the biggest fan of giving medication...and i didn't ask all the questions i should have - like what type of seizures she's having and what are the effects of the meds...he did say the meds might make her tired. i guess those are the types of things i'll be asking at her follow-up in a couple of weeks. we started 2 ml of depakote 2x/day each week we have to add another ml till we get to 4 ml 2x/day. she seemed a little sleepy on saturday, but today she has been awake all day long, and is still partying in her bed as i write this...she's not the best at taking her meds, kind of spits them back at me, but hopefully she will start to like it.

together

maybe it's just me, but i've noticed something when i'm out and about with akaiya. it really struck me yesterday when i was standing in line at our local wal-mart. there was a man with his two children waiting behind me. they were both boys, big boys, one looked to be about 8 and the other a teenager. the younger one was sitting in the cart, which i thought was odd, but hey - to each his own. so as we were waiting (i always get into the line with the slow check-out!) i talked to kaiya, and people watched. i noticed that the boy in the cart was really interested in akaiya. at first i just figured he was staring at her because she was throwing herself around and laughing hysterically. then she gave out one of her big yells, and he clapped his hands over his ears and looked really worried, stared at me, looked to his dad, kind of whimpered, and said something unintelligible. it was at this point i started to realize that maybe this boy had some issues of his own. so i kept an eye on him and tried to keep kaiya from yelling (good luck with that...) watching them i became pretty sure in my assumptions and it made me realize that whenever i am in public it seems like people that have children with disabilities seem to assemble together even if they don't know each other. i have been in countless checkout lines and have families come stand behind me. are we just naturally drawn to each other? i even notice myself going to the lines in the grocery store that have people with disabilities doing the bagging...comfort in the known?

so back to my checkout line at wal-mart. the person in front of me finally got themselves together and it was my turn. it took forever and a day to get all the stuff i was buying bagged and into the cart and as i was going to pay the older boy was saying something very quietly to his father, and then he was pointing and saying "over there, over there" - the language he was using and his gestures made it evident that he too had some issues. i was walking to the door, and saw where the boy went to stand with his mother, and what looked like his sister - who also appeared to have issues....and it sent my head reeling! here i am dealing with 1 child. yeah, she's got some things going on, but for the most part she's pretty easy. she's getting heavy, but hey - i need to work out and get some muscle anyway! to be the parent to 3 children with disabilities...it's just beyond my comprehension. i get a little taste of it at work each day i guess...but i'm sure it can't compare to raising 3 children. it reminds me to always be thankful for what i have b/c some people have a lot more difficulties that i do.

new year = new skills

happy new year everyone! we hope that everyone's holidays were safe, happy, healthy, and filled with lots of love from family & friends. kaiya and i spent christmas eve and christmas day surrounded by lots of family members. we rang in the new year together watching the countdown on one of the local channels. we both stayed up just long enough to say happy new year, and then it was off to bed. we have both been on winter break from school, and have been able to spend a lot of one on one time together.

having a break from work has given me a chance to really pay attention to all the cool little things she is doing now. i think that one of the biggest blessings of having a trisomy child is learning to appreciate all of the tiny little steps she makes towards her milestones. one of the things i noticed has to do with her communication. i think i get so used to just sticking to the routine, that i fail to notice how kaiya responds to it. our routine has completely gone out the window these past 2 weeks b/c both akaiya and I like to sleep in and stay up late (school is going to be awful on monday!) when i take kaiya out of bed, she immediately turns and looks at her changing table. if i walk away from it she looks back at it and just stares. i saw her do this a couple of times and i decided to see if she was using her eye gaze to tell me where she wanted to go. lo and behold, she does! as soon as we finish at the changing table in the morning we usually go to the kitchen and get breakfast. she stares in the direction of the kitchen and when she sees her high chair she starts staring at that. i tested her by passing it up a couple times and she squirmed herself around so she could keep staring at the chair until i put her into it. so then i started to wonder if every time we went to the changing table she would expect to go to the kitchen and eat...and she doesn't. if it isn't around the time i would usually feed her, she stares at her mat, or her chair. the kid is making choices, and now i feel guilty b/c i have probably been ignoring her for a long time! so we are going to have to be a lot more aware of the non-verbal communication going on with this lil lady!

akaiya has been trying to sit herself up for a long time now. she gets into a side position on her elbow, and that's usually as far as it would go. a couple of times she launched herself all the way up, but it didn't happen often, and when it did she usually just fell over the other way. well today mama was hanging out on the couch and kaiya was laying on her mat. she was looking like she was going to fall asleep so i just let her be. all of a sudden i looked up and found her almost sitting all the way up. she had her elbow extended and was using her hand to support. i grabbed the video camera, but i didn't get her getting into this position, only sitting in it already. i'm so proud of my little munchkin for teaching herself how to sit up all on her own! hopefully she made a new year's resolution to become mobile!