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!

long time

it has been a LONG time since i have updated everyone on kaiya's goings on. she has still been having her "episodes" (i'm still reluctant to use the term seizures). we had an issue at the hospital when we went to get the eeg so another one is in the works.

other than that, she has been a pretty healthy kid. (quick! knock on wood!) she has her usual issues with constipation, but once we solve that she returns back to her happy self.

she continues to be the happiest kid i know. i seriously don't know what she is laughing at most of the time, but it's infectious so i laugh right along with her! and then she laughs b/c i am laughing...and it goes on and on and on ;)

the cold has settled in, and so have we. not so much going out, more snuggle time at home. the kiddo that used to push away when i would try and take a nap with her, now snuggles in and falls right asleep.

she's continuing to put on weight. at the last weigh in (2 days ago) she was 32 pounds and she was 40" long a couple weeks ago. part of me is happy that she's continuing to grow, and a very small part of me (the one that has to lift her wiggly body off the floor or out of the tub) says - whew, i miss the 10 pound tiny body!

the christmas tree is up, and kaiya loves to stare at the pretty lights. she hasn't gotten under the tree yet this year, but i'm sure once she realizes that the super fun train set is under there she will go right for it. we are hoping to get our xmas pictures done soon (VERY late this year on that!) as soon as i have them i will post them.

happy halloween

akaiya didn't get to go trick or treating this year, but she did get to wear her costume with her friends at school. kaiya dressed up as an elf sitting on a mushroom. she seemed to like it ;)

taking a different path

been a long time since i've updated. kaiya has been going back and forth with a cold. she coughed up a big chunk of mucous the other day and i haven't heard her cough since so hopefully she's done with it. we had to go to the doc to get her ears cleaned and we got an order for an eeg at the same time. kaiya has been doing something new that has me worried she is starting to have seizures. when i wake her up in the morning she looks like she startles - her arms fly up and her legs shoot out. sometimes it lasts less than a second, and one time it lasted about 10 seconds. she doesn't stop breathing, she doesn't change color, she still seems to respond to stimuli (if i go to wipe her face she flinches just like usual) so i don't know if it's a seizure or if she's doing something else...although i don't know what else it could be. and it only happens when i've woken her up. if she wakes up on her own i don't see it...very odd.

other than that weird stuff she has been doing well. she's gaining weight, getting taller, charming the heck out of her teachers. i'm trying to teach her how to say mom. so far she just says "mmmmmmm", but at least it's a start. very occasionally she slips and says something that sounds like mom, and then we celebrate....but mostly it's just mmmmmmmmm in varying lengths and volume.

we are preparing for halloween. kaiya usually has pretty crazy costumes, but we don't have anywhere to go this year so she's taking it easy and being an elf - her wheelchair will be transformed into a mushroom so she can be an elf sitting on a mushroom.

please send out some warm thoughts that this weird behavior is either not seizures...or something easily managed.

frogs

i borrowed this from an email i received today. thought it was very appropriate.

Two frogs fell into a deep cream bowl,
One was an optimistic soul;
But the other took the gloomy view,
"I shall drown," he cried, "and so will you".
So with a last despairing cry,
He closed his eyes and said, "Good-bye".

But the other frog, with a merry grin
Said, "I can't get out, but I won't give in!
I'll swim around til my strength is spent.
For having tried, I'll die content".

Bravely he swam until it would seem
His struggles began to churn the cream.
On top of the butter at last he stopped
And out of the bowl he merrily hopped.

What is the moral? It's easily found.
If you can't get out - keep swimming around.