mmmommmmmm

kaiya has been really sleepy lately. i feed her breakfast in the morning, and she passes out 2 minutes later - in the high chair! she has been eating okay. she's been in a good mood. there is no sign of sickness...she's just sleeping a lot. hopefully she's just taking advantage of her vacation time and getting all rested up for school :)

the other day kaiya was playing on the floor. i called her name to try and get her to look at me and she answered back with "mommmmmm". my mother and i almost fell out of our chairs! i don't think she connects the word with me - but maybe she can learn. she is sitting on the floor right now just saying "mmmmommmm mmmommmm mommmm"...what a goofball :)

Christmas photo shoot

we finally got everything together for akaiya's annual xmas photo shoot. i had some great ideas to try this year, but the princess was NOT in the mood...so we went very basic. i haven't decided which one we will be sending out. i can't believe i am getting my xmas cards out so late this year!

more work needed

kaiya had her first follow-up visit with her PT at the hospital. it was wonderful to be able to see everyone again - kaiya was really excited to see her old friends! she was evaluated and the PT told us what i already knew. kaiya's back is looking worse...so hopefully if we change a few things that we are doing kaiya will improve, or at least not get worse...we still have to look into changing her chair, or getting a new one. this chair that she has is falling apart daily. it's also not the best seating situation for kaiya.

on a better note - miss thing's cold went away pretty fast. she still coughs in the morning, but she sounds a lot better during the day. she has a new favorite thing to do - she shakes her head back and forth like she's saying no. she does it in between rocking back and forth. she laughs her little head off the whole time she does it. she is also licking the backs of her hands and her arms. it leaves the skin all red and chapped - not pretty. i've been trying to discourage the behavior, and find a cream that will cure all that chapped skin. this poor kid has dry skin anyway - add in the drooling and licking...it's not good at all.

dreams

last night i had a dream, and in this dream kaiya could communicate. she wasn't talking clearly, it was actually a mumble. but for some reason i could make out what she was saying with the mumbles. my mother was in the dream and i remember looking at her and saying, "i might sound crazy, but i just understood what kaiya said." she looked at me in the dream, and said that there was no way i could have understood anything... but then kaiya began her talking again and i understood every word of it. it was one of those dreams that is so real, you expect things to be as they were in the dream when you wake up. i completely expected to be able to understandwhat kaiya was saying when she started her mumbling this morning.

no such luck.

but somehow the little princess always seems to get her point across :)

trip to the doc

akaiya has been congested for a couple of days and yesterday she threw up at school so we decided to take a trip to the doc. she is also doing this weird breathing thing. it's almost like she holds her breath, and then she gasps for air. she does it a lot when she wakes up, and as time passes she does it less and less. this morning it was scary because she was holding her breath for so long she started shaking, and then she was gasping for air. by the time we got to the doc she was her smiley goofy self, so i felt like an overprotective mama...but hey, i have that right :) so the doc checked kaiya out and basically said she sounded okay, just had a lil cold. she cleaned a whole ton of nasty orange/brown wax out of kaiya's ears which might be why the kiddo was rubbing her ears...she hasn't done it since they were cleaned so maybe the wax was tickling her or something. as the doc was checking kaiya's lungs she started talking about a heart murmur...kaiya has been to the cardiologist and we were told that she did not need to be followed, her heart is fine, so i didn't really ask questions of this doc. it wasn't our usual pediatrician so i was thinking that she was hearing lung noise and attributing it to kaiya's heart... the doc finished her exam and just told us to turn on the humidifier and keep suctioning kaiya and she should be fine. as i was getting us both bundled up the doc came back into the room and said, "she get's followed up by a cardiologist right?" and i told her no, and went into what the cardiologist told us when kaiya was young... and then i asked her if she thought we should be seeing a cardiologist and she said that it sounds like a small murmur, but she thinks we should see someone. so now we have an appointment to see a cardiologist in january. hopefully it's nothing...i would hate to think kaiya has a problem that we should have been treating all along :(

possible career path???

akaiya has been trying really hard to get her little self into a sitting position. she regularly gets just about there and then topples over (giggling the whole way...) i have been trying to capture her getting into the position on video but whenever she sees the camera she starts hamming it up and acting like a goofball.

this is what she looked like this afternoon. i'm thinking that she might have potential as a yoga instructor???

winter is really here

well, we finally had to break out the good ol suction machine. i thought that we might be done with it - but kaiya's lil nose was all crusted and full of boogers this morning so we got to the business of sucking them out with our trusty tool. i've been worried that kaiya might be getting a cold or something just because she has been out of sorts. she has had the whole week off of school and she pretty much just ate and slept. she would play for awhile and then all of a sudden we would turn around and she would be passed out. not like the little princess at all. so i guess it was no surprise to see the first signs of a cold. kaiya doesn't really like having anything put near her face unless she is the one in control so there was a lot of the smacking and pulling at mommy's hands - but once i get her hands out of the way and get down to business she just giggles. i have to admit, i tried the machine once just to see if it hurt - and it tickles like crazy so it's no wonder that she gets the giggles. thinking about her getting sick caused me to check the cabinets for medicine, if she should need it. and that's when i realized that we don't even have any children's tylenol or motrin or anything for her. kaiya's mommy isn't all that big on doling out the medicine anyway...but it just goes to show how lucky we are that she is as healthy as she is. i can't even remember the last time i had to give her tylenol or motrin. i usually have benedryl or something on hand (more because she get's eaten alive by mosquitos in the summer time and has nasty allergic reactions) but even that was out of date. heaven forbid the kid wakes up with a fever in the middle of the night. mommy would be dashing out to the 24 hour walgreens in her jammies with a crazy haired sick kid by her side. not a pretty picture :(

on a good note, we had a wonderful thanksgiving dinner. the food was excellent and some of kaiya's most favorite things were there. mashed potatoes and gravy, sweet potatoes with butter and brown sugar, turkey....nana sure knows how to cook an excellent meal :)
kaiya is definitely thankful for all of the friends that she has made and hopes everyone has a great holiday season.

silly girl

the crying has settled down a bit. i have no idea why it was there...but she hasn't done it for the past couple days so maybe it's gone. she does still giggle uncontrollably at the strangest times...but giggling is fun so we'll keep that. she's still a sleepy girl - taking a lot of naps in school...but i have been sleepy too, so maybe it's just that time of year. i used to joke around that i was a bear, b/c i wanted to hibernate in the wintertime...maybe kaiya is a bear cub :)

on another note...kaiya's wheelchair has been randomly losing parts. not a good thing i'm thinking... so i called up the place where we got it, and of course they can't do anything about it b/c her insurance has changed. so now i have to find a place that will fix a chair they didn't provide. lovely. even though kaiya has some growing room left in this chair, i am of the mind that a new chair would probably be a better option. i'll have to talk to some people and learn some more before i start down that road though...

Akaiya all bundled up, waiting for the bus to arrive to take her to school. She keeps putting her hands down on the side of the chair like that which gives me the urge to get a chair with big wheels to see if she would push it...she would have to build up lots of strength, but it could be fun!

always the lady...this kid just cracks me up sometimes. she was rocking away in her chair one minute, and the next i look over and see her totally knocked out. of course, since she was wearing a dress, she had to have her legs crossed. one of the many moments in time i think to myself how boring life would be if i didn't have akaiya to entertain me :)

still weird

akaiya is still not herself and i'm beginning to wonder if it's the start of a growth spurt or something...is it true that kids get growing pains? do trisomy kids get growing pains even though they grow so slowly? she has had a wacky sleep schedule...she wants to sleep for hours, or she doesn't want to sleep at all. she eats like a pig, or pushes her food away (or spits it out at school...uh-oh going to get a detention for spitting at teachers!) it's like dealing with a moody teenager i swear. one minute she's happy and giggling all over the place - the next she's crying for no apparent reason.
i tried to sit her down and ask her what was going on, and all she had to say was "eh eh eh eh eh aaaaaaaaaaahhhhh!" hopefully this moody unpredictable child will go away and my content relaxed little girl will come back soon :)

notes...

kaiya came home from school the other day with a note from her lil friend. her best bud in class drew her a flower. my heart just about melted! it's so awesome that even though she can't communicate verbally, she is still able to connect with the other kids and they still want to be her friend. i made sure the teacher told the child that kaiya loves her picture and she hung it up in her room. he was excited and said "i hoped that would happen and i was right!"

the school is having parents come into the classroom next week for national education week. i am going to get a picture of kaiya and her bff together so i can put it in a frame for him.

acting odd...

kaiya is usually a very happy little kid. she's usually smiling and laughing. sometimes the laughing can be a little creepy b/c she's in bed, all by herself, laughing away...but it's awesome that she is as jolly as she is :)

but now she is starting to cry at random times... kaiya hardly ever used to cry - it got to the point that when she did, we all looked around trying to figure out what that strange sound was before we realized it was her. (and then we would all freak out thinking something was TERRIBLY wrong b/c she NEVER cries...) so now a couple of times a day she will just start crying. and i have no idea why. it's usually when she's playing on her own which leads me to believe it's a way to get attention, but the past couple of days she has done it when someone is holding her too. and she used to stop when someone just said her name, but the past couple of days she has needed her pacifier to quiet her down. her teacher has been saying that kaiya is sleepier in school, she has been taking little naps and sometimes big ones! i have noticed her being sleepier at home as well. i just can't figure out what is goin on with her. there are no other signs that she might be sick, no fever, no cold symptoms...i just don't know what is going on with the lil lady.

boyfriends already?!?!

halloween day there was a party at kaiya's school. the parents were invited to come see a schoolwide costume parade and then stay in their child's classroom for a little celebration. as i was changing kaiya into her costume a little boy came up and informed me that kaiya was his girlfriend. i just smiled and said "oh really". and he preceded to tell me how she was his girlfriend and that she loved him. then the teacher told me how the two of them are always together - and it wasn't just on his part - if kaiya doesn't see him she looks around to find out where he is and gets upset if he isn't around! the little boy's mom told me that every day she hears about akaiya at home. i knew my lil girl was a flirt, but boyfriends at age 6??? oh my! :)

wild ride

just so you know what kaiya has to deal with on a daily basis, here is a lil example of an event that happened the other morning...

kaiya and i are not morning people...we don't wake up quickly or willingly. so the morning started out like any other one. i got up late and was rushing to get kaiya ready for school. i wheeled the chair outside to greet the bus and realized that kaiya wasn't wearing her shoes. so i kicked the brake on the chair, and ran back into the house to get them. when i came back out, kaiya was rolling on down the driveway towards the bus! i started running (which is a sight unto itself...) and grabbed her just as she rolled up to the bus. the bus driver had no idea there was a problem because somehow kaiya rolled right up to the bus. they thought she was moving herself!

just a little taste of the antics that go on here daily :)

giving nana props too

so, since we have a post dedicated to papa and what an awesome guy he is, it's only right that we have one to show how awesome nana is too...

kaiya's nana spoils her rotten! seriously! and kaiya knows that she can just give her a little look, and nana will do whatever she wants her to... the kid is a manipulator! (don't know where she gets that from!)

there are certain things kaiya will only do for nana - some sweet, some not so sweet :) like, kaiya does not like to fall asleep in anyone's arms. she would rather be on the floor, in a bed, anywhere she can stretch out. but she'll fall asleep in nana's arms no problem. nana just holds her close and pretty soon you hear the snores and know kaiya has fallen asleep snuggled in with her nana.

somehow kaiya knows when you need a little lovin', and that's usually when she will show off a new skill, or a skill that she hasn't used in awhile. well, nana goes away for the summer so she doesn't see kaiya as much. we were on the phone talking to nana one night, and she asked to talk to kaiya. now i thought nana must be losing it because really, all you're going to hear from kaiya is some heavy breathing and big loud yells..but hey, who am i to judge right? so i put the phone to kaiya's ear and nana is saying all the usual "hi, i miss you, blah blah blah..." stuff. well wouldn't you know, akaiya decides to say "hiiiiiiiiii" to her nana. kaiya says hi sometimes. she doesn't say it at the proper times, or with any regularity, but it is one of her fun little tricks b/c sometimes she gets it right. this night she got it right in a big way! i was so shocked i tore the phone away from her and asked my mom what she said to her, and of course nana was crying so she couldn't really tell me :) kaiya must have known nana needed a lil extra love so she gave her a "hi"...at least that is what nana and i are telling ourselves :)

so we know we definitely don't say it enough, but thank you to nana for all of the cool costumes, and outfits, and toys, and snuggles, and songs, and anything and everything :) kaiya appreciates you and so does her mama.

he's the man

i'm sitting on the couch watching my dad play with kaiya and it's probably one of my favorite things to do. kaiya absolutely adores her papa - and it's obvious that the feeling is returned. they play the "who can yell the loudest" game, or the "tie you in a knot" game, or her favorite "echo the crazy sound" game. whatever games they are playing, kaiya is ALWAYS smiling and laughing. and he's usually smiling and laughing too :)

ever since kaiya was a teeny tiny little baby the two of them have had a special bond. i was continually turning to my mom and asking her "was he like that with me when i was a baby?" i still do ask her that... he continues to amaze me all the time with how wonderful and accepting he is. the first person he looks for when he comes in is "the noisy baby", and if she lets out a wail he is the first one to come running to see what is the matter. kaiya has a whole set of "i love you looks" that are just for him.

i guess it really is true, you never appreciate your parents until you become a parent yourself.

happy halloween!

HAPPY HALLOWEEN!!!

akaiya wore her animal costume to school today and got lots of attention. one little boy actually knew who she was! we decided to skip spraying her hair pink and use a pink wig. it's a double bonus b/c mom likes to wear it too! akaiya decided to skip trick or treating and just take a nap - she's a girl after her mom's heart :)

akaiya was letting us know she was not ready to have her picture taken...

working the cheeseball smile :)

yelling like animal!

positive thoughts for annabel

one of our friends from far away, annabel, has been having some problems with her health and needs some positive thoughts sent her way. kaiya and i met annabel two years ago in salt lake city at a SOFT conference. we were so excited to see them this year in denver at the SOFT conference. annabel is a sweet little girl with the most infectious smile :) we will definitely be thinking of her often and sending lots of warm wishes out to her family while they try to figure out what's going on with her.

Click here to visit Annabel's blog

pre-halloween party :)

kaiya's mom loves halloween. and for those of you that don't know - i go a little overboard on kaiya's halloween costumes. lucky for kaiya (and mom) nana is an excellent seamstress. so every year we go to her with some wacky idea for a costume and she gives us looks like we are nuts - and then creates a masterpiece! so this year we decided on animal from the muppet show. we got to do halloween a week early b/c we went to a campground with our family today that has a parkwide celebration. it just goes to show how old mama is getting b/c NONE of the kids had any idea who animal was. they all thought she was some funky looking thing with pink hair. animal has always been one of my favorite muppets. i was sitting around trying to come up with something fun for kaiya to be and it all of a sudden clicked! animal has crazy hair - so does kaiya. animal is all skinny legs and arms - so is kaiya. animal yells a lot - SO DOES KAIYA!!! it was perfect in my mind, but oh so disappointing that kids these days don't have any idea who jim henson was or have any familiarity with his awesome muppets :) so i just rolled kaiya around and let her yell at people and pretended she was saying trick or treat...and let them think she was some sort of deranged clown or creature.

TRICK or TREAT!

very sleepy after all that candy collecting :)

more sleeping after mama tried to get the pink stuff out of kaiya's hair...

the dress...

okay, so i was a bad mom and forgot my camera when we went to the fall funraiser. but, since there were some requests, i put kaiya back into the gold silk bubble dress to get some pix. the hair is not at its best...but bear with the girl - she just got up from a nap and i tossed her into her party frock and busted out the camera :)

fun filled evening

last night we were lucky enough to be able to attend a fundraiser held by noah's never ending rainbow. they held a casino night at a country club in our neighborhood and everyone seemed to have an excellent time. there were two singers that were both amazing, great food & drink, and of course the wonderful families. there were 4 trisomy children in attendence (akaiya included) and one of the families travelled all the way from utah! it was the first time they had ever met another trisomy family in person. how exciting! dana and her family always have fantastic events and we can't wait for the next one!
akaiya initially wanted to wear a showgirl outfit in keeping with the las vegas theme. i had to convince her to tone it down, so she went with an understated gold dress and looked very classy. she enjoyed all of the attention given to her and managed to keep her little self awake until 1:00 am when we got home! she is definitely a party girl...

false alarm

well, as i suspected, yesterday's communication journal was just a mistake in wording. akaiya did not get up from a laying down position to a sitting up position. she was placed into a sitting position and maintained the position independently - which she has been doing since before she turned 1 so that's no big news...so we will continue to work on teaching kaiya to push her little self up into a sitting position. i think at this point she really has no reason to do it for herself. and kaiya doesn't do anything unless she wants to! she is a princess after all...hahahahaha

new skills ?!?!?!?!?

one of the really cool things that akaiya's school does is send home a communication journal that lets us know what she has done that day, and has a little note to tell me any specific things i might need to know. well today the note said that "akaiya sat herself up independently on the mat"! kaiya has been trying for months now to master that skill. she get's herself up on her side pretty far but just falls over at the last minute. to hear that she finally got herself all the way up makes me so proud! i'm a little sad that it happened at school and that i missed it...but hey, she'll show me some day right? i tried to get her to do it again at home, but she just looked at me and laughed and laughed and laughed... i also sent a lil note to the teacher, i just want to clarify that she really did sit up by herself. and if she is starting to sit up independently that means i'm going to have to get serious about finding her a bed that fits her. the crib is getting pretty crowded...

Akaiya at the JDRF walk Sunday October 5th, 2008

akaiya loves balloons

i went to the dollar store yesterday with my niece mary to pick up a few things for school. right in the middle of the store they have a big display of mylar helium balloons so the first thing my niece does is start talking about how much she loves balloons and oh boy are those balloons pretty... i just smiled and nodded, i knew i was going to get the kid a balloon - i just didn't want to give it to her till we were walking out b/c her walking around the store with a balloon would be a recipe for disaster! so we get into line with our arms loaded with stuff (it's so easy to talk yourself into buying something if it's only a dollar!) and i had forgotten about the balloon. this grandmother was in front of us with her grandson, and she started asking him if he liked the balloons and ended up getting him a couple of them...so then my little friend starts staring longingly at the balloons in the middle of the store - the ones right next to us in line were not good enough i guess. so we get out of line and go browse through the ones in the middle of the store. she picks a smiley face one out for herself and a disney princess one for kaiya. she was convinced that kaiya loved pink and she just knew that disney princesses were kaiya's favorite. so now we head back to the line and the precious darling says quite loudly "hey, that guy took our spot in line!" i love 3 year olds...
we went back to my house and waited for kaiya to get home from school so mary could give her the balloon that she bought for her. kaiya came in way later while mary was supposed to be napping...the first thing she saw was the two balloons hanging out on the ceiling. her little face lit up like a christmas tree. so we brought the balloon over so she could check it out. it was funny b/c kaiya is always really tired when she gets home from school. she's on the bus for 45 minutes at least before she gets home so it's a long trip for her...not that the school is that far away, it just takes that long b/c she is the last stop. so the funny part came in when kaiya couldn't decide if she wanted to be crabby b/c she was tired or happy b/c she had a big shiny balloon. she went back and forth between getting all scrunch faced and whiney and then being a scrunch faced b/c she was smiling so big. sleep ended up winning. when she got up the first thing she played with was the balloon. and listening to her giggling made me want to giggle right along with her. she gets these deep belly laughs and i swear it's the best sound in the world...

another one bites the dust...

tooth #4 finally made it's way out today. kaiya has been playing with this little loose tooth for awhile now. it makes me really nervous when she can push them out with her tongue and suck em' back in - so i pulled it out. somebody taught me a trick where you just twist the tooth to the side slightly so that's what i did and it popped right out. i can already see the tooth coming in underneath it! one of my fears was that we would have to wait forever for her adult teeth to come in because her teeth took awhile to come in originally, but they have come in very quickly...even quicker than some of the "typical" children we know! i guess you just never know what you're going to get in trisomy land... so now kaiya has a really big hole to stick her little tongue through - and there isn't any guard keeping the drool in so i guess kaiya will have to travel with a towel of some sort until the teeth grow in all the way. we'll also have to get her to the dentist b/c i don't know how her little mouth is going to hold all these big teeth!

memories

it was discovered that our crawlspace had apparently flooded when we had all that rain a couple of weeks ago. it was definitely a stroke of luck that someone went down there - usually we avoid going under the house b/c it's a dark scary place. so i had to go down and rescue all of kaiya's old clothes that were put into cardboard boxes instead of plastic bins. while i was taking care of that i decided to organize all of kaiya's clothes by size. i didn't think it would be such an emotional walk down memory lane but it was! i always think of kaiya as being this tiny little thing - she is... but it's just amazing to see the little preemie clothes that she wore for the first couple months of her life! and to see the little outfit that she wore for her one year picture, and realize it was sized 3 - 6 months... it was nice to be able to make the comparison between her teeny weeny preemie outfits and the little girls smalls that she's wearing now! i always think of her as the perpetual baby, but she is getting to be a kid now.

and then we go on to the fact that i have 14 plastic bins filled with clothes and shoes from the past 6 years of kaiya's life...

akaiya's new friend

this week we have had a new addition in our household. a doggie! kaiya has always loved dogs. for some reason she has always had a huge reaction to dogs, especially small ones. put a cat in front of her, she might smile or she might not. put a dog in front of her, and the kid lights up! so when a family friend asked us to dogsit we were very excited to "try out" having a dog - just to see what kaiya would do. so far it has been excellent. one of the concerns that the dog's owner had was that this dog isn't really used to being around children - she's actually a little afraid of them. but for some reason this dog is fond of kaiya. and kaiya absolutely adores her! the dog's name is maggie, and it's definitely going to be hard to give her back! one of the cutest things that lil maggie did was when she was given her toys the first thing she did was take this squeaky toy to kaiya and she kept putting it in kaiya's hand, trying to get her to play. kaiya thought that it was the best thing ever and was laughing and just vibrating b/c she was so excited! kaiya likes to move and roll around - but ever since the dog got here she has really been scooting around on the floor trying to get to her. it's awesome to see kaiya being so motivated to move and use her little muscles!

Kaiya playing with Maggie

teeth

awhile ago akaiya was playing on the floor while i went upstairs to change the laundry. when i came back down kaiya was licking the floor and when i went to move her i noticed that her cheek was red. kaiya likes to lick the floor so i thought that she had just abraded it slightly while she was doing that. when i turned her over i noticed that she had blood coming out of her mouth. i started to panick a little bit at this point b/c i had no idea how she could have gotten an injury that would cause her to bleed like that. if she would have hit her head on the floor i would have heard it...so i looked into her mouth and saw her tooth missing. at this point i was getting really anxious! i just happened to look behind me and noticed this tiny little tooth laying on the floor. i was really stunned to see that she had lost a tooth. i have my hands in her mouth quite a bit working on oral motor exercises and i would think that i would have noticed a loose tooth - but apparently i didn't. i still wasn't convinced that the tooth had come out of it's own accord so we made an appointment to go see the doctor. he looked at me like i was crazy and told me that kids her age lose their teeth. she was a little over 5.5 at that time and i thought that was pretty early...especially for a kid that didn't get all of her teeth until pretty late...but kaiya never does anything on a regular time schedule so i guess this is just par for the course. she has been going at a rate of losing one tooth every month and a half from then on. the teeth start growing in pretty quickly as well. i was worried that she would lose them all and then we would have to wait ages for them to come back in, but that hasn't been the case. one of the biggest concerns i have with her losing her teeth is that she's going to swallow one of them. so far we have been lucky and that hasn't happened. the second loose tooth was very obvious. kaiya would push it in and out with her tongue and play with it all the time. i tried a couple of times to pull it out myself but it was hanging on so i couldn't. then one day kaiya was sitting next to me on the couch and i heard "crunch crunch crunch". i looked around because i knew i didn't give her anything to eat so i was trying to figure out where the crunching was coming from. i looked at her again and saw her looking at me and chewing on something. i realized she was chewing on her tooth so i set to work on trying to pry her jaws open and get the little thing out before she swallowed it. she put up a fight before finally spitting it out. the third tooth was the easiest one. it was really loose, and when i tried to pull it out, it came out right away. now we are on our fourth loose tooth and i'm starting to think her mouth is going to get really crowded with all of these adult teeth! so far they look like they are going to fit, but she has a VERY tiny little mouth...we shall see :)

first tooth gone!

she loved to put her finger in the empty space...

trying to figure out what's going on in her mouth

you can't tell me she doesn't know...

so this morning akaiya decided that she wanted to be "challenging". neither one of us do very well in the morning, so we try to keep them as peaceful and routine as possible. well lil miss thang woke up full of herself and decided she did not want to deal with anyone or anything. she started off by trying to dive off of the table that she sits on while i comb her hair - it takes forever to tame those curls and her bouncing all over the place does not make the job any easier. add in the very slippery goo that goes into her hair to make it manageable and you have a dangerous situation when this little girl decides she wants to make a break for it! so we resolved the hair issue with little to no injuries only to move on to breakfast. kaiya is not a big drinker - but usually in the morning she'll at least take a few good drinks to start off her day. well today she decided that she really didn't want her juice and instead of shaking her head no like usual, she chose to go all "crazy chicken wing" on me and slap the cup out of my hand, which sent it flying, and grape juice was EVERYWHERE! so instead of our usual routine which barely gets her out of the door on time, we had to change clothes, rush rush rush, and we still got her on the bus late... now generally i would be of the mind that she doesn't know any better, but when i look at her and she is smirking at me it's very hard to believe that she is completely innocent and doesn't know she is being a little snot! i almost think she didn't want to go to school today b/c she usually greets the bus driver with a big cheesy smile, but today she just stared at me with an intense glare and would not look at the bus driver no matter how much the woman talked to her... she's 6, is she supposed to have this much attitude?

last day of therapy

this morning akaiya had her last session of weekly therapy at the hospital. when she first started receiving services at Hope she was going to OT, ST, PT and Music. she was discharged from ST first, then OT, and today was our last visit with PT and Music therapist. we are very sad that our tuesday morning "parties" had to end, but we know we'll be seeing our friends at Hope soon :) akaiya really loved her sessions with these great ladies and learned a lot from everyone she worked with at Hope. Big thank yous to all the wonderful staff they have there :)

akaiya cheesing it up with jen

akaiya showing jen a lil love :)

standing and taking the shaker egg from julie

having a serious conversation with julie about the red egg shaker

the enternal battle...trying to keep her lil hands out of her mouth

we went to denver!

one of the best parts of our summer was our trip to denver for the SOFT conference. we always have a great time seeing everyone and we learn a lot from the different doctors and medical professionals. this year we got a lot of great tips from the feeding specialist about new things to try to encourage kaiya's eating. we also got some good information from a developmental ped. and seating specialist on what might work to make kaiya's chair more comfortable for her. as always the best part of conference is the families! we were able to see lots of people we had met in the past and also meet lots of new friends. here are a few of the pictures that i took this year...

Eating and gaining weight

one of the most common questions i hear when meeting new families is "does your child eat orally or are they tube fed?" well, akaiya is an oral eater. when she was first born she had a very weak suck and was not able to take much from a bottle so a ng tube was placed. after about a week her suck improved so the tube was removed. towards the end of her hospital stay akaiya had an incident with a possible bowl obstruction that caused them to switch to iv feeds only. when that was resolved we had to replace the ng tube because she had lost the small amount of progress she had gained with bottle feeding. when she came home she still had the ng tube placed. three days after we came home akaiya pulled the tube out and we never bothered getting it replaced. in the beginning akaiya needed to be fed every 3 hours. it took her around an hour to drink 2 oz of formula. we kept this routine up until she was 4 months old...it was exhausting! at 4 months old the doctor told us to let the poor girl get some sleep at night! so we fed her every three hours during the day and just when she woke up at night - much better! we were also told to try and start introducing baby foods. the doctor realized that this was earlier than usually recommended, but he figured she would take awhile to start eating and he thought the headstart would be beneficial to her. we started very slowly...less than a tablespoon of cereal mixed with her formula. it took a couple of months to get her willing to eat the cereal and thats when we started adding fruit to it. she seemed to like it better with the fruit so we started to increase the amount. by about 9 months we were trying to stick to a routine of cereal with fruit in the morning, meat with vegetable & fruit for lunch, and cereal with fruit for dinner - along with her bottles. here is an example of what kaiya was eating when she was about 1.5:
breakfast
1/4 cup oatmeal
1 jar stage 2 fruit
6 - 8 oz Alimentum formula
lunch
1 jar stage 2 meal
1 jar stage 2 fruit
6 oz Alimentum formula
dinner
1/4 cup oatmeal
1 jar stage 2 fruit
6 - 8 oz Alimentum formula
snacks
4 - 8 oz Alimentum formula
few bites of yogurt

like all kids akaiya had days where she didn't want anything, and she had days that she ate a whole lot - which made weight gain a real big issue in our house. as soon as i find the old records i plan on posting a graph that shows her weight over the years. i'll put down what i can remember off the top of my head right now:
birth - 5 lbs 1 oz, went down to 4 lbs 8 oz and then up to 5 lbs 7 oz when we left the hospital
2 mos - 7 lbs
1 year - 13 lbs
2 years - 19 lbs
3.5 years - 24 lbs, but then went back down to 19 lbs when she got RSV
4 years - 24 lbs
5 years - 25 lbs
6 years - 28 lbs

we've used various different products over the years to try and increase akaiya's weight - benecalorie, duocal, oil, doubling up on formula, and adding cream and cheese and other fatty foods to her meals. i used to really stress out about how small she was, but now i just realize that this is how she is, and as long as i'm doing my best to make sure she has adequate nutrition - she's going to be fine.

these days akaiya is eating pureed table foods. we are working towards getting her to eat more solid foods - it is a very slow process... she has the ability to chew and move the food around to the right place, she just doesn't have the desire to work that hard when she's eating. akaiya doesn't really have a "set" menu that she eats everyday like she did when she was younger but i will try to give an example of what she eats now.
breakfast
scrambled eggs, french toast, oatmeal, cream of wheat, pancakes - we usually try to give her fruit with all of her meals so she would have any one of those items and some kind of fruit.
lunch
chicken noodle/vegetable, spaghetti & meatballs, chili, the list is endless, pretty much anything - yesterday she ate mashed potatoes, turkey, gravy and applesauce
dinner
again we just puree whatever we are having for dinner or sometimes she gets oatmeal and fruit or yogurt

what she eats really depends on how willing of an eater she is that day. if she's eating really well i'll try new foods and textures with her. if not, then we stick to old favorites to make sure she's getting the most calories possible. akaiya doesn't really like to drink and she's very picky about what she is willing to drink. we usually try to keep a cup of juice around and offer it to her as much as possible. we also make sure that she's getting lots of high water foods (like all the fruit) so we can try to compensate for her lack of drinking.

Ortho Appointment and Therapy

this morning we had to wake up extra early to get to the hospital for an appointment with the orthopedic doctor. we saw him around 6 months ago or so and at that time he didn't seem to think anything needed to be done. kaiya's PT suggested getting baseline xrays done of her spine so that if in the future we thought her posture was becoming an issue we would know where she started from. well, the ortho didn't see a big problem with her spine but thought her hips were tight so he had those xrayed and wrote a spine xray on the order also but the tech didn't see it and when i mentioned it she said it wasn't there....oh bother :( so when i went back to him he said it wasn't a big deal and we would handle it when we see him in 4 - 6 months... we had PT right after all of this running around and the PT was shocked to hear that he didn't get the spinal xrays because that was the whole purpose of the visit. she specifically talked to him a couple of weeks ago about this issue and that's how the whole appointment came about...we will probably be back in next week getting some spinal xrays :)
on a better note, akaiya did really well during her PT session. we found out that next week will be her last session at the hospital - i'm still very sad that we won't be going back every week :( hopefully kaiya will miss them too and decide to progress a litte further so we can start back up. in the mean time i'm going to start trying to figure out how i can get something built that would simulate a light gait...

The First Blog

well, i have been talking about creating a website for akaiya for the past 4 years... i finally found a medium that was so easy to work with i felt bad not signing up :)

so to start off with i will introduce myself - i am kelly, akaiya's mom. so enough about me, let's get on to the purpose of this blog - akaiya :)

akaiya was born september 4, 2002. she weighed 5 lbs 1 oz. and was 18" long. because of her low birth weight and her unwillingness to eat she was placed in the NICU. 3 days after she was born she had several spells of apnea which prompted the hospital she was in to transfer her to a larger facility. akaiya spent the first month of her life in the NICU at Cook County Hospital in Chicago. during that month we were informed of her diagnosis of trisomy 18 and told that we could expect akaiya to pass away at anytime. akaiya had other plans apparently because she is still here with us 6 years later :)

while akaiya has been a relatively healthy little girl, she has had her issues over the years. she is an oral eater and it has been a stuggle at times to keep her eating enough to gain weight. she also battled reflux from the time she was 1 until she was 4 years old. we were giving her prevacid for the reflux, but as she got older she didn't seem to need it (this was determined very scientifically by forgetting the medicine at home when we went away for a weekend...) once we noticed that she didn't have any of the reflux symptoms without the medicine we decided to take her off of it and she has been fine ever since. akaiya is extremely delayed physically and mentally so she has been receiving therapy(PT, OT, DT, ST) since she was 2 months old. in the beginning the therapists would come to the home and provide services. after akaiya turned 3 she aged out of the early intervention program and started going to school to receive services. in addition to school therapy akaiya also started receiving therapy at the hospital when she was about 4.5. unfortunately these services will be ending soon :( akaiya's most pervasive issue has been constipation. we have tried many different remedies and have just come to realize that it is what it is and we deal with it as it comes. akaiya has only been hospitaized once (besides when she was first born), and this was for RSV when she was 3.5 years old. she spent a week in the hospital and has not had RSV again. other than that, like i said earlier, akaiya is a healthy little kid. she spends less time in the doctor's office than most kids i know. we have been very blessed to have such a happy little girl.

Akaiya when she was first born

Akaiya in her first Halloween costume - an angel