Saturday, December 27, 2008
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 :)
Saturday, December 20, 2008
Wednesday, December 17, 2008
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.
Sunday, December 14, 2008
no such luck.
but somehow the little princess always seems to get her point across :)
Friday, December 12, 2008
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 :(
Monday, December 1, 2008
this is what she looked like this afternoon. i'm thinking that she might have potential as a yoga instructor???
Friday, November 28, 2008
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.
Saturday, November 22, 2008
Monday, November 17, 2008
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 :)
Saturday, November 15, 2008
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.
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.
Wednesday, November 5, 2008
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 :)
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.
Monday, November 3, 2008
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.
Friday, October 31, 2008
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...
yelling like animal!
Wednesday, October 29, 2008
Saturday, October 25, 2008
Tuesday, October 21, 2008
Sunday, October 19, 2008
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...
Wednesday, October 8, 2008
Tuesday, October 7, 2008
Saturday, October 4, 2008
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...
Monday, September 29, 2008
Sunday, September 28, 2008
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...
Wednesday, September 24, 2008
Saturday, September 20, 2008
first tooth gone!
she loved to put her finger in the empty space...
Thursday, September 18, 2008
Tuesday, September 16, 2008
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
Monday, September 15, 2008
Wednesday, September 10, 2008
1/4 cup oatmeal
1 jar stage 2 fruit
6 - 8 oz Alimentum formula
1 jar stage 2 meal
1 jar stage 2 fruit
6 oz Alimentum formula
1/4 cup oatmeal
1 jar stage 2 fruit
6 - 8 oz Alimentum formula
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.
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.
chicken noodle/vegetable, spaghetti & meatballs, chili, the list is endless, pretty much anything - yesterday she ate mashed potatoes, turkey, gravy and applesauce
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.
Tuesday, September 9, 2008
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...
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.