Saturday, December 12, 2009

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.

Monday, November 2, 2009

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 ;)

Wednesday, October 14, 2009

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.

Sunday, September 27, 2009

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.

Saturday, September 26, 2009

cough cough, sneeze sneeze

akaiya hasn't been to school since tuesday. she started out with some congestion and it just kept getting worse. a little cough started on thursday, but it wasn't a productive cough. by friday her breathing really wasn't sounding good, so i called the doc for an appointment. we went today (saturday) and of course, she started sounding better.... sometimes i think kaiya misses her pediatrician and does what she can to get a visit. well....maybe not ;) so we visit the doc and she's coughing and sounding all horrible but the doc says her lungs sound good. she checks kaiya's ears and sees some yellowish fluid in one of them, but tells me just to watch her for fevers. apparently it's not infected yet - but i guess it could get there. so we're going to use an over the counter wax remover, and go back in 2 weeks for a cleaning. what is different about this lil sickness is that kaiya is still eating, so we're happy about that! she isn't really drinking at all tho, so we'll see how well mama can do with getting alternative sources of hydration into kaiya...the monster has been pretty sleepy, but still happy. she coughs and then laughs about it. crazy kid. as i type this i am watching her lay on the mat. she's starting to rub her ears. uh-oh...

Thursday, September 17, 2009

what a difference a snack makes

one of our constant battles is keeping weight on akaiya. she is a teeny tiny lil monster - and it's next to impossible to get/keep weight on her. or so we thought. akaiya got up to 30 pounds and then got sick a couple of months ago and went back down to 26. well, we've been struggling trying to get weight back on her. she seemed to hit a plateau at 28 pounds. i still don't see how it takes months to put on a pound, but 1 day to lose a couple...wish it were like that for me!

anyways...

several of akaiya's classmates need to have snack in the afternoon in addition to the morning snack so her teacher asked if i minded if kaiya had an afternoon snack. i said, "sure if you can get her to eat it." and i was sure that there was no way my kiddo was going to eat another snack... and i was wrong.

this past week several family members have commented on akaiya's weight. and i always drag my feet on getting out the scale because it never tells me what i want to hear... well, tonight we had a pleasant surprise. akaiya weighed in at a whopping 31 pounds, and it may actually be more b/c the scale we use generally is off about 2 pounds compared to the doctor's office scale. the last time she was weighed was about a month ago, and she was 28 lbs, so this is a pretty big jump for her.

i'm really happy that she's finally putting on some weight, but there definitely is part of me that worries about her getting really big. right now i can still carry her around and not hurt myself too badly. mama is definitely going to have to start getting into shape!

Sunday, September 13, 2009

little signs

i have been really busy lately with my new job and poor kaiya has been noticing that mommy is not devoting all of her time and attention to her. this weekend i made sure that i spent a ton of time showing my little princess how much i love her. well, apparently she has been working on some new tricks - or these are just old tricks that i haven't noticed b/c i've been so preoccupied.

the first i noticed while i was feeding her. i have major guilt over meal times because i know that kaiya should be concentrating on her food, and not playing with toys while she eats. but she eats better when there are toys to play with. and she needs to be fattened up a bit, so sorry speech therapists, she's going to play while she eats. so anyway, i was feeding her and thinking the guilty thoughts when i decided to see how "into" eating she was. the toy was right in front of her and she was playing away. i just put some food on her spoon and held it out, within reach of her mouth, but not prodding her mouth with it. well, she turned her little head, opened her mouth, and then realized i wasn't moving the spoon. so she leaned forward and took the bite herself. it made the meal a bit longer than we're used to...but i kept at it just to see if she would keep doing it. so apparently the toys aren't totally distracting her from eating, she still wants the food and she proved it right???

and then we have our "getting ready" ritual. she usually helps me put her arms and legs through, but i was never sure if she was doing that on purpose or if i was just imagining it. well today she proved to me that she was doing it on purpose. i was about to put her shirt on her and the phone rang. i was momentarily distracted b/c i wanted to listen to the machine to see if i should pick up the phone. kaiya apparently wanted that shirt on b/c she ducked her head down, leaned forward, and pushed up through the hole. i was kind of shocked so we got tangled for a bit...but then i was very impressed!

they are little things to most people - but to me these are huge signs that she is learning. and i love it!

Saturday, September 12, 2009

birthday pix

I didn't take many, but here are some pix from akaiya's birthday party.


Friday, September 4, 2009

Happy Birthday

happy birthday to you. happy birthday to you. happy birthday dear akaiyaaaaaa... happy birthday to you.


my monster turns 7 today. many thoughts run through my head when i sit down and really think of what an accomplishment this is for her. the first is, of course, "how can i be old enough to have a 7 year old?!?!?" hahaha...

but really, time does fly by when you're having fun. and we love to have fun.

happy birthday to my itty bitty. thank you for your patience while i try to figure this whole T18 thing out. thank you for being the one that can always make me smile, no matter what. thank you for those face splitting grins morning, noon and night. thank you for the giggles that are like music to my ears. thank you for being an inspiration to me, and to so many others. thank you for your strength and your perseverance in spite of a diagnosis that just plain sucks. thank you for giving me the knowledge, impetus and courage to pursue a career that i love. thank you for teaching me, our family, and our friends that communication goes so much deeper than the words that come out of your mouth. you've accomplished more in your 7 years here than many people do in their lifetimes, and i'm sure you'll continue to do great things. life with you always brings something new - sometimes good, sometimes bad, but it's definitely an adventure that i never want to end.

your mommy loves you so much. you really are a miracle.

happy birthday baby...happy birthday.

Saturday, August 29, 2009

time flies


my baby started 2nd grade the other day...2nd grade. when she was born we were told repeatedly that she would be gone very soon - and in 1 week she will be 7 years old. i actually had heart palpitations the other day thinking about her age, because that reminds me of how quickly i am aging!

it was a rainy, icky day. hard to wake up. well, at least it was hard for mama to wake up. kaiya was up and at em bright and early. she was talking and giggling in her bed like she knew it was finally a school day and she couldn't wait to go back. kaiya has the same teacher and aides that she has had for the past couple of years, which is a very good thing. they know all of her quirky little behaviors and kaiya absolutely loves them! kaiya is the only girl in her class this year, which i'm sure she loves! her little friend from last year doesn't go to the same school anymore so i'm sure she is missing him a bit, but she'll make more friends ;)

i still can't believe my monster is a big 2nd grader! (with lots of missing teeth!)

Sunday, August 23, 2009

request

it is with a sad heart that we request some warm wishes for our friend brianna. she has been having some very serious medical issues lately, and it looks as if they are not going to improve. her story can be found here:

Brianna

Tuesday, August 11, 2009

life wouldn't be nearly as interesting without akaiya

NOTE: This is another blog about poop. If you have a weak stomach, or a distinct dislike for defecation you may want to skip this one.

so, as you may or may not know, kaiya's biggest issue is constipation. the kiddo always has trouble pushing out the poos...and it's only made more difficult because she doesn't like to drink and has a love for bananas. the other day i realized that i would have to give her some help, so i gave her an enema. we waited for awhile...and nothing happened. she fell asleep after pushing for awhile, so i left her alone, thinking maybe during the night she would get some relief. well, we woke up in the morning and there weren't any presents waiting for me, so i gave her another enema (yes the box says they are for occasional use...but hey, there are different rules in trisomy-land right?) so she pushed and pushed, and nothing came out. i realized i had to go to plan e. e for extraction...yuk. after my first round with this method kaiya started being able to finish on her own. she went, and went, and went. my little girl that was starting to look like her torso was filling out, all of a sudden started looking like a victim of starvation. akaiya was literally full of sh** - well she was, before she started expelling it like crazy. i can not believe how much came out of her, i can not believe how bloated she was, and i can not believe how skinny she is now :(
so, i decided to give her a bath. i thought it would relax her, maybe the warm water would make her feel a little bit better. i was looking at her stomach while i was washing her hair - it looked odd. i could see the abdominal muscles clearly...and her stomach was caved inward. right as the thought went through my mind, "there is no way she can have any more poop inside of her" something floated by...i was confused at first, until i looked down towards her rear end, where i saw a big brown pile. oh man! so we quickly got out of the tub, cleaned off in the shower, and went to get dressed. how would i entertain myself without these crazy bloopers?

also something of a noteworthy event - akaiya had her first mcdonalds cheeseburger. i had forgotten to bring food for her lunch, and i was looking for an excuse to have one of their fountain cokes (what do they put into those things? it doesn't taste like regular coca-cola.) so i decided to get her a cheeseburger happy meal. she seemed to really like it! of course i had to puree it, which was kind of gross to be honest, but she didn't mind that at all. so now kaiya has officially joined the rest of america in her love for fast food ;)

Sunday, July 26, 2009

the girlz take a road trip

as we were making plans to attend the SOFT conference several months ago, we realized that flying out there was going to be WAYYY too expensive. so after much deliberation, akaiya and i decided that we would drive to roanoke, virginia. now, when we were making our plans we said that we would take it slow, enjoy the sights, maybe stop and climb a mountain or two. life got in the way, mommy had to be orientated to her new job, doctor's appts had to be taken...so we ended up leaving on wednesday at 4pm for what mapquest called an 11.5 hour drive. ROAD TRIP!!!

wednesday - leave for roanoke, virginia from tinley park (mommy's doctor's office actually...) at 4 pm. realize that we forgot to go to the bank...drive back to orland...then leave again. akaiya was so sleepy from trying to poo all day that she was snoozing and missing out on the very exciting moments of our first real road trip together. don't worry sweetie, mommy partied enough for the both of us ;) songs were being sung, the gps was being programmed (and reprogrammed), a monster drink was being kept cool so mommy could drink it later. life was good. then it started raining. just a light mist, no big deal, mommy can drive in this. so as we were traveling through indiana, akaiya realized that she was missing the awesome road trip party, and decided to wake up. the tunes were cranked up, both of us were singing (although akaiya refused to sing the songs that were playing, opting instead for her original composition...) mommy decided that the commercials are all wrong - there really isn't anything more than corn in indiana - sorry hoosiers. so as we rolled into kentucky it started getting dark, and it was still raining, and all of a sudden there was a lot of topography...which continued increasing as we drove farther. by the time we got to west virginia it was pitch black. raining. and we were driving in mountains. mommy has never driven in the mountains before - and it's an experience. picture driving in outer space - pure black skies, you don't know where you are, and you're twisting around and up and down...that pretty much covers it. then add in the fear that you may go tumbling down a cliff at any time...whooo hooo...

thursday - akaiya and i pulled into the hotel (finally) after driving for 12 hours. it was 5:30 am virginia time. we couldn't believe we actually made it. and we needed our beds quickly. surprisingly 5:30 am is not a busy time for the front desk people so they were able to get us checked in and up to our room in a jiffy. kaiya just curled up on her bed and passed out...mommy had to unpack a few things and then was also out like a light. well, tried to be out like a light, but monster is not a friendly drink so sleepyland was hard to find, and i didn't get to visit for very long :( we got up at around 9, registered, talked with a lot of friends,and went off to clinics. akaiya saw the dentist and he was impressed with her gums. he also told us that saliva is a dentists best friend (good thing kaiya has a lot of it!) and he also told us that her 6 year molars are not in yet. uh oh. there isn't any more room in that little mouth for more teeth! we'll have to see what happens if they do decide to come in. the ENT we saw told us that kaiya's ears look ok. she has small canals, there isn't any fluid, but she does have a lot of wax build up in her left ear. she always rubs that ear too...she told us to have an ENT clean it out if kaiya ever gets sedated again. we had a visit with a nutritionist that told us kaiya's BMI was about a 12 and it should be at least a 13 or 14 so we need to get her beefed up a bit. she gave us lots of free samples to take home and try. yum ;) our last visit was to a PT. we had a lot of fun with her. kaiya has been trying to sit up on her own and mommy needed some ideas to get the kiddo stronger so she could accomplish her goal. sure enough, the PT put kaiya on her side, and up she went with a slight touch at her knee. what a stinker...we'll have to practice the movement so kaiya can learn how to get up by herself. we also looked at some new tape and wheelchair ideas.

thursday night ended with the welcome dinner. lots of tasty foods, meeting new friends and reconnecting with old ones, and great entertainment. especially melissa on the dance floor - "..somebody call 9-1-1..." ahahahahahhahahaha. kaiya spent most of the night being passed from one person to another - i had to search her out several times to make sure no one ran off with her! the conference committee did something really amazing. they rolled out a red carpet and announced the kids names over a loudspeaker. people were crowded at the end of the carpet with their cameras, just like the paparazzi. when the kids got to the end they got a trophy. akaiya loved her trophy so much she didn't want to let it go. when one of our friends tried to take it and look at it she actually yelled and gave her a mean look - and of course would not let go. we were supposed to stay downstairs and talk with friends, but we needed some sleep so we snuck upstairs into our beds.

friday - workshop day. we were up and at em pretty early.....well, we tried to be ;) went down to breakfast at around 8:45 and got filled up. our first workshop was all about SSI, medicaid, and early intervention. it was a lot of information in a very short time. good resources though. kaiya played on the floor with her buddy alexis. alexis is a fellow chicagoan. she has t13 and is so very cute and playful! kaiya likes to watch her, until alexis decides to pull her hair - then kaiya has to take some defensive action. our second workshop was PT. got an interesting idea for a swimming pool flotation device. there was a lunch break and mommy decided to go to the store and pick up some much needed supplies. mommy forgot to take the time difference into consideration and got back to the hotel much later than we wanted to...actually missed the 3rd session of workshops. whoops! kaiya was really hungry at this point so mommy took a lil time to fill the monster up. the last workshop we went to was the sibling panel. it is always amazing to me to see these kids open up about what it is like having a brother or sister with trisomy. kaiya spent friday night playing with some friends in child care. mom went out to dinner with a couple of friends. we had mexican food (yum!) and it was excellent. it was a big fun parents night out ;) i picked kaiya up at 11:30 and we went right to bed.

saturday - picnic day. we were up early for breakfast and the SOFT business meeting. mommy ran for the board this year, and didn't make it. better luck next year ;) we watched the annual video, and of course there wasn't a dry eye in the house. it was a really amazing video. the funny thing was a lot of people thought that the many pictures of annabel were actually pictures of kaiya. the girls do have a lot of similarities. both pretty little princesses ;) we sat and talked with friends and then made the drive to the mill mountain star. mommy is not good with altitude at all. and the drive up the mountain was...an adventure. the picnic site was very interesting. you could look out and see that you were definitely on the top of a mountain. it was a little dizzying! i was a little afraid b/c there weren't many flat areas. i had a big fear of kaiya's wheelchair flying down the mountain! while i was sitting with kaiya, i noticed that she looked different. at first i couldn't figure it out, but then i realized she had lost another tooth. the tooth was loose, but i didn't think it was going to fall out this soon. i searched all over her and all over her chair - no tooth...i'm hoping that it is laying somewhere on the mountain, and not in kaiya's intestines. akaiya spent a lot of time with our friend gerry. her daughter is named leilani and she is 9 years old. leilani has T18 too and makes fun noises just like kaiya. we met gerry and her family in chicago in 2006, and mommy was SO glad to be able to reconnect with them again! gerry is hilarious, and just an all around great person. the balloon release was an emotional event as always. everyone was really close together this year which was nice. it was also awesome seeing the balloons float off of the mountain. we took our annual picture of the kids, and then went home. kaiya and i took a little rest in our room and then it was back downstairs for the auction. we didn't buy anything, but it seemed like the auction did very well. after the auction we had an annual meeting of the "pub moms"..lol... some of us moms like to get together, have a few cocktails, and talk about anything and everything. kaiya was lucky enough to be able to stay with leilani and her nurse. kaiya and leilani actually slept in the same bed, which was SUPER CUTE! when i get my camera back i will have to post the pictures.

sunday - kaiya and i didn't wake up early enough to go to breakfast...i decided to pack up our stuff instead. when we went downstairs we chatted with some of the families that were waiting for their rides to the airport. it's always so sad to say goodbye to everyone. we were actually on the road pretty early. and of course it started to rain. gotta love driving down a mountain in the rain ;) the ride home was pretty uneventful. ohio is kind of boring to drive through - and indiana is even worse. i did learn that kaiya really likes pintos and cheese from taco bell. i forgot to bring her lunch in with me, so i just ordered something that looked mushy enough for her to eat. it was funny watching her chewing on the cheesy bits ;)


july was a really busy month for us. kaiya had surgery, she had school, she had tons of doctor's appointments. we had family parties, mommy went on vacation (without kaiya! uh oh!) , we went to virginia, and then we spent a week with nana and papa in indiana. it's nice to be back home, even though the house is an absolute disaster. kaiya is used to having constant one on one attention - and she is being an absolute bear now that she is not getting that anymore. hopefully we will be able to fall back into our normal routine, whatever that is :)

Wednesday, July 8, 2009

post op appointment

akaiya had her post op appointment yesterday morning. it did not go as well as we would have liked. her left eye where they repaired the exotropia looks great. he was really happy with that. the right eye that had the ptosis repair fell a little bit. we're hoping that it just looks that way because of swelling...fingers are crossed. she also may have rubbed her eye and pulled a stitch. ugh. other than that akaiya is doing well after surgery. i think he may have implanted another stomach in the kid because she has been eating like a truck driver! i am amazed at the amount of food this kid has been shoveling in...and she is demanding it! she yells and has her hands to her mouth until someone is filling it with something. we're hoping to put some massive weight on her!



i had to use akaiya's knee immobilizers on her arms to keep her hands away from her eyes, especially after putting medicine in...


i think her pacifier says it all...

the two pics above this one were from the day after surgery...this one is from 5 days after surgery. her incision is healing slowly but surely. and hopefully the swelling will go down soon. she scabbed up her chin by rubbing it on a rubber mat. swollen bloodshot eyes, missing teeth, scabby chin...it's amazing i haven't been questioned by anyone while we're out and about!

giggles

kaiya is a very happy kid. anybody who wants to say trisomy kids have no quality of life just need to spend a day with my monster ;) i usually play music and sing to her while i feed her. she always thinks it's amusing, but the other day she was just cracking up. by the time i got the video going she was almost out of breath because she was laughing so hard. does this mean that my singing is really awful???


video

cool new product

akaiya still uses a pacifier...it's probably a habit i should try to break, but every girl deserves her vices ;)

so her new bad habit is chewing through the pacifier. she get's a new one, and a couple of days later she's got nasty holes in it. so i've been on the hunt for something new. she likes the pacifier shape, so using chewy tubes or other things just wasn't working. well, i was shopping in wal-mart the other day (buying more pacifiers) and saw this new product. it's call the ortho-pro teether and it's made by playtex (should i charge a fee for this lil commercial???) it's shaped like a pacifier, but it's made out of harder silicone or rubber. kaiya actually likes it. she's not ready to switch to this permanently...but she does use them which is awesome. maybe i won't have to buy a new pack of pacifiers every week!

here are some pix of them...

Thursday, July 2, 2009

surgery

akaiya had surgery this morning. we had to wake up extremely early to get to the hospital by 6:30 am...momma is definitely not a morning person - but kaiya was already awake in her bed and ready to get the morning over with! we got to the hospital and were escorted into a small room so akaiya could change into her gown and little socks. of course the nurses were expecting a 6 year old sized kid, not my teeny tiny monster, so there was some switching out of gowns... after kaiya got all comfy in her bed with the tv playing some disney channel, she decided to take a lil nap. of course, while she was napping the doc decided to come in and draw on her head...don't want to do the wrong procedure to the wrong eye!





we were asked some questions by nurses and the anesthesiologist, and then at about 8:25 they wheeled my lil princess away. her dad and i sat in the waiting room watching oprah and listening to all of the other families fret about their loved ones. we were told that the surgery would take about an hour and fifteen minutes. at around 9:25 a nurse came in and said that kaiya's surgery started at 8:50. we were pleasantly surprised when the surgeon came in around 9:40 and said kaiya was finished. only one parent was allowed to go back into what they call phase I of recovery...so of course i went ;) on the way there the surgeon was very happy with how well everything went. he said kaiya had no problems at all during surgery, and everything worked out. he did warn me that her right eye might not close all the way, especially right away, which is why he have eye meds right now. kaiya was looking pretty beat up. i was under the impression that she was not going to be cut, that all the work would be done under the eyelids - i was wrong. her right eye lid has a lil cut in the crease. so i walk back and see my monster passed out on her bed, with her right eye not quite closed, and cut. and her left eye closed, with blood on it...and i asked myself why did i do this to her? the nurse was asking me questions about her and probably telling me things...but i just kept staring at my kiddo b/c she looked like an accident victim. the nurse let me know that if kaiya woke up and drank a little bit, we could leave directly from phase I of recovery and not have to go to phase II. so she started working on waking kaiya up. it was kind of funny b/c when i touched kaiya she just slept on...but when this nurse touched her she squished up her lil face and turned away. after bugging the lil sleeper for about 15 minutes we got her to wake up. and the next challenge began - trying to keep her from rubbing her eyes...when all she wants to do is rub her eyes. let the circus commence! it started with both the nurse and i holding a hand, while trying to get her to sit up...and then the nurse wanted me to give kaiya some juice (hahahahaha) i'm thinking in my head, this woman is crazy! who wants to eat or drink anything right when they wake up from surgery? but i gave it the ol' college try. and failed. so by now kaiya is getting really squirmy. she wants to rub her eyes, she's being held down, but also being sat up...she starts bouncing and swiping at anything possible. the nurse called over another nurse to help remove kaiya's iv. kaiya was not making it easy, and i don't blame her b/c this nurse was tearing at the tape like there wasn't a tiny person under there. so between the 3 of us we managed to hold her down and get the iv out without any eye rubbing..almost. kaiya's dad was invited to come back so we could change her into her clothes and take her home (after i explained that kaiya wasn't a big drinker anyway so she probably wasn't going to take anything from that strange cup.) imagine my surprise when we got in the car and realized we would be home by 11 am! we were warned that kaiya probably wouldn't want to eat, and would be really sleepy all day...of course the lil monster had to prove them wrong. she came home, had a bowl of cereal and smiled and giggled at us. she took a lil nap, and got up and ate another bowl of cereal (they said to keep her diet bland...) and she has been playing ever since. this kid is my own lil superstar!

in the car on the way home...her hand was tied down to keep her from rubbing her eyes
kaiya was not too happy to have her hand restrained!

happy to be back home with her toys ;)close up of the "damage"...you can see the incision above her right eye, and see how the left eye is just a little red on the outer corner. both eyes are swollen.
concentrating on her toys. i wonder if they look different???

thank you to everyone for the well wishes and the warm thoughts!

lost teeth

i finally took the pix of kaiya's toothlessness (is that a word???) off of my camera. she is looking pretty silly with her two top teeth gone! she likes to stick her tongue in the hole which can result in A LOT of drooling...ewww. i can already see little white spots where her "big girl" teeth are coming through. hopefully she will slow down on losing her teeth for awhile.





akaiya always has sassy hair things for her wild curls. here she is wearing her 4th of july barrettes. i think she loves them!


Wednesday, July 1, 2009

tomorrow morning

so we have to arrive at the hospital tomorrow morning at 6:30 am. it is midnight and i can not sleep...ugh. kaiya is not allowed to have any food after midnight - and only clear liquids till 4:30 am...after that, nothing at all. she had dinner at 6 and then i tried to feed her again at 10 and she looked at me like i was crazy. she just wanted to go to bed and her mean old mom was trying to feed her yet again....so she's sleeping, and with any luck will probably sleep on the car ride to the hospital tomorrow too. 6 am is pretty early for her to be getting up these days. this is kaiya's first surgery so i'm thinking that's what has me so nervous. i will post an update after the surgery.

Saturday, June 27, 2009

it's getting closer

akaiya will be getting surgery on her eyes this thursday (as long as she remains healthy). we have been going back and forth on repairing her ptosis for about 4 years now...we wanted it, the doc didn't really think it was necessary...now he agrees that it needs to be fixed. i will write down what is in his letter to akaiya's pediatrician so i don't mess up any of the details of what is happening.

...Congenital ptosis; exotropia. Fortunately no occlusive amblyopia or other functional ocular deficits were observed in association with this. This degree of ptosis definitely impairs upper visual field use. Ptosis surgery (levator resection) and exotropia surgery (lateral rectus recession) is therefore scheduled for July 2...

obviously she will be under anesthesia, which makes mommy very nervous! surgery is only supposed to last 45 minutes and he said that she will be able to return to school on monday. if you have a chance please send some happy thoughts our way that day.

kaiya currently looks like she entered a boxing match - and lost. one of her top front teeth is still hanging on by a thread. it's actually sitting crooked in the center of her mouth. she was outside for about 5 minutes last night, but it was enough time for those evil mosquitos to get to her. she has pretty severe reactions to the bites. she got bit on her right temple so that is all swollen, and she also got bitten on the right side of her neck right under the ear so that has a big old swollen welt...poor kid :( she's pretty itchy so we're going the benedryl route to see if that helps.

Monday, June 22, 2009

....another one bites the dust...

so one of the front teeth that was loose finally fell out. kaiya was hanging out with her aunt and cousins for the night and when mommy came in (at midnight...) everyone was scrambling around on the floor looking for something. when i said hi, kaiya looked at me and smiled so i could see the big hole where her tooth used to live. the tooth was finally located (whew..she didn't swallow it!) now we're just waiting for the other top front tooth to go. it's already moved over a bit so that it looks like it's directly in the middle of her mouth. she looks pretty silly right now...mommy will post pics when she gets over how goofy her little girl looks ;) i keep telling her not to smile, but she's so sassy she's been smiling even more (if that's even possible...)

apparently kaiya thinks that she's a big girl now too b/c she hasn't taken a nap in the past couple of days. usually she's my sleeping partner, but now she's too busy playing around to take a nap.

she's also on a huge eating kick (YAY!) i have added another meal to her day so now she get's breakfast, snack, lunch, dinner, and fourthmeal (thank you taco bell for the invention of that little phrase). hopefully she starts packing on some pounds. it's finally summer here and she needs some meat on her legs to look good in all these dresses and skirts ;)

Tuesday, June 16, 2009

all i want for christmas is my two front teeth...

well, maybe it's a little early to sing that song, but kaiya's two top front teeth are loose. very loose. kaiya has already lost her four bottom front teeth - and now she's going to lose the top two. the kid is going to look hilarious! at least the bottom four started to grow in quickly, although they stopped growing at about halfway in... her new favorite activity is to play with the loosest tooth with her tongue. she pushes it wayyyy out, and then sucks it back in - it's really gross, but she is entertained ;)

some other things that are going on...kaiya finished school last week. she will start summer school in a week and a half. kaiya's mommy also finished school - graduated in fact - and got a really amazing job that i can't wait to begin! so there will be a lot of change happening in our house, but it's all for the better ;)


Sunday, June 7, 2009

videos

i was recently reminded of a couple of videos of akaiya that are posted on youtube. they are both around 2 years old - so they aren't the most up to date, but still cute ;)

the first one is of kaiya eating a cheeto. kaiya doesn't put many food items into her mouth on her own, cheetos are one of the few food items she likes enough to feed herself. cheetos and marshmallow peeps - junkfood. yeah, she's definitely my kid!




the next video shows akaiya doing some talking. lots of ya ya ya, ga ga ga, and some typical kaiya yells in there too ;) mommy forgot to rotate the video before it was uploaded so you might have to turn your head or the computer...whatever works best for you ;)

Wednesday, June 3, 2009

am i being too sensitive

the other day i had an interaction that left me feeling slightly ticked off. i was standing at the end of the driveway waiting for akaiya's bus to pull up and a neighbor was walking out of her house to get her mail. she said hi and asked me how akaiya liked school. i told her she loved it and figured that was that. well she goes on to say "oh i'm sure she does. it's so wonderful that they have something like that for her, the poor thing." and i'm not one to be easily offended - trust me - i have very thick skin. but for some reason this just put me on edge. and i still haven't been able to forget it. the poor thing? really?!? is that what she is? i think kaiya has a very full life. she has a large family that adores her. she has teachers and therapists that dote on her every day. she has made friends in her class (and even a boyfriend...lol). everywhere we go people are drawn to her and she makes them smile. how can you look at someone like that and say "the poor thing" ? i don't ever look at kaiya and pity her - quite the opposite. this kid is living the life! she has everyone wrapped around her little finger willing to entertain her.

instead i pity the next-door neighbor, for not having an open enough mind to see that my daughter is a person too.

Friday, May 22, 2009

sweet girl

there are days where kaiya shows me that she definitely knows who i am and that she loves me. today was definitely one of those days ;)

mama has been pretty sick the past couple of days. high fevers, sore throat, ears...general yuckiness. so when mama is sick she tries her hardest to stay away from kaiya so she doesn't catch it too. this is made pretty difficult when daddy, nana, and papa are all out of town and unable to help out with kaiya! so kaiya has been spending a lot of time on her mat playing with her toys - with limited contact from the mommy. it's worked out okay b/c she has been in school - but today she had an institute day so she was at home all day with mama. we went to the doctor to figure out what the heck is going on and got a diagnosis of strep (oh hurray...)

the doc took one look at my throat and said "ewww, yeah, that's strep." i wanted to ask him, "is eww a medical term doctor?" so obviously i had to hold kaiya to get her in and out of the car. and every time i picked her up she grabbed on and didn't want to let go when i put her in the stroller or her seat. i just wanted to give her a big squish - but i don't want her to have this sickness so i held back. just now she creeped off of her mat and got all the way across the room to the couch i'm sitting on and stared up at me and giggled. i could just tell that she was so proud that she made it, and she wanted to play. the poor thing probably has no idea why mommy isn't giving her the quality time she is used to :(

i put her back on her mat b/c the wood floor really is chilly. she is staring me down with those big brown eyes.

soon we'll play baby girl. soon ;)

Sunday, May 10, 2009

life as usual

" no gnews is good gnews with gary gnu..." a quote from a silly show i used to watch when i was younger that seems appropriate :)

kaiya has been doing well. she's eating great, gaining some weight, and back to her silly giggly self. we've been enjoying the warmer weather - and hoping that it stays with us!

today kaiya got a much needed haircut. i gave her the last one she had (6 months ago?) and didn't really do that great of a job...so i finally let nana in to repair the damage. kaiya is barely tolerant of people messing with her hair, so haircuts are usually filled with lots of flailing and sometimes crying... her hair looks much better now thanks to nana!




yelling because she's not too happy with the process...



being a stinker and sticking her tongue out at me!



" I DON'T LIKE MY HAIRCUT!!!"

the curls that were cut off...


Tuesday, April 21, 2009

beware! this post is about bodily functions...if you have a weak stomach, you may want to skip it!

even though it is gross i feel the need to talk about this. poop. with akaiya, our biggest issue is poop. or rather the lack of poop. she eats a lot of food, fights us with drinking, and i think that is why it is so difficult for her to poop. so we'll take today. she woke up with what we affectionately call "poo balls". not a lot, just enough to smell :( and then her report from school said she had 2 bm's - 1 regular and one small. then she had another one when she got home - a regular (although, what the heck is regular anyway?!?) she was pushing and pushing like she was very constipated. she managed to get out what i thought was a good sized poo. but it was hard. and i saw that she still had more in there. so we gave her an enema...and something came out of her that looked way to big to come out of that little body - yet i still could feel more poo in her belly. she's really skinny. really skinny right now b/c of the recent weight loss. so you can see the lumps in her intestine when she needs to go. so 10 minutes later - another really large deposit was made in her diaper. i have NO idea how she gets these things out. it is so unreal to me that i have almost (on more than one occasion) had the bad taste to photograph it and post the pic...i don't know where all of this stuff hides. i'm beginning to think that kaiya is made up of poo...

sorry for the really graphic post...but well, it is what it is. this is one of the goofy themes in the trisomy fun park ;)

Friday, April 17, 2009

bring on the noise

my noise maker is back. i never thought i would be happy to hear "aaaaaahhhhhhh eeeeeeeeeeee eh eh eh eh", but after almost a week of silence, it's a wonderful sound. kaiya has gone to school and done well according to her teacher. they definitely noticed her weight loss :( we will be working overtime to gain those pounds back! she hasn't slept at school, but when she gets home she is out like a light! she wakes up for a big meal, and then right back to sleep. i hope that means she growing!
All full after eating her dinner
Big smiles because mom sang the "you did it!" song...
Akaiya's little feet, and the socks that should be on them
Full tummy after a big long day makes for a sleepy girl :)

Thursday, April 16, 2009

doing better

well, the peanut seems to be doing MUCH better. she hasn't had any nasty diapers or vomiting and her appetite has increased hugely! she looks like a little skeleton b/c she lost so much weight, but hopefully we will start packing the pounds back on soon. she went back to school today and shockingly, managed to stay awake the whole day. she was probably just excited to see all of her friends, especially her BFF. she didn't take a long nap after school today, but i think that is because she was hungry. i went to get her out of her bed and actually heard her stomach growling! she had an early dinner and we hung out outside for awhile. i put her on her mat to play, and that's when i was sure she felt better. she kept taking her socks off! even though her feet are icy cold, she does not want to wear her socks!

Monday, April 13, 2009

yuck!

just when i thought kaiya was getting better - she hurls all over the place :(

so after 3.5 days of puking and pooping, mommy finally relented and took kaiya to see her doctor. i think kaiya just likes to visit these people every once in awhile! she's been VERY quiet, which is kind of scary in an of itself...but when she saw her doctor she started talking at him :)

we learned that she has lost a lot of weight - a little over 3lbs to be exact :(

and we also learned that she has rotovirus. and he says she's going to have it for at least 10 - 12 days...ugh. i told him that she can't afford to lose that much weight, and he agreed. there isn't really anything he can do though. he prescribed ondansetron to help with the nausea, and he said that it would make her thirsty. so i'll keep trying to get food into her, and try to keep up with her nasty stinky diapers. YUCK!

kaiya is still pretty sleepy, although she did play with some of her toys today. she won't be going to school for probably the rest of the week.

Sunday, April 12, 2009

happy easter

hope everyone is having a wonderful bunny day :)

akaiya actually ate all of her breakfast today. of course it wasn't the amount that she usually eats, and it was made really soft, but she finished the bowl so we celebrated. she stayed awake longer today too. since she was doing so well, we planned on going to a family easter party - until she pooped on me :( we both had our baths and as i was lugging her down the stairs i started to smell somthing foul. i got her to her room and there was a little bit of very wet yucky smelling stuff on her towel, the clothes i was holding, and the clothes i was wearing. i figured if she was still having diarrhea she wasn't going to be up to travelling around. she layed on her mat and fell asleep before i could try getting lunch into her. looks like she'll be staying home from school tomorrow.

Saturday, April 11, 2009

sleepy saturday

akaiya seems better today. well, she's not puking so that's better. she has drank a lot (for her at least...) and she has eaten a little bit. she's still sleeping A LOT. she was constipated so i helped her get that problem solved today... and since then her diapers have had the worst smell i've ever had the displeasure to experience...maybe it's the sickness coming out that way? and i haven't had a chance to weigh her but i can tell she's lost weight. why does it take months to put on but only hours to take off???

Friday, April 10, 2009

not so good friday

kaiya woke up today with a smile as usual, but i noticed that she felt a little warm. i thought that maybe she was still toasty from being snuggled in her blankets and put her in the chair to have some breakfast. she drank pretty willingly - which for her is almost unheard of so i should have known something wasn't right... she refused to eat her breakfast. i begged and pleaded with her for an hour and only got about 10 bites in. so we snuggled for awhile, and she slept. i put her on her mat to play, and she slept. she got up to play for a couple of minutes, and then she slept. lunchtime came and she had a little bit of her spaghetti o's and applesauce...and then she slept. she doesn't have any signs that would let me know exactly what is wrong with her, she's just a little warm, sleeping, and not eating well. here's to hoping the little princess perks up in time to see the easter bunny on sunday :)



late night update: kaiya has started vomiting - poor little thing :( kaiya and i have this puking thing down by now. she makes the "i'm going to hurl" noise, i run her to the bathroom, and she let's loose in the sink. she even makes time to give me dirty looks in between vomiting up whatever little things i've been able to get into her... i hope she's not getting the flu that was going around the schools a couple weeks ago! we just got to 30 pounds and we'd like to keep her there.

Monday, March 23, 2009

kisses

akaiya gets a lot of kisses and she loves it. there were times when it seemed like she was trying to give us kisses back, so i decided to start trying to teach her what a kiss was. she finally started to "get it" ...a little...and would pucker her lips like she was going to give a kiss, then lose the pucker and make the little kiss sound with her tongue. it's really cute b/c sometimes she can coordinate all the movements and it's like she's giving kisses, but mostly it's two separate actions - and that's really sweet too :) well this morning she was on her mat playing and i heard the kiss sound, but she was hiding her mouth with her hand. i finally got a good look at what she was doing and realized she was kissing her hand! i don't know if she was doing it b/c i always kiss her hands, or if she was just using what was available... so now i'm going to work on getting her to blow kisses :)

Sunday, March 22, 2009

mini-conference

illinois SOFT had a mini-conference this weekend. it was really great to see our old friends, and we got to meet some new ones as well. it was nice to be able to meet some people that i had talked to over the internet, but never met in person :) akaiya had a good time. she loves to be around people. there were several speakers that were really informative and tolerant of the loud kiddos ;) i'm always so appreciative that we have gatherings like this. it's wonderful to be able to bond with parents that are in the same situation as you.

Monday, March 16, 2009

fun times

akaiya went to her first south side irish parade this weekend. she seemed to like the loud horns and marching bands. her favorite part was probably watching everyone's dogs walk by. she seemed really entertained by the irish wolf hounds.


Saturday, March 7, 2009

surgery

akaiya had an appointment with her opthamologist yesterday. i was unable to take her so my mother was kind enough to bring her to the doctor. we have been talking about doing surgery on her right eye for ptosis for awhile. when she was younger he put it off b/c she was so small. then when she got older he told us that b/c of her condition it would be an elective surgery. i don't know what changed his mind (maybe b/c he walked into the office and the first thing he said was "now what's going on with this droopy eyed girl?") so kaiya will be going under the knife. i have mixed feelings about the whole thing...i know that her vision is really important, and i know that this is a very minor surgery. i just don't like the idea that my baby will be in any kind of pain :( we'll probably schedule the surgery for the beginning of june. i want to let her finish out the school year first.

Thursday, March 5, 2009

so close!

kaiya was hanging out on her mat today - just rolling around, giggling, and being her happy little self. one of her favorite games is to try and get into a sitting position, and when she's half-way there, she rocks back and forth. she gets attention from everyone in the room b/c we start trying to encourage her to go all the way into the sitting position. the lil princess is an attention hog so you can see why this would be a fun game for her. i looked away for a second and heard a thump. my mom was sitting next to me and said "did you see that? did you see what she did?" and i didn't (of course all the fun stuff happens when i look away...) so apparently kaiya made it all the way up - but overshot it and threw her self down the other way. still, she was sitting on her butt for a second so it counts! so of course we applauded and told her how awesome she is and all that...and she started to do it again. and made it almost all the way up. she was holding herself up with one hand and looking back and forth between my mom - like she was fishing for compliments! i went to get my camera so i could be sure and catch her sitting up for the first time, and of course as soon as i pointed it at her she shook her head no, cracked up laughing, and tipped over. ohhhh this little girl has a bad attitude ;)

Thursday, February 19, 2009

still here


i haven't posted anything in awhile, and it's just b/c nothing has really been going on. kaiya continues to be her silly self. she is on her mat, playing with toys, and giggling like a loon right now...


kaiya's very most favorite thing to do these days is take her socks off. it drives me NUTS b/c her little feet get so cold. but as soon as i turn around after putting them on she has them off already...ugh! and speaking of her little feet - i think i have been spoiled. she used to be able to wear a pair of shoes for at least a year. things are changing though. kaiya's feet are still incredibly small. but the past two shoe size changes have been done within the past 5 months. she went from being in a 5 for about a year to being in a 6 for a couple of months and then a 6 to a 7 so quickly...she has only been in the size 7 for a couple months and already they are starting to pinch her toes. i always love to buy new shoes, but it was nice being able to use them for a long time. i guess she's going through a little growth spurt or something. she looks so tall when she stretches out on the mat. i might have to get out the tape measure and see if she's added any height. the one thing i am sure of is that her little waist has not grown at all. she's my long skinny girl :)


we have started thinking about the SOFT conference this year. because of cost issues, we have decided to drive to roanoke virginia instead of flying. i have no idea how an 11 hour drive will be with my loud little monster, but i guess i will find out! i'm getting really excited about going. so many new and old families have been contacting us and saying that they will be there. it's always awesome to meet new people and reconnect with old friends.


Saturday, January 31, 2009

sent home from school

so like the title says, akaiya was sent home from school yesterday. she vomited a bunch of mucous up and they said green stuff was coming out of her nose. papa, being the amazing guy he is, got the call and went to pick her up. he even got the wheelchair home in a regular sized car! yay papa! by the time i got home kaiya was playing on her mat, bouncing around, and giggling...she does sound stuffy though. good thing it's a weekend and she can sleep in and get some rest.

Friday, January 30, 2009

another angel

we are asking for more warm thoughts to be sent out to another family. the warnemuende family lost their beautiful daughter keren this week.

http://rggrharris.com/_mgxroot/page_10825.php?id=629317

Thursday, January 29, 2009

angel

akaiya and i are asking you to keep a fellow illinois family, the sibthorps, in your thoughts. their daughter rowan passed away saturday january 24. rowan had the sweetest smile and the most beautiful blue eyes. she really was a sweet little girl. we will miss her very much.

http://qconline.com/archives/qco/display.php?id=422940

Saturday, January 24, 2009

little bundle of sunshine

kaiya has definitely been back to her happy self for awhile now. it's always wonderful for me to hear her giggles and see her smiles because we were told when she was born that we wouldn't have that.

i was talking to someone today about the problems they are having with one of their pre-teen children. this child has had a difficult life and has a lot of anger. while i was talking and trying to come up with some helpful solutions i couldn't help but look down at akaiya playing with her toys on the mat. i am so lucky because she is just full of so much joy. sometimes we get so caught up in the daily rush of needs, wants, and must haves that i feel like we forget to just sit and be happy. every day kaiya wakes up with a smile. she will roll, pull, and push herself around on the floor playing with her toys and just giggle the whole time. her little face lights up when we pick her up to play or just snuggle. and she has the sweetest habit of rubbing my arm when i'm holding her.

when i tell people about kaiya's condition they usually say something about how hard my life must be, or how rough it must be to deal with a child that has such a horrible condition. don't feel bad for me, i have it easy, i don't have to deal with teenage insanity! i have a sweet little girl that isn't embarrassed to give me hugs or kisses in public. she laughs at all of my jokes. she laughs when i haven't even made a joke. she loves it when i sing at the top of my lungs. she's rarely in a bad mood, she hardly ever whines or complains... i pretty much have a little bundle of sunshine by my side.

Saturday, January 17, 2009

cardiologist appointment

we had our appointment with the cardiologist yesterday. we were running late b/c the little girl that never poos all of a sudden decided to dirty her diaper - 3 times...ugh. and then of course b/c of these lovely subzero temperatures, a drive that should have taken 5 - 10 minutes took 25...so we were a little late, and forgot to bring "the binder". the binder is what i keep all of kaiya's medical records in. i usually bring it whenever we are meeting a new doctor or therapist. usually these people look at me like i'm insane for carrying around my kid's medical records, but i do it anyway b/c i get taken a lot more seriously when i have what another doc said to back me up...

so we go in and the nurse starts the interview process - and wouldn't you know she asks me if i have any of kaiya's past medical records with me...and then she goes into this lecture about how i should always carry them with me b/c it's so much easier for a new doc to get to know my child blah blah blah blah blah... i didn't even say anything to her b/c i knew i should have it with me, i usually have it with me - but i've NEVER been asked for it!

akaiya's blood pressure was 90/70 - seems low to me, but i have really low blood pressure too so maybe she's just like me. i asked the nurse about it and she said that some kids just have low blood pressure. so then we moved on to the EKG. i was told that kaiya would have to be very still for this test. oh my groceries. kaiya loves people, she gets really excited when people are doing things with her...this woman is putting little stickers all over kaiya's body, which is tickling her and making her laugh - then she sticks wires onto all of these stickers which gives kaiya something to play with. so now i have a kid that is giggling, pulling on wires, and bouncing around on the table b/c she is so happy to have all this attention - yeah, she's going to stay really still... so there was a miracle and the princess stayed still for short bursts which managed to work out for the test. the nurse left to get the doc....and comes back and tells me that b/c they don't have any records on my child they will have to do an echo too. (was she diggin at me about the records???) so now kaiya is delirious b/c she gets to have her shirt off, and there is goo being massaged onto her chest. she was yelling and taking big amounts of air into her lungs so she could yell louder. air in the lungs apparently obscures the view during an echo. my kid is so fun. so the nurse is a talker and is telling me all about her life, kaiya is yelling and jumping around, and i just want to see my kid's heart on the screen b/c apparently i think that i will be able to read it and see if something is wrong.... coincidentally, the little trisomy girl that is in kaiya's class just happened to have an appointment with the cardiologist earlier in the day. i'm sure the nurse was making a few comparisons between the two. this other little girl is very frail and quiet. here is kaiya - who more than makes up for her tiny size in decibels and rowdiness! so we complete the echo and wait for the doc.

he comes in and asks all the same interview questions the nurse asked...he was shocked that the cardiologist that saw kaiya when she was young didn't want to follow up on her. this panicked me A LOT! so he examined kaiya and said that he could hear the murmur. he then went to the video of the echo and showed me the hole in her heart between the two lower chambers. he said it's called an MVSD, a muscular ventricular septal defect. he said that children with this specific genetic defect (meaning trisomy 18) usually have weak or thin heart walls. kaiya's are thin but appear to be working well. he said that the hole in her heart is small and nothing to worry about. he said her heart is working great and that i shouldn't worry about her at all. he also said that he wants to see her once a year b/c kids with her condition sometimes have hearts that will start to function at a decreased capacity over time b/c of muscle tone (not something i had heard before).

so overall i guess the news is good. the doctor seemed very personable and nice. i didn't expect her to have a hole b/c i was told there were none, but apparently it's not something i have to worry about so i will try not to.

kaiya seemed to be bothered by some phlegm yesterday. she was gagging all throughout the day, especially when she layed on her back. i tried giving her stuff to drink, patting her on the back to get her to cough (okay, maybe it was more than a pat...), and nothing seemed to help her out. it was bothering her so much she wasn't able to get to sleep during the day for a nap. she finally puked up a bunch of phlegm at about midnight and was just fine afterward. she has been her usual bouncy happy self all day today.

Thursday, January 8, 2009

happy new year

well we are a week into the new year so i guess i'll do an update on where akaiya is at...

at the last weigh in she was 28.5 pounds. she hasn't been eating to well in school so hopefully her weight doesn't drop. i finally gave in and measured her height last night. everyone keeps telling me that she looks so long. every time i think she's gotten taller i measure her and there has been no change so i just kept putting off getting out the good ol measuring tape. well, her legs were looking really long so i figured i would check her out. she measured in at 40 inches. if she would straighted her little legs all the way out she might be a little taller but probably not by much.

akaiya is currently in the 1st grade. she attends school 5 days a week. the bus comes to pick her up at 7:15 and she comes home at about 3:30. it's a long day - but she naps at school almost every day (not that the teacher wants her to!) she has made her first real friend at school. i think that has been my favorite thing about the 1st grade for her. i never even considered that she could make friends because she doesn't communicate verbally, and she doesn't walk - but the little girl has a lot of charm. for some reason she has connected with this boy, and i think it's really awesome. he still informs me that she is his "girlfriend" when i walk into the classroom - gotta love 1st graders :)

akaiya has been trying her hardest to get herself into the sitting position from laying down. she has the strength, she knows what she needs to do, she just can't get all the steps in the right order...she has a great time giggling while she tries to get up though!

healthwise akaiya has been great. she has had a little cold or two, but nothing serious. at the recommendation of a ped that she saw when she had a cold (a doc that had never seen akaiya before) we will be seeing a cardiologist. hopefully this visit will not reveal any issues. the last time we saw a cardiologist she was about a year old and he said that she didn't need to be followed, so this recommendation came as a bit of a surprise. akaiya's biggest health issue is constipation. we have tried everything and have basically resigned ourselves to the fact that she's always going to have poopin' problems.

the things we are looking forward to in the new year is mommy's graduation in may (yay!) we are so excited about going to virginia for conference. hopefully a lot of east coast people that we have never met in person will be able to attend! i am hoping to get kaiya into hippotherapy. all of the research i have done makes it seem really worthwhile - and kaiya would probably get a huge kick out of seeing the horses. she absolutely loves dogs so she would probably think it was a huge puppy with funky hair :)

we would like to wish everyone a happy new year. thank you to all that read about akaiya and wish her well. we hope that every has a great 2009!