tag:blogger.com,1999:blog-1762319258574850382012-02-07T14:31:40.971-08:00Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.comBlogger1011100tag:blogger.com,1999:blog-176231925857485038.post-4640148172673205132011-06-24T20:43:00.000-07:002011-06-24T20:50:26.230-07:00

kaiya came with me to do some grocery shopping today. it has been awhile since she & i did a solo trip because she's getting kind of big to sit in the shopping cart, and i can't push a cart and a stroller at the same time. but we both needed to get out of the house today so off we went to food 4 less. this store isn't the closest too us, but i like to go in there sometimes because they have some

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com2tag:blogger.com,1999:blog-176231925857485038.post-8030608248492450142011-06-15T19:30:00.000-07:002011-06-15T20:07:39.985-07:00

i have really got to work on posting here more often. i come and read the blogs of other kiddos and i tell myself i should update akaiya's, but somehow i always get distracted and tell myself i'll do it tomorrow. well, school is out, kaiya and i are both footloose and fancy free at the moment, and i don't have anymore excuses so here we are.i guess the reason for not posting is that i don't

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com1tag:blogger.com,1999:blog-176231925857485038.post-30487410884954374882011-02-17T16:57:00.000-08:002011-02-17T17:42:34.887-08:00

i was reminded awhile back that i have been neglecting akaiya's blog. i visit akaiya's friends blogs, but i haven't visited hers in awhile and wow....it's been a long time since i've written an update. life really does get in the way if you let it.akaiya is getting fat.it doesn't sound like a nice thing to say, but it is what it is. she has cottage cheese on her legs and multiple belly rolls. we

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com2tag:blogger.com,1999:blog-176231925857485038.post-40282745748408751272010-11-11T21:13:00.001-08:002010-11-11T21:29:02.439-08:00

we've been trying to grow kaiya's hair out. the thought was that if it got to a certain length it might actually weigh itself down and hang nicely... this didn't seem to be working at all. her fro just kept getting bigger and bigger and crazier. she hates having her head touched, so imagine trying to comb through this big mop of curls after she's been rolling around on the floor or in her bed.

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com3tag:blogger.com,1999:blog-176231925857485038.post-54471112516111372922010-11-11T20:48:00.000-08:002010-11-11T21:13:05.768-08:00

akaiya had a check up with her neurologist the other day. my parents brought her b/c i had parent teacher conferences and couldn't take the day off of work. they had a lot of information to take in that's for sure! she is still having seizures. they seem to increase the more constipated she is - i don't know why this is. he is not happy with her continued activity and he wants to try a ketogenic

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com0tag:blogger.com,1999:blog-176231925857485038.post-56848106686894491762010-11-11T20:40:00.000-08:002010-11-11T20:48:51.138-08:00

i had major creative blockage this year when trying to figure out what akaiya was going to be for halloween. usually i start planning months in advance b/c it is one of my favorite holidays. this year i just couldn't come up with anything that really got me excited. then as i was looking thru some pictures i came across this one:this is me when i was in kindergarten. 28 years ago. 4 years old...

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com1tag:blogger.com,1999:blog-176231925857485038.post-41940033825197017202010-10-29T20:05:00.000-07:002010-10-30T14:49:25.319-07:00

i did something the other day i never really thought i would do.i bought kaiya her first bra.i know what you're thinking..."this woman must be crazy!" "isn't kaiya only 8 years old?!?!" "what is wrong with her mom???"well, the lil person is in the early stages of puberty. and she's developing. quickly. i like to use the little cami shirts with the shelf supports...but then i was at old navy and

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com3tag:blogger.com,1999:blog-176231925857485038.post-5962761765585877072010-09-30T09:03:00.000-07:002010-10-07T18:44:37.103-07:00

akaiya started having seizures around this time last year. i don't know why, i don't know how, i just don't know.... we've been trying to find meds that will work for her and have not had much success. she started on depakote, then we added phenobarbital, then we added topomax, now we've taken away topomax and added keppra. 20 mL of meds go into this kid twice a day. she went from taking nothing,

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com3tag:blogger.com,1999:blog-176231925857485038.post-1959690458050859492010-09-06T20:14:00.001-07:002010-09-06T20:43:51.144-07:00

saturday was akaiya's 8th birthday. where the heck has the time gone? 8 years ago my little miracle was born and we were told she wouldn't be with us for very long at all. she had something different in mind though.it's been a crazy 8 years. this little girl has taught me everything. absolutely everything about all areas of life. it's amazing how much impact one person can have, especially one

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com3tag:blogger.com,1999:blog-176231925857485038.post-73214177963009168842010-07-12T15:49:00.000-07:002010-07-12T15:54:21.549-07:00

we had our first tube "mishap" today. we were in the store shopping for a lightweight stroller that is high enough so that miss kaiya doesn't drag her feet on the ground. i found one i wanted to try out, turned around to take kaiya out of the cart, and saw that her shirt was all wet. i didn't think that she had drooled that much in the minute it took me to get the stroller down so i lifted her

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com3tag:blogger.com,1999:blog-176231925857485038.post-88727538801448144662010-07-08T21:53:00.000-07:002010-07-08T22:05:41.713-07:00

akaiya is getting heavy. i didn't realize how quickly she would gain weight. i don't know if it's good that she's gaining weight this quickly...but there it is. i'm giving her the amount of calories the nutritionist told me to. her doctor hasn't said that he's worried about it. so i guess we'll just keep it up and see where it takes us. i used to just carry her if i was running in to the store

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com5tag:blogger.com,1999:blog-176231925857485038.post-79429669417843541852010-06-23T14:27:00.001-07:002010-06-23T14:35:46.932-07:00

we were finally able to go home on monday. the docs released us early in the morning, but we had to wait until 7pm to leave b/c home health care had to be set up. it was such torture knowing we were medically okay and ready to go, and all we were waiting for was a pump to be delivered. a little part of me was wondering why the hospital waited until the day we were being released to set this up.

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com4tag:blogger.com,1999:blog-176231925857485038.post-18212944957878464662010-06-20T06:57:00.000-07:002010-06-20T07:12:12.361-07:00

feeds were started last night at 6:30 pm. we started with pedialyte and once we realized she was tolerating that moved to pediasure at 12:30 am. she has been on continuous feeds of 45 cc's per hour since then and so far so good. she seemed to be in pain last night at around 2 am, but i think that it's her iv bugging her not her belly so much. she had been laying on the side where the iv is and

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com5tag:blogger.com,1999:blog-176231925857485038.post-84218765477333045232010-06-19T09:18:00.001-07:002010-06-19T09:34:28.277-07:00

the kiddo had kind of a rough night. her heart rate was high and her oxygen saturation was low. she was put on oxygen and her sats still didn't get above 94 until this morning. the resident thought that her heart rate might be high because she hadn't had anything to eat or drink so she might be getting a bit dehydrated even though she has iv fluids. she bumped up her fluid rate and that brought

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com2tag:blogger.com,1999:blog-176231925857485038.post-66898515406994062152010-06-18T19:06:00.000-07:002010-06-18T20:49:01.648-07:00

well, the g-tube procedure has finally been done. the scheduling got screwed up so we didn't do it wednesday. we were told we were going in thursday morning and that didn't happen. we finally were taken down thursday at around 4. they absolutely tortured kaiya trying to get an iv. three people were poking her at one time. it was awful. it always aggravates me when doctors that probably do 1 or 2

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com1tag:blogger.com,1999:blog-176231925857485038.post-48358876369075563162010-06-16T08:46:00.000-07:002010-06-16T09:28:18.450-07:00

a lot has been going on since i last updated! kaiya was released from the hospital may 19th without any real idea of why she was refusing to eat. she went home hungrier than ever and was eating everything in sight for awhile. she left the hospital at 32 lbs and at her doctor appt 6 days later was already up to 36 lbs. we thought she was on her way back to her normal self. then on the last day of

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com1tag:blogger.com,1999:blog-176231925857485038.post-41060556210570875842010-05-15T07:12:00.000-07:002010-05-15T07:51:01.672-07:00

akaiya has been in the hospital since tuesday night. she started having fevers on sunday, but they would come down so i didn't take her in to the doc. she wasn't really eating that well, but i figured that was to be expected if she was feeling a little poorly. then tuesday came around and the lil one's temp went up to 105.8. so off to the hospital we went. they ran a bunch of tests and couldn't

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com2tag:blogger.com,1999:blog-176231925857485038.post-54586230902820002862010-04-02T19:30:00.000-07:002010-04-02T19:38:04.149-07:00

i finally gave in to kaiya's nana and took the lil lady to get professional photos taken. akaiya laughed through the whole session. it was pretty funny =) i think she looks like a cupcake in her pink dress. i'm only posting a couple of the pix here - the whole photo shoot is on facebook.

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com0tag:blogger.com,1999:blog-176231925857485038.post-25079281111857320402010-03-25T18:04:00.000-07:002010-03-25T18:18:21.713-07:00

kaiya (like a lot of t18 kiddos) has always struggled with her weight. she is really good at losing it, not so hot at gaining tho. at least that used to be the case. this school year the teacher has had to add another snack time into the day b/c of another student's particular needs. she asked if i would like her to try and give kaiya an extra snack at that time and i said sure, why not? well

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com2tag:blogger.com,1999:blog-176231925857485038.post-73857559979713507802010-03-09T20:41:00.000-08:002010-03-09T21:05:52.860-08:00

we had our 4 week check-up with the neurologist. and it went so "well" that i called her old neurologist and made an appointment with him... He said that the seizures she is having do not have a name. he also told us that the seizures themselves don't hurt her or cause any damage to her brain, but that the electrical activity that is going on is causing severe brain damage. the medicine we were

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com3tag:blogger.com,1999:blog-176231925857485038.post-58638226105317719122010-02-07T21:29:00.000-08:002010-02-07T22:05:19.657-08:00

i had mentioned awhile back that kaiya was having episodes that we thought were seizures. we had an EEG this past wednesday. my parents took her because i had to work, and when they got home there was already a message on the answering machine - the hospital asking me to call the neurologist right away. so i gave them a call and they wouldn't give me any information, they just said the neuro

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com4tag:blogger.com,1999:blog-176231925857485038.post-44712040406884554342010-01-31T19:38:00.000-08:002010-01-31T20:00:24.655-08:00

maybe it's just me, but i've noticed something when i'm out and about with akaiya. it really struck me yesterday when i was standing in line at our local wal-mart. there was a man with his two children waiting behind me. they were both boys, big boys, one looked to be about 8 and the other a teenager. the younger one was sitting in the cart, which i thought was odd, but hey - to each his own. so

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com3tag:blogger.com,1999:blog-176231925857485038.post-54267387689205356142010-01-02T22:10:00.000-08:002010-01-02T22:54:53.246-08:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com4tag:blogger.com,1999:blog-176231925857485038.post-89515716632024253572009-12-12T09:25:00.000-08:002009-12-12T09:37:24.726-08:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com3tag:blogger.com,1999:blog-176231925857485038.post-87812521061795435382009-11-02T15:22:00.000-08:002009-11-02T15:28:06.219-08:00

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 ;)

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com3tag:blogger.com,1999:blog-176231925857485038.post-6674974568368459132009-10-14T16:35:00.000-07:002009-10-14T16:48:50.770-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com1tag:blogger.com,1999:blog-176231925857485038.post-14841796558165907552009-09-27T10:33:00.000-07:002009-09-27T10:34:48.054-07:00

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 grinSaid, "I can't get out, but I won't give in!I'll swim around til my

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com0tag:blogger.com,1999:blog-176231925857485038.post-89729616619055382522009-09-26T17:47:00.000-07:002009-09-26T17:59:30.519-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com1tag:blogger.com,1999:blog-176231925857485038.post-66874951867302539602009-09-17T20:01:00.000-07:002009-09-17T20:20:01.491-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com3tag:blogger.com,1999:blog-176231925857485038.post-1947071473920039422009-09-13T19:43:00.000-07:002009-09-13T19:56:56.922-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com1tag:blogger.com,1999:blog-176231925857485038.post-79984396558367248582009-09-12T20:02:00.001-07:002009-09-12T20:10:51.697-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com2tag:blogger.com,1999:blog-176231925857485038.post-14922020974657433182009-09-04T16:32:00.000-07:002009-09-04T16:58:00.809-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com5tag:blogger.com,1999:blog-176231925857485038.post-43132000243159459482009-08-29T21:01:00.000-07:002009-08-29T21:20:31.165-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com1tag:blogger.com,1999:blog-176231925857485038.post-49324009941698558502009-08-23T17:12:00.000-07:002009-08-23T17:16:46.129-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com1tag:blogger.com,1999:blog-176231925857485038.post-47526010678149138002009-08-11T20:01:00.000-07:002009-08-11T20:38:41.748-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com5tag:blogger.com,1999:blog-176231925857485038.post-15868716923639514972009-07-26T20:40:00.000-07:002009-08-04T19:27:50.559-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com3tag:blogger.com,1999:blog-176231925857485038.post-48620847039111089722009-07-08T18:36:00.000-07:002009-07-08T19:02:52.825-07:00

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.

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com4tag:blogger.com,1999:blog-176231925857485038.post-36003267143576764262009-07-08T18:19:00.000-07:002009-07-08T18:34:49.514-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com0tag:blogger.com,1999:blog-176231925857485038.post-52596588816210090402009-07-08T18:05:00.000-07:002009-07-08T18:16:11.574-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com1tag:blogger.com,1999:blog-176231925857485038.post-79643196920755836532009-07-02T18:03:00.000-07:002009-07-02T19:25:08.323-07:00

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,

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com5tag:blogger.com,1999:blog-176231925857485038.post-85078929546155851462009-07-02T17:52:00.000-07:002009-07-02T18:03:54.211-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com0tag:blogger.com,1999:blog-176231925857485038.post-44604049985848839212009-07-01T21:55:00.000-07:002009-07-01T22:00:18.568-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com1tag:blogger.com,1999:blog-176231925857485038.post-51618641704473328962009-06-27T13:26:00.000-07:002009-06-27T16:15:08.107-07:00

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.

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com6tag:blogger.com,1999:blog-176231925857485038.post-83647324832789406362009-06-22T17:11:00.000-07:002009-06-22T17:25:31.350-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com2tag:blogger.com,1999:blog-176231925857485038.post-80803312234441892902009-06-16T18:46:00.000-07:002009-06-16T19:05:28.717-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com4tag:blogger.com,1999:blog-176231925857485038.post-79816735815380213812009-06-07T12:52:00.000-07:002009-06-07T13:00:13.908-07:00

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,

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com3tag:blogger.com,1999:blog-176231925857485038.post-66716175453119555582009-06-03T19:52:00.000-07:002009-06-03T20:08:05.656-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com2tag:blogger.com,1999:blog-176231925857485038.post-44583506015546849772009-05-22T20:15:00.000-07:002009-05-22T20:25:19.327-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com3tag:blogger.com,1999:blog-176231925857485038.post-10760931561068686442009-05-10T18:12:00.000-07:002009-05-10T18:40:53.881-07:00

" 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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com3tag:blogger.com,1999:blog-176231925857485038.post-50208247270325100442009-04-21T21:53:00.000-07:002009-04-21T22:04:39.450-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com3tag:blogger.com,1999:blog-176231925857485038.post-70982141245028089142009-04-17T20:57:00.000-07:002009-04-18T09:03:25.265-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com2tag:blogger.com,1999:blog-176231925857485038.post-53104436916022038922009-04-16T18:09:00.000-07:002009-04-16T18:17:35.355-07:00

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,

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com1tag:blogger.com,1999:blog-176231925857485038.post-79840172324962920402009-04-13T20:56:00.000-07:002009-04-13T21:08:10.282-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com3tag:blogger.com,1999:blog-176231925857485038.post-46159894152341647802009-04-12T15:11:00.000-07:002009-04-12T15:20:16.327-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com0tag:blogger.com,1999:blog-176231925857485038.post-38423361335725918552009-04-11T19:22:00.000-07:002009-04-11T19:28:53.892-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com1tag:blogger.com,1999:blog-176231925857485038.post-16363277617903021852009-04-10T17:47:00.000-07:002009-04-10T21:11:27.634-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com1tag:blogger.com,1999:blog-176231925857485038.post-16630920646984290152009-03-23T09:01:00.000-07:002009-03-23T09:07:30.809-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com2tag:blogger.com,1999:blog-176231925857485038.post-44457840362065297842009-03-22T16:32:00.000-07:002009-03-22T16:39:55.117-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com3tag:blogger.com,1999:blog-176231925857485038.post-45386932102358710962009-03-16T19:31:00.000-07:002009-03-16T19:40:39.044-07:00

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.

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com3tag:blogger.com,1999:blog-176231925857485038.post-47843679380839041432009-03-07T16:41:00.000-08:002009-03-07T16:57:54.494-08:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com1tag:blogger.com,1999:blog-176231925857485038.post-23514929752623492792009-03-05T20:29:00.000-08:002009-03-05T20:41:50.448-08:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com2tag:blogger.com,1999:blog-176231925857485038.post-12472925383420525922009-02-19T19:32:00.000-08:002009-02-19T19:57:56.876-08:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com2tag:blogger.com,1999:blog-176231925857485038.post-2630835743834230892009-01-31T06:58:00.000-08:002009-01-31T07:02:13.528-08:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com1tag:blogger.com,1999:blog-176231925857485038.post-16770165966101038472009-01-30T05:56:00.000-08:002009-01-30T05:58:27.886-08:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com0tag:blogger.com,1999:blog-176231925857485038.post-28455280374781814142009-01-29T20:21:00.000-08:002009-01-29T20:25:24.460-08:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com0tag:blogger.com,1999:blog-176231925857485038.post-47760952860013491532009-01-24T22:22:00.000-08:002009-01-24T22:42:04.972-08:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com2tag:blogger.com,1999:blog-176231925857485038.post-82870023720648422352009-01-17T18:46:00.000-08:002009-01-17T19:26:54.485-08:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com2tag:blogger.com,1999:blog-176231925857485038.post-16016181927567359432009-01-08T18:13:00.001-08:002009-01-08T18:41:30.477-08:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com5tag:blogger.com,1999:blog-176231925857485038.post-72765044107186949482008-12-27T19:21:00.000-08:002008-12-27T19:54:31.724-08:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com2tag:blogger.com,1999:blog-176231925857485038.post-46827613180221722772008-12-20T21:58:00.000-08:002008-12-20T22:06:15.062-08:00

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!

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com2tag:blogger.com,1999:blog-176231925857485038.post-53975388629426935842008-12-17T18:45:00.000-08:002008-12-17T19:44:37.762-08:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com2tag:blogger.com,1999:blog-176231925857485038.post-30762689670804602992008-12-14T10:29:00.000-08:002008-12-14T10:43:32.475-08:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com1tag:blogger.com,1999:blog-176231925857485038.post-43926319830027685452008-12-12T14:10:00.000-08:002008-12-12T19:07:44.023-08:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com1tag:blogger.com,1999:blog-176231925857485038.post-27999300183690547002008-12-01T19:35:00.000-08:002008-12-01T19:52:27.976-08:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com2tag:blogger.com,1999:blog-176231925857485038.post-73422872496841868512008-11-28T18:07:00.000-08:002008-11-28T18:27:54.893-08:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com3tag:blogger.com,1999:blog-176231925857485038.post-45824194134185190042008-11-22T11:50:00.000-08:002008-11-22T12:04:00.837-08:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com3tag:blogger.com,1999:blog-176231925857485038.post-74673460916171459472008-11-17T10:42:00.000-08:002008-11-17T10:51:28.380-08:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com1tag:blogger.com,1999:blog-176231925857485038.post-6235322287843191142008-11-15T10:42:00.001-08:002008-11-15T10:52:27.277-08:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com1tag:blogger.com,1999:blog-176231925857485038.post-89499106367413831582008-11-15T10:18:00.000-08:002008-11-15T10:41:41.257-08:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com0tag:blogger.com,1999:blog-176231925857485038.post-48649142107040661962008-11-05T21:15:00.001-08:002008-11-05T21:20:42.398-08:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com2tag:blogger.com,1999:blog-176231925857485038.post-36403755493297794922008-11-05T21:08:00.001-08:002008-11-05T21:15:22.639-08:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com0tag:blogger.com,1999:blog-176231925857485038.post-72922940445039931852008-11-05T11:08:00.000-08:002008-11-05T11:33:59.093-08:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com2tag:blogger.com,1999:blog-176231925857485038.post-28591917409699181592008-11-03T18:17:00.000-08:002008-11-03T18:53:23.479-08:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com1tag:blogger.com,1999:blog-176231925857485038.post-11982459761651160622008-10-31T19:24:00.001-07:002008-10-31T19:39:14.167-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com4tag:blogger.com,1999:blog-176231925857485038.post-10498282662517242132008-10-29T21:03:00.001-07:002008-10-29T21:12:27.078-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com1tag:blogger.com,1999:blog-176231925857485038.post-43505385664368263372008-10-25T21:40:00.000-07:002008-10-25T21:56:53.254-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com3tag:blogger.com,1999:blog-176231925857485038.post-33717743153427988022008-10-21T21:48:00.001-07:002008-10-21T21:56:12.913-07:00

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 :)

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com2tag:blogger.com,1999:blog-176231925857485038.post-22525615278986793552008-10-19T14:39:00.000-07:002008-10-19T14:47:33.648-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com2tag:blogger.com,1999:blog-176231925857485038.post-22527956920447980092008-10-08T13:52:00.000-07:002008-10-08T14:03:26.908-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com2tag:blogger.com,1999:blog-176231925857485038.post-21302225605086792882008-10-07T20:36:00.000-07:002008-10-07T20:47:46.087-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com3tag:blogger.com,1999:blog-176231925857485038.post-77053416086385735752008-10-04T09:27:00.000-07:002008-10-04T10:14:26.818-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com0tag:blogger.com,1999:blog-176231925857485038.post-24141307535127703962008-09-29T19:20:00.001-07:002008-09-29T19:32:37.491-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com2tag:blogger.com,1999:blog-176231925857485038.post-80209218940678757152008-09-28T20:52:00.000-07:002008-09-28T21:06:12.142-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com1tag:blogger.com,1999:blog-176231925857485038.post-44583321033552334572008-09-24T13:46:00.001-07:002008-09-24T14:04:39.861-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com3tag:blogger.com,1999:blog-176231925857485038.post-34060910556582053322008-09-20T20:59:00.000-07:002008-09-20T21:43:48.249-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com2tag:blogger.com,1999:blog-176231925857485038.post-121398757241121522008-09-18T19:50:00.000-07:002008-09-18T20:10:57.931-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com3tag:blogger.com,1999:blog-176231925857485038.post-72900893076344211092008-09-16T10:56:00.000-07:002008-09-17T05:43:55.695-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com2tag:blogger.com,1999:blog-176231925857485038.post-6958891856734127952008-09-15T07:01:00.000-07:002008-09-15T07:08:46.504-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com3tag:blogger.com,1999:blog-176231925857485038.post-85762985506327011412008-09-10T13:59:00.000-07:002008-09-14T12:50:25.988-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com0tag:blogger.com,1999:blog-176231925857485038.post-19828263645363491672008-09-09T13:11:00.000-07:002008-09-09T13:35:00.289-07:00

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

Kellyhttp://www.blogger.com/profile/10213820326822963194noreply@blogger.com3