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 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 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 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" 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's amazing i haven't been questioned by anyone while we're out and about!


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???

cool new product

akaiya still uses a'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


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 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" 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 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.