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 :)
