Friday, December 28, 2007

Hannah look-a-like

Josie got a Hannah Montana wig from grandma Shirley tonight and while she was embarrassed to wear it at her house, she proudly dispayed it at home!

Colorado bound



my friend, Bob and i are going to a 'Wild At Heart' christian men's retreat in Buena Vista, CO in early February. We are staying at the Frontier Ranch which sits near the base of that beautiful mountain (Mt. Princeton) in the photo. that is a photo from Christmas day that my new friend in Colorado has posted on one of his sites (www.mtprinceton.org). the anticipation grows daily. i'm excited not only for the spiritual growth/renewal, but for the AMAZING scenery that i'm going to be taking TONS of pictures of. i'll share them with you upon my return to KS (that might be a depressing drive back, ha).

Tuesday, December 25, 2007

No dreaming, it's white!


Don't get to see too many of these. Luckily the snow from two days ago stuck around. On the way to pick Cami up someone in front of me on the country roads ran out of gas; a father and son who were out bow hunting. So i drove back to the house to get the gas can that still had a couple gallons in it. it felt so good to serve someone this morning. i wouldn't let him pay me so he stuck it on my windshield wiper.
the presents are all unwrapped and the kids are playing with their new toys. Cami's favorite gift was a sweat outfit from Victoria's Secret. Josie's favorite is her "e-pet". And taylor's is a pair of real handcuffs.
Merry Christmas everyone from our family to yours!

Saturday, December 22, 2007

You'll Shoot Your Eye Out!



One of our family Christmas traditions is to watch "The Christmas Story". It's a cult classic. If you haven't seen it, you must. The title of this blog is a recurring theme of the movie as little Ralphy's dream present is a Red Rider 200 Shot Carbide Action Air Rifle with a compass in the stock.

Anyway, today Taylor was upstairs with a Nerf gun that shoots the long "bullets" with suction cups on the end. he was in the walk-in closet where Tracy was and i heard the gun go off and taylor started crying. for some reason he had the gun pointed at his face and pulled the trigger. i immediately started snickering and exlaimed, "you shot your eye out!" Tracy could not help but join in the fun. i kept chasing taylor down with the digital camera to take a picture and post it but he didn't want to cause everyone would laugh at him. so no picture, but i HAD to tell the story!! Just don't tell Taylor you read it here!

we watched the movie tonight and though i've seen it 50 times it seems, tonight i saw a couple things i never caught before.

Well it seems as though Topeka got 9 inches of snow today. Taylor and i went out to shovel the long drive so we could get to church in the morning. Best i could tell, we got about 6 inches here. we are much further north than Topeka and closer to the "edge" of the storm. i can't wait til morning light to truly appreciate all the snow fall. i'll be sure to take lots of pics!

Mail Thief!!


Someone's stealing our mail!!! oh, wait, that's just Taylor. it's been snowing for hours now and still have lots more snow to come!

Santa Claus is Coming To town


With the remodel, we never did anything with the fireplace (it has no mantel). Well, Josie was upset that Santa was not going to be able to come now cause there was no place to hang the stockings. So, a piece of MDF and a jigsaw and wahla!

Sunday, December 16, 2007

Ice Storm

We lost power at 1:00 AM tuesday morning and it did not come back on until Friday morning. the first night we set up the tent in th eliving room and all slept in there together to generate heat. when we woke up the thermostat said 54 degrees. so we went to tracy's parents. power returned for a few hours thursday evening but when it went off again, tracy took the kids back to her parents and i drove to maple hill to get tracy's sister's generator and i went back to the house to stay the night. the thermostat was down to 50. but in my heavy sleeping bag and a few blankets... i slept GREAT and was plenty warm. i was going to set the generator up in the morning - but we got power back befrore i could set it up. the picture above is our huge tree out front that has lost the whole top ot it and most the limbs in the middle, as you can see. the branches had at least half an inch of ice on them.

the news has reported electric companies from ten states have come to kansas to help restore power. before the storm even came, our governor had declared every county in the state (105), disaster areas. we thought we had it bad, but there are still many, many families areound the state and even within miles of us that still do not have power. please keep them in your prayers.

i don't have a picture but tonight was our church's 'gift' to topeka as for the third year we've put on a huge Christmas fireworks show out at Heartland Park Race track. it's called Shine The Light. This time, a friend and i helped set up the whole show. i just wanted a behind the scenes perspective and to help out. i didn't know we'd actually be wiring up the charges and fireworks. i mean we were responsible for getting 'power' to a lot of the fireworks. so, if they didn't go off like they were supposed to.... well, it was my friends fault, ha! just kidding. everything seemed to go off without a hitch. it was a great learning experience!

well that's all for now.

Thursday, November 29, 2007

Halloween 07


No surgery for a while!

i'm not doing very well at posting updates, since they are so few and far between. but that's great too. recently Josie got her new foot brace. this will probably be the last one she has, at least for some time. she hardly wore her last one and she's been doing fine without it. so the foot dr. said if she does fine again this time, then we probably don't need to worry about her wearing a foot brace since she's doing fine without it.

then we met with her VEPTR doctor. they took x-rays and he said Josie still doesn't need a back surgery. so she can probably wait until the spring. that would be over a year without a back surgery!! incredible! and there is more great news.... the company that makes the titanium rods is coming out with a new version that's a lower profile (not as thick so it doesn't stick out under the skin like the original ones). and he plans to put those in Josie. she needs a new one back in her left side anyway from when he took it out in February so he'll put a low profile one in there, but he's also thinking about swapping out the one that's still in, with a thinner one!!

let's see, what else.... our Silver Lake Eagles had an undefeated football season and we drove down to Hutchinson for the 3A state championship game. it was against another undefeated team. the team we beat last year for the state title.... and we, got, smoked!!! man was it ugly. but kudos to them. it's their fist state football title, ever.

well, let me be done with this and see if my Packers can pull out a win against the Cowboys... it's not looking good.

Friday, October 12, 2007

Skin and Stuff

Josie had a followup appointmetn with her skin doctor earlier this week (regarding her psoriasis). all is looking well now that we've got a new prescription for that potent cream. it's knocking it out again.
Josie continues to lose more teeth. both front teeth are out now. so that's four teeth she's missing now. i think she's begun to wiggle another one. th tooth fairy is going to have to start budgeting in a lost tooth fund.

Tracy got into a minor accident last weekend. she hit a railroad crossing sign right down our street. the windshield was the worst, as it took the brunt of the sign. we should be getting the car back today. we have REALLY been spoiled with the rental car though. we've been driving the top of the line toyota Avalon with leather and power everything, and you name it. oh well.

all else is going well!

Monday, September 10, 2007

Remodel Pics


Well i don't have any "before" pictures readily available. what we did is widen the original pass through from living room to diningroom and added columns. it was just a 60" wide doorway. and i added all the wainscoting myself, as well as the electrical. we added carpet in the living room and had the hardwood redone in the dining room. the fireplace used to be boxed in to the ceiling and covered with plaster. we tore everything out to expose the original fireplace. now we just need to decide what to do with it.

It's been a while



Wow, it's been two months since i've posted on here. Time flies when your busy.
Josie is up to three teeth she lost in less than three weeks. That was a little tough on the tooth fairy. afterall, my teeth were only worth a fraction of what they seem to be worth today when i was Josie's age!
Josie has been doing great. this darn psoriasis continues to reak havoc on her though. it is spreading more to her sides and on her legs an arms, a spot or two on her neck and face. the soonest we can get into the skin doctor is October 31. which means Josie will miss her halloween party at school. I assume we are still on schedule to have another rib surgery in December (if we can get the psoriasis knocked out on her incision sites).
Taylor is full swing into his football season. they played their first game last saturday. unfortunately they lost. they got within a few yards of scoring (to win) when the time ran out. he assisted in a sack (tackeling the quarterback) which is great. he's geting a little more aggressive out there. Today he got fitted for his retainers. He has begun the orthodontic work to get his mouth ready for braces. he has to have those devices that gradually spread his bite out (he has a narrow pallet). fun fun.
Cami continues with the Thunderettes High School Dance Team. Their first game performance will be this Friday night. I still can't comprehend that she will be an adult in a little more than three years. is that possible?! She's been bugging us to get her license. of course, i am in no hurry. I didn't have one til i was 16, and i still wasn't responsible enough to have one then. Truth be know, i have let her drive a few times on our country back roads. She has done quite well really. But driving with your dad in the passenger seat is much different that alone or with friends.
We finally finished some major remodeling on the house. well, there are still a few finishing touches to be done. all that's left to be remodeled is the kitchen, bathroom, and office. i'll try an post some before an afters of the living room and diningroom remodel.
We got another batch of kittens to try and keep around (barn cats). our neighbor to the south had a whole mess of kitchens. so a few days ago we took four. and by the morning 3 of them went back to their house. so now i've got five in a large rabbit cage, hopefully aclamating them to our propert for a day or two. i'll let them out tonight and see if they stay.
that's about it for now.

Tuesday, July 10, 2007

Ears Pierced



Josie got her ears pierced!!!!

Wednesday, July 04, 2007

Happy 4th!



Happy 4th of July!!!!!!!







Dance Camp


Cami finished her dance camp yesterday. Tracy and i drove to Emporia to watch her perform. There were ten school represented i believe (all Kansas). Cami earned a number or ribbons and the school received several "bronze" plaques, other certificates and the coveted "spirit stick". It was fun. Cami had a great time. there were a couple girls that seemed a little full of their selves, but everyone encouraged each other and cheered others on. WAY TO GO CAMI!!

Thursday, June 28, 2007

Ball Tournament


Taylor and i were at the ball park til after 11:00pm last sunday evening only to lose his first tournament game. when we got home at almost midnight i still had to wash his uniform so Tracy could turn around and take him the next night - which they won. He was to play tonight but last night's game(s) got rained out so he won't play til Saturday morning. if they continue to win they'll play saturday afternoon, twice on sunday then monday night for the championship. it's a long shot, but we're hopeful.

UPDATE*** Well, after the rain played havoc on the tournament schedule... Saturday's game got postponed, then canceled until sunday morning. then sunday morning's game got delayed. They finally played, but lost. Taylor wasn't too upset.

Tuesday, June 19, 2007

Still Here...

Okay, it's been a while since i've been here to post anything. It's actually a good thing, but i suppose i could be updating you on other stuff besides dr. appointments and marathon training (which i start again in two weeks).

Tracy took this photo last weekend. her and taylor played in the pool for HOURS.

Josie:
Josie has been doing great! no problems related to her back. the psoriasis still hangs around on her incisions but i suspect that'll be a long term problem from now on. Tracy bought Josie some new Crocks and discovered for the first time it appears we are going to have to actually start bying her two pairs of shoes of different sizes. her right foot has always maintained being a half inch shorter than her left and the brace made up the difference. but now it's one inch shorter. She sees the foot doctor in September. and her next rib surgery won't happen until December - that is great news!! I have mentioned to a friend that we need to look at organizing another fundraiser. i believe we have enough to cover her for one more year, but i don't like waiting til the money is nearly gone.

Taylor:
Taylor is in his last week of the baseball season with the tournament this weekend. i'm not happy that it starts on Sunday and Sunday mid morning to boot. i think his first game will be at 11:15 as apposed to 9:00, but it's still not enough time to get to church. He is one of the pitchers and plays outfield. We are trying to find him some golf lessons yet this summer too.

Cami:
Cami just had her dance recital last week at TPAC. She also took a friend to Worlds of Fun with the church youth group Monday. She said they had a blast. I don't recall if i posted this already but she had also made the Shawnee Heights High School Thunderettes Dance Squad. Lots of early morning practices and they go to Emporia State the last weekend in June for a clinic and competition. She seems to enjoy it, but is tired a lot more now.

Tracy & I:
We are still deep in the remodeling of our dining room and living room. it is going to look AWESOME when we are done, but it is taking forever. i still plan to be all done within the first week of July - depending when the flooring gets started and done. we're finally going to put carpet in the living room. i know everyone LOVES the original hardwood we have - and we do too, but carpet in the one room will make it so much cozier in there. they are going to refinish the hardwood in the diningroom. this summer schedule is making it impossible for me to get work done.

well, that's plenty long enough. i'll send an update after Taylor's tournament.

Sunday, April 29, 2007

Oklahoma City Memorial Marathon


i have some more dramatic photos of the memorial, but the file size is too large to upload on this site. it was neat that while there a momma duck and her ducklings came walking into the reflecting pool.
well, this last friday Tracy, I, my running partner and his wife drove to OKC to run in the OKC HALF marathon. the day before the race (yesterday) Bob and i walked to the start line to see how far it was to the hotel. The start line was actually directly behind the wall in the picture. As we were walking back, Bob had this rediculous idea that we should try and run the WHOLE marathon. even though we'd only trained for a half and the longest prior training run was 10 miles. ideally you want to run at least 20 miles in prep for a marathon. so i say yes. geez.
they also had the option of a 4:30 AM start (for those that want to walk and those who cannot finish it within 6 hours), instead of 6:30 AM. The first goal, obviously was simply making it across the finish line. secondly we had a goal of making it within 6 hours. up through 20 miles we were AHEAD of pace, but feeling tired. by 22 miles i was done. i tried to keep up, but my legs were shot, i was starving, and had an upset stomach. i told Bob i would truly have no hard feelings if he wanted to continue on (running), but i for one had to walk. But even with my walking, i could still make it across the finish within 6 hours. so i preceded to walk most all of the last four miles. i started to run when i saw the finish line in the distance and my right hamstring started to cramp up. so i walked to within probably 150 yards and was able to run strong through the finish with less than a MINUTE to spare!! less than 6 hours.
now here's the amazing and sad part.... my first two marathons i ran in roughly 5 hours 38 minutes. this marathon, that i was ILL trained for.. i ran in just 20 minutes more. and the last few weeks of training i was running only once a week. and i broke the cardinal rule, "nothing new the day of the race".. i ran a marathon with only half the training, i ate a nasty protein bar for breakfast that i never tried before and brought along some cookies on the run that i had never tried before. no wonder my stomach was upset the whole time. so i ate nothing but a few pretzels over the last 5-6 miles. BUT I FEEL JUST AS GOOD AS I DID AFTER RUNNING CHICAGO!!! how can that be??????? don't get me wrong, i HURT! but i can get up and around well, even climbing up and down the stairs. i will however be taking an unscheduled day off tomorrow, to fully recoupe. i didn't want to , but i didn't plan on running a full marathon either.

Wednesday, March 07, 2007

IEP History!

We had a great IEP meeting on Josie this morning. An IEP is an "Individual Education Plan" in school for kids with learning disabilities, behavior disabilities and/or physical disabilities. Josie has had one for three years now because of her physical disabilities.

and last year at the review we were disheartened to learn that they recommended Josie be held back another year in pre-school. This morning they reported that this last year was great for Josie, and in fact, they don't even feel like she needs an IEP anymore!! she could always meet the "physical" eligibility for one, but developmentally she is fine. she is on par with everyone else and there would be no reason to have a "para" assinged just for her. so we discussed wither discontinuing the IEP after this school year or as a safe guard, has some minimal, general IEP in place in the event she would start to fall behind.. even even that would not be necessary really.

So, awesome news for Josie!!!!!!

Sunday, February 25, 2007

Follow up visit

Josie went back for a five day surgery followup (usually 10 days, but he wanted to check how her healing was going) last Wednesday. everything looks great. we'll go back in 6 weeks to see how she has healed and determine at that time when to put the rod back in. i'm getting ready to take her bandages off for good. she's been itching like crazy due to the tape.

Tuesday, February 20, 2007

Post-op Day Two 02/17/07

well, we're home! Josie got discharged around 11:00 this morning.
she is doing okay. VERY grumpy and angry and complaining of itching and pain. but for the last hour or so she's been great - sitting up and playing with stickers and watching a movie on the TV.

she does have some "suspicious" bruising that i have paged the nurse about. i didn't notice it when we left the hospital, but maybe it was there. i've drawn a line on the clear tape to see that it doesn't get bigger and i took a picture.

Post-op Day One 02/16/07

well, where to begin? i forgot to bring my laptop power cord so hopefully i'll have enough juice to get this email out in the first place.

things didn't go as planned today. the surgery itself was fine but once she was closed up the doc noticed her skin was blanching (like how your knuckles look white when making a fist cause there is no blood getting there) over the lower cradle that has been sticking out for some time.

so he wanted to watch if for a few hours to see if it went away. well, the blanching got better but now there was a "bruise" developing which gives alarm to some deep tissue bruising where that cradles been pushing against the skin.so, Josie went back into surgery later this evening to "release" the expansion he did this morning to see if it helped. it didn't really so ultimately he took the left rod out, leaving the top cradle. (cradles are the top and bottom "circles" that attach to Josie's ribs).

the next step will be to put a new rod in at some point. it most likely won't be a rib to rid rod again, but a rib to lower spine rod. it all depends on hos Josie responds to not having a rod in that side any more. if she continues to breath well, etc, then they may wait until Josie is due for another expansion.

which is another thing. because of josie's disorder, her bones (spine) grows very very slowly and minmally and having an expansion every six months may have proved too much for her. we might go a whole year or so before the next expansion.

hopefully she can still go home tomorrow. i've decided to stay at the hospital tonight due to the freak "blizzard" we got. i don't know if i'll have anough battery to email you tomorrow until we get home. i will send a short one if for some reason we don't go home.

well, better go. thanks for the continued prayers. today was kind of a set back, but the doc treated it very aggressively to actually have better results later on.

Pre-op 02/15/07

Just got back in town. pre-op was a breeze. the've got this new "spray" can for numbing the arm to give shots. it's an aerosol can that "freezes" the site and numbs it for a few seconds. it worked GREAT for Josie. MUCH better than that white cream that doesn't usually work.

okay, here's the details:
Josie is scheduled first up (7:30am). we need to be at the hospital at 6:15 which means leaving our house around 4:30am again.

but when we get there, there is a chance that her surgery may be postponed or canceled all together becuase the hopspital is FULL. in one day recently they had over 200 admissions. but we won't know until we get there!!! hopefully we would just have to wait til later on in the morning or afternoon. of course we're hoping for it to go as scheduled.

secondly, there is a 50/50 chance he'll only need to expand both rods and not replace one. if so, we could probably get discharged tomorrow too! but we're still "planning" on a replacement and being there a couple days.

Surgery is back on!

Surgery is back on for THIS Friday! that new cream we got cleared up her spots in three days and she is over her cold, so surgery of the 16th wll go on as scheduled. Thursday will be pre-op day. We don't know yet what time surgery will be on Friday.

this is great news because they are replacing one rod and she'll be in the hospital a few days (2-3). and Monday is a holiday and we're off work, so we have a "buffer" day in case we need it.

Thursday, February 08, 2007

Surgery Postponed

I just got the word; surgery needs to be postponed until her back is completely clear of the psoriasis (on the incision sites). The Dermatologists thinks this new cream combination could clear it in a week or so. this also gives Josie time to get rid of her cold/cough.

We need to call the Doc as soon as it's clear and they'll try to get Josie into surgery that same week that we call.

We are disappointed but, Josie's health is the main concern and we don't want other complications arising from either the cold or the psoriasis. the last time there were complications she almost died in Texas so it's better to be safe.

Thank you for your continued prayer and support.

By the way, some of you have inquired about Kevin's health. My appologies for not updating. He is doing great. He's been out of the hosptial for two or three weeks now. i believe he was going to go back to school this week. so far, everything is excellent for his recovery.

Tuesday, January 30, 2007

Josie's Song!!!!!!!!!!!!!!!!!!!!!!!!!!

hem Hey everyone!
One of the many, many gifts we received from Give Kids the World was a free, personalized song for Josie. A company called Songs Of Love in New York makes personalized songs for children with life threatening illnesses or lifetime disabilities. You submit a form with Josie's info, things she likes, etc and they customize a song just for her - a one of a kind. and it came yesterday!!!!

it is sooooo cool. they mention the street she lives on, cami, taylor, tracy, me, dolls, spongebob, puzzles, playing doctor. they have developed a "family and friends song download" program. for a minimum donation of 99 cents anyone can download Josie's song. Just go to www.songsoflove.org and click on the family and friends song download link (bottom right of the page). then you type in Josie's last name and her record number - 11007. it costs them $250 to produce one song so obviously donations are important.

the only thing that was incorrect on the song was our street. they say "new hock" instead of NW (northwest) Hoch (hoke). they have you phonetically write out information like names and stuff. but i didn't expect them to use our street too. but hey, it's a great little song. i wish you could listen to it before downloading it but the site won't allow it. and i'd love to send you all a copy via email, but it's copyrighted and i want to honor that. so, if you want to spend .99 on a funny, great song about a little girl you know, have prayed for and supported for the last (almost) 6 years.... check the website out! it says you can hear samples of songs on the website.

For a Kevin update... he went into rehab last week and he was released Monday!! i believe they are going to continue to work on things like his speech, though he sounds fine talking to you. but so far everything is a-okay! he came over Sunday for Taylor and Cami's birthday party at our house. (they let him out for the day prior to his release the next day).

Monday, January 22, 2007

Kevin Update

We went to see Kevin after church yesterday. He has been moved off the ICU floor and up to the 7th. He continues to do well. He looks great. He is angry all the time. He won't answer most questions asked of him and he shows his annoyance of having to answer any question what-so-ever. It's my understanding this "hatefullness" is very common with brain injury/surgery patients. but i can see how it would be hard to not take it personally. But so far all test have been positive. I hope he continues to progress and be out of the hospital soon.

The kids and i made a snowman family portrait out in our yard yesterday too. we finally got a 'real' snowfall this weekend. i didn't measure it but somewhere around 5-6 inches i think. it was VERY pretty first thing Sunday morning. I'll post a picture of the snowman family tomorrow.

Thursday, January 18, 2007

What A Start To '07

January started off with Cami getting sick which turned into a positive diagnosis for MONO! She just started back to school this week. she tried to go to dance practice Tuesday, but left early cause she was tired and began to cough a great deal. overall she is feeling better, just gets tired easily.

Josie's psoriasis is basically gone, which just a couple spots the appear now and then - but they are still right on her incision scar line, so we've got to get them off there. Her surgery is scheduled for February 16 with pre-op on the 15th.

Taylor's nearing the end of his basketball season and it couldn't end fast enough. Basketball is just not his sport. He loves golf, is really good at baseball and showed great improvement in football. but this is his second or third season for basketball and he's really just out there to be with his friends. but that's okay, basketball wasn't my thing either. i played one year in junior high cause that was the thing to do - play every sport. but i didn't play the next.

I have decided (i can't remember if i said this in a previous post or not) that marathons have some sick hold on me and i plan to run one a year. this year Bob and i are planning to run the Philladelphia Marathon in November. my struggle was going to be NOT running a marthon this spring as well (with the marathon class at Washburn again). and i've stuck to that... well, close anyway. Bob is taking the class again , but instead of running in Lincoln, he's gonna run the Oklahoma City Memorial Marathon in April. and i have decided to run the HALF marathon there too. i'd like to run some saturdays with the class, but since i only need to train half the time (for half the distance), i have to force myself not to start running (with the class schedule) for another 4 weeks. otherwise i could find myself wanting to run the whole marathon, and i don't want to commit to that kind of training every weekend.

Tracy's 18 year old nephew, Kevin Johnson was taken to the ER late Tuesday night for some flu-like symptoms and general unresponsiveness and he was bleeding from his ear. in no time they had him in a CT scan and found a large brain bleed on his frontal lobe area. within hours he was in the OR where they opened his skull to stop the bleeding and remove a clot. he aparently had a genetic defect of a mass of twisted veins in that area that wasn't supposed to be there. they were the source of the bleed.

he is doing MUCH better than expected. they thought he'd need to be in a coma for a couple days, but he was showing responsiveness in the recovery room. later that afternoon they took him completely off the ventilator. he knows right from left and followed all their commands, he knows who everyone is, etc... But the docs are still cautious, of course. they pretty much say, we'll wait til he wakes up (fully) and see where we are (how he is functioning).

obviously his parents are devistated. i know his father (George) is barely hanging in there and i feel for him. His mother (Angie) seems to be handling it well, at least on the outside. Of course Tracy and i know what they're going through and can hopefully be a support for them.

Please, keep Kevin and the Johnson family in your prayers. For those in the Topeka area, he is at Stormont Vail Hospital in room 207 of the ICU (second floor, south tower). i imagine one or both his parents will be camped out in the waiting room until he's released.