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.