Just RK

I’m backing up my computer tonight, doing a little overhaul.  I came across a disk that wasn’t labeled.  This was all that was on it. Three pictures.  Braska just before she turned 1.  Priceless.

There are a lot of articles out there with tidbits of this and that about Down syndrome and other diseases and conditions.  There was the one last year about how people with DS lend a “cancer clue.”  It is interesting to read this kind of thing, I admit. This week I heard about news of a new link between DS and Alzheimer’s Disease.  It’s a reality that people with DS develop Alzheimer’s far earlier than the average person, often between 30 and 40 years of age, but now they’ve noted some more interesting connections. The article starts this way… Nearly 20 years ago Huntington Potter kicked up a storm of controversy with the idea that Down syndrome and Alzheimer’s were the same disease. Now the evidence is in: He was right. But this is the paragraph that caught my attention… The first paper, by Antoneta Granic and colleagues published online Dec. 23 in Molecular Biology of the Cell , provides the mechanism behind previous work by Dr. Potter’s laboratory showing that al

Practice makes perfect...if you need a siggy, ship me some pics and we'll get creative. (Click the image to make bigger.)

Shelley posted about 4-year-old Chrissie yesterday and I was so amazed at her story. We’ve been through open-heart surgery with Braska, but this little one’s situation is far above a “routine” OHS. Today she will have a very risky but necessary surgery to repair her heart in several ways. She is a miracle already, just in the fact that she is still alive. Her forever family brought her home on my birthday this last fall, so that makes her extra special, in my book. Please be praying that her surgery and recovery go well and without complications. Click her button above to read her story and to check on updates from her family. Edited to add: The surgery has had to be postponed due to Chrissie waking up with a fever today. It will be at least a month to be rescheduled. She is in a very dangerous situation with her heart in it's current condition. Please pray that she can hold on and be healthy so that the surgery can happen as soon as possible.

I’m not a NASCAR fan.  I don’t know anything about it other than cars drive around in a circle a million times and people seem to like it.  Personally, I don’t see how that could be exciting, but whatever…if it revs your engine, that’s cool. BUT—Kelli posted about this interesting tidbit on her blog, Living Life with E’s . (If you haven’t been to see her, go visit. She’s got some cuties for sure!) From Kelli’s post … NASCAR is holding a contest for a special design car to appear in the 2010 NASCAR Sprint All-Star Race.  A car design promoting Down Syndrome Awareness has been submitted.  How great would that be to see this car speed around the track in front of thousands of people! I clipped out some pics of the car, which are below.  Someone went to some effort to put this together, and the kiddo on the roof is pretty cute, which never hurts.  You DO NOT need a login to vote, and you can vote here every day for the next 8 days.  Wouldn’t it be kinda cool if we could get the

The girls and I got home yesterday afternoon, just as the gaming boys were packing the car.  We said hello and goodbye and off they went.  It was a really nice weekend for me, M had a good time, and the girls enjoyed Grammy’s house.  So win-win-win. I’ll take it. One of the projects I worked on was KiKi’s 1st Birthday video , and I finished it and got it on DVD, with some glitches initially, but I’m pleased with it.  It’s on her blog if you want to check it out.   My favorite part is the documentation of my little pastry chefs assisting me with the cakes. I didn’t get as much accomplished as I’d hoped, but it’s ok.  I had alot of quiet, some great conversation and yummy salads, and slept really well.  Thanks very much to Mr. and Mrs. H for the excellent accommodations!! 

(Granted, it's a cell phone picture in marginal lighting...but still...) I’m having a great time watching Jane Austen movies while I work on a variety of little projects. Some you’ll see soon, some are just for me. I’ve slept through the night, no waking little girls to listen for. My blood pressure is better than it’s been for a very long time, I’m sure. Happy Valentine’s Day!

10/4/09 While I’m working on organizing my pictures, I’m happening upon some “oldie but goodie” ones.  I think I’ll post them and you can caption them for me. Give me some clever, people!

The original plan was to have Kinlee’s birthday party this weekend, tomorrow, and to have a nice Valentine’s with the girls and M, probably doing something just the two of us, Gazelle-style, of course. Then M had the chance for a gaming weekend.  So 3 guys will be arriving at my house in the next couple hours from C-U.  They will eat often (constantly), be awake when people should be sleeping, and they will sleep when most are awake.  They will talk of tapping and attacking and creatures and lands.  They may even create some characters and and deal with a campaign.  Who knows. The options are endless.  I can’t even talk like this in jest without feeling like a geek . M’s the only one married, maybe the only one “attached,” unless something has happened very recently.  I mean, come on, would any OTHER girl allow this to happen on Valentine’s Day?  I think not. So what am I doing? Not staying there to watch and roll my eyes and have full sole responsibility for the girls 24/7 f

No? Well then, we should all be going here to vote for Buddy Cruise, Inc. and this chance at a new documentary about people with Down syndrome. Wouldn’t it be nice to have a new 30-minute film out there showing it like it is now, with personal stories, instead of all the old info that so many of us have received in our time in this “club”? It’s super simple, go over, vote for the Good Idea —yes it takes a log in, but it’s not asking for personal info or anything—and let’s help them get in the top 10! Thanks to Michelle for her Tweet about this! (Thanks to Courtney for the great tip... if you're on Facebook, you don't have to create an account! Go all you FB addicts!)

I’ve blogged about Reece’s Rainbow often. (Though not recently, I realize now.  Bad me!)  But there is now a new venture called Connecting the Rainbow that is working with families who choose to keep their little ones with DS in countries that don’t have any support system for them.  The goal, of course, would be a time when there is no need for international adoptions because the parents are keeping their little ones with disabilities and had a good support system in the society to care for them.   Grab This Button Connecting the Rainbow is focusing on Bulgaria right now, and they have a very cool opportunity to help right now.  Beyond Play is a therapeutic toy company that has agreed to give 15% of all items purchased from CTR’s wish list back to CTR.  It’s a great chance to buy a toy for their cause, or for yourself, and contribute to CTR at the same time.  I am so privileged to have come to know via blogs, forums, and email the friends who are making this venture happen,

Even though we are just outside of the Early Intervention system, since Braska turned 3 in November, I still get a lot of contacts and questions about the differences in EI services in different states and even other counties in Missouri.  Ria has been communicating with someone about this and posted their conversation on her blog today.  It sounds like this mom that Ria has been talking to has been put into the new model for EI that some places are transitioning to. She asked for some input into our experiences. In St. Louis County, next door to ours, the First Steps Program has been trying out a new parent-centered team approach with new parents and transferring families.  From what I learned via word of mouth from a few in the administrative side of the system, St. Louis County agreed to be part of a testing or trial program with this new approach.  So far, I’ve not heard many families who are pleased with it, unfortunately. To contrast the two, let me first summarize our expe

Ah, those were the good ol’ days. Dizziness, very low blood pressure, periodic aches, IV in the hand… oh yeah, and labor! Can it be? One year ??

Yesterday in doing the usually time-wasting routine of blog hopping and clicking names of people I don’t know on others’ blogs to check out their blogs, and so on, I found a post that struck me. Are you really prolife, really? It’s not a debate about abortion, it’s addressing those of us who believe killing a child both before and after birth is wrong. It’s challenging us, we who use that “pro-life” term. And I think it even hits on many of those I know who still prefer the “pro-choice” term, though only by a thread are they over that boundary line. Here are some blips from the post… (I highly recommend reading the whole post .) The author quotes C Everett Koop, the former surgeon general of the US, saying she sees being prolife as meaning that you “do things to give a person all the life to which he or she is entitled.” This means not just those who live in our home, but also orphans who live nearby or around the world. She asks this question… “Why are so few Christian families adopti

One docile. One screaming and/or whining. This is 90% of everyday. The other 10% is Kinlee being fun and silly.  I hope the ratio improves soon.

I can't believe I just filed our taxes. It was so easy this year. One W-2, a couple 1099s from here and there. The printouts from the church and Reece's Rainbow for our "charitable giving." Plug it all in and there you go. Who knew it could be so simple? In the past several years, I've owned a business that had to be dealt with in complicated ways. At least they were complicated to me, as I muddled through the process each April. We have written checks, large checks, to the IRS for several years. Tax refund?!? People still get those? We couldn't imagine that. With self-employment tax and all the fun that goes with contract employees and home offices... well, it was always a stressful several days to get them done and ready to file. I always thought I'd "have someone" do them, but it would have taken as much work to prepare things to take to someone, so I just stumbled through somehow. But this year...no business, no moving expenses, no houses bou

(Taken from Bethany’s blog .) She is an orphan living in a baby home in St. Petersburg, Russia. The exact same city from which (Bethany’s daughter) Nika came. Lera needs a family ... like, yesterday. She had a family committed to adopt her, but that fell through and now she needs another family. But time is not on her side. At age four, orphans are typically transferred out of baby homes. Lera is 4 1/2 years old ... and by the grace of God, she is still at the baby home. She has an $8,605 grant in her name through Reece's Rainbow. This is a HUGE start for any adoptive family. She also has another $2,000 that was raised for her by the first family that planned to adopt her -- they want to give that money to her new family. Could you be her family? Lera has Down syndrome. She is reported to be very high functioning and by the looks of her dolly, she is engaged in pretend play. She is reported to have a heart murmur, but no other health concerns. So ... what do you say? Could you b

Our buddy Jace is here in St. Louis at our trusted SLCH for his AV canal repair today. Please pray everything goes well and that the marvelous docs are able to fix him right up so that he’s back to bugging his big sister LC in no time!

Ok. Don’t tell anyone. (looking over both shoulders) As of today, we are not sick. Everyone is well, as far as we can tell, anyway. Braska went back to school today. It was nice for her to go, but I find myself counting the days to see how long it will take her to catch the next bug. We’ll see… The diet is still going well. No faltering days yet. I’m at about 14 lbs for the current loss total. Obviously it’s slowed down, as is to be expected, but I’m going to hopefully be able to get back to my workout, or at least the treadmill, this week since I’ve missed some when I was sick and treating the sick. Super Bowl Sunday is my first “day off” and I’m trying to figure out what kinds of things to take to snack on. Veggies are a clear choice, sans dip. Maybe baked chips? Thoughts? Anyone know some yummy but not too dangerous snacks so I’m not tempted to hit the really bad and very yummy stuff that will surely be there? I’m hoping this will be a pretty uneventful week. I’d welcome