Just RK

Recently, I've been visiting the DS Forum on iVillage . The other day there was a post from someone that I thought was especially impressive. I asked for permission to share it here. Take a minute to read it and please be praying for safe arrival of the little one. ___________________________________________ Here's our story: Part I Young couple elopes to Vegas in Oct 2005...what happens in Vegas dosen't't always stay in Vegas as we conceived little Emily Grace there. Super excited about our new little girl soon to join us. Find out after quad screening we have elevated risk for downs. Shocked-we're only mid 20's (big misconception that it only happens when you're over 35) Hold out hopes and stay positive. Have level II found several soft markers. Still hold out hope and have amino. Found out week later Emily does in fact have Downs. Mourned the loss of our typical child dreams for about one day and then look at the blessing that we've been presented. Ou

This morning we packed up our stuff (6 trips up and down the stairs to the car...ugh), vacuumed the carpet to look spiffy for when Rachel returns, and headed out. Well, not out exactly. I took Braska to get her glasses adjusted, amazing what such a little person can do when yanking off her glasses with one hand. Then I decided to go down to my in-laws' place to pick up a few things we forgot when we left Tuesday. And since I was down that way, I went by a hair place I found when we were there last weekend. They had time to get me in, so I dropped Braska at her grandma's and went back to get all fixed up. Here's the goofiest face ever, I think...mid-foil processing. Here's a few afters...it didn't really work to take one straight on, in order to get the full effect of the color outcome. There's a bright red and blonde going on in there. An interesting thing about the stylist who did my hair...she asked about if I had kids, etc. I chatted about Braska and her st

This was my view this morning as I stepped out onto the balcony. I will most likely never have a real vacation home, and that's ok. But when the stars align just right (or my sister goes out of town), I have access to the next best thing...a super sweet condo with high ceilings, comfy sofa, wireless internet, a little granite and steel, garden tub, laundry room, and plenty of very large TVs. Sound like a decent resort, right? And the cost... can't beat it, no way, no how. Little sis has come a long way. So why vacation at this time? Well, we were here (St. Louis metro) for Christmas, went home that night, and then turned around and came back, just Braska and me, the next morning. Braska's g-button stoma site was looking a little concerning to me, having changed some in the last few days, so I called her GI and they agreed they needed to take a look. So on the road again we went. Since I'm back again and Rachel's gone till the middle of next week, why not h

It was a fun weekend of family frivolity. We have a picture to prove it. If you need further proof, check out what Braska or Muncher had to say about it.

Hope you all have a wonderful day with family and friends!!

I don't live in St. Louis. I used to, and I hope to again someday. But I do receive email newsletters and such from the Down Syndrome Association of Greater St. Louis as a resource and to familiarize with what they have going on. Today I got the Friday Blast email, and it had a note about St. Louis Life . St. Louis Life is a new residential facility and program for young adults (18 -30) with developmental disabilities in O'Fallon, MO. I just finished looking through their website and watching the video tour of the site. It's beautiful! What an awesome place and program! I have no earthly idea or way to know where we will be, where Braska will want to be, or what will be happening in our lives when Braska gets to this stage in her life, but I just love that something like this is out there, providing a great place for people to spread their wings a little. That's encouraging to me. Check it out. ALSO, in the info from DSAGSL was a link to some pics from their Youn

There have been so many times in the last couple weeks when I've thought of things I want to talk about or just throw out there for fun. I need to start carrying a little notebook around with me in order to jot them down. I could put them in my PDA/phone, but I'm not so good with the texting even if it is full keyboard. So here's a few semi-random things that I meant to give some time to... aren't you lucky you stopped by today?? ______________________ December 14, 2006, the day we brought Braska home from the hospital...finally. Then and now. I hope to try to recreate this pic every year. It's the first one after the day of her birth with she and I together. We've come a LOOOOOOOOOONG way, baby....you and me both. _____________________________ I watched a show last week--I won't mention it or link it because I don't want to even accidentally be blamed for endorsing it--that I normally purposefully avoid even though it's watched in the other l

When we travel back and forth to St. Louis, we like to listen to audio books on CD. Through our Thanksgiving "tour" and a little time listening in town and some in the house while I'm cleaning the kitchen or something, we've covered four books. Here's the list... King of Torts by John Grisham It Ain't All About the Cookin' by Paula Deen Vanishing Point by Marcia Muller Fingerprints of God by Greg Iles That's impressive for me, as I don't read fiction at all...but in the car it's good. We generally forget to pick up the books before we leave, so we swing by the library on the way out of town and I run in to grab 4 or 5 options that look interesting in some fashion. I did pretty well this time. King of Torts was interesting to follow, and we kind of "called it," figuring out the order of events at the end, but that's ok. Paula Deen's book was one I listened to while M was sleeping...he wouldn't be going for that in his w

Finally we got some actual snow, the kind that comes down all day and night and is so darn pretty to watch! Granted, we had to drive in it last night, and that was no fun. Even in town it was pretty hard to see and navigate with the heavy snow and the wind, but we made it back home. A funny thing about this snow storm...my husband and I discussed last night how our church would notify the 1200+ people who would normally be there on a Sunday that there would be no church if they chose to cancel services. We weren't sure. Maybe a cancellation list on a local radio or TV station? We found out this morning...I got an email. (The wind is bad at our church, as it sits in a wide open plain in the middle of corn fields outside of town, so when it snows, it's always way worse at the church. But this is the first time they've cancelled in the 6 years we've been going there.) And to add to that, I also got a text message from our old church, where I occasionally still show u

The one-day trip that was supposed to fill last Thursday spilled into Friday. When we came out of the doctor's office to the choo-choo bridge (That's what we call the big glass walkway from Children's to Barnes Hospital and the parking garage...it has a train running all around it way up high.) it was snowing and already getting dark. I called my dad for an up-to-the-minute weather report to see how things were looking on the route toward home, and it was quickly determined to be more risky than I care for when attempting the trip. Instead we headed south a bit to the in-laws' place. (Have I mentioned how handy it is that they're just right there?) It turned out good that we stayed til the next daylight, as the road home was littered with cars, semi trucks, and a few toppled SUVs in the medians and ditches. It wasn't that there was so much snow, but there was a layer of ice on everything except the main road itself. I can imagine that in the dark and drizzle

Saturday I was at Wal-Mart shopping for a few items, more than one of which was in the baby section. I've always thought that when people are actually shopping in the baby section, they seem to slip into a friendlier mode, talking to others who are also in their world, discussing ages, genders, and latest milestones of their kids. As I was standing in front of the shelves full of baby foods, cereals, and juices, there was a lady who came up from my right side. She was talking to the man a few steps behind her who was dutifully pushing the shopping cart piled high with their coats and scarves. There was no kid in sight. I should specify that she was talking LOUDLY. It was almost as if she was unabashedly inviting people to stop and listen to the earth-shattering things she had to say. As she walked up to where I was looking through the Graduates items for Lil' Crunchies , she stood about 12 inches from me and sighed very loudly. She said, apparently to the man, although she didn

On Thursday I received an email from a senior editor at Consumer's Digest. He said he had been Googling for a story about people who have used a cleaning service, and apparently he happened upon this one . How weird is that? He asked if I'd be interested in talking to a reporter. I was in St. Louis, so when I checked my email that evening, I replied that I would be happy to chat with a reporter. He wrote back to tell me who would be contacting me. So the reporter called today. She was super nice, and we talked for almost half an hour. I just talked about my experience with Merry Maids and why I stopped using them. The bottom line on that is this...Since you have to have the clutter put away for them to clean, it wasn't worth the price to have them come and basically just wipe down the shower walls, kitchen sink and counters, dust, and vacuum. I'm not trying to be derogatory toward them, but in my situation, it wasn't what I needed. I need someone to come in who know

I try not to repeat post titles, but this one is destined to be a fave. I can't believe I've circumvented it for all this time already. We are headed for St. Louis again today. We're going to aim to do a one-day trip which means 3 hours down, get glasses at St. John's, then to Children's for swallow study and visit with Dr. R to check on the g-button. Then we'll race home to try to catch the Bears/Redskins game tonight. (Yep, that's right, we get NFL Network. Sorry to those of you who don't.) God give us travel safety, good visits, great people to work with, and help Braska be in good spirits. Amen.

I love snow. When M got home from Tuesday night MTG with the guys late tonight, he came and said it was snowing. I got all silly and did a few jigs after he opened the blinds and I could see. This is my view...I could watch it all night. We probably won't get much more than 1/2 inch, but it still counts in my book.

I didn't accomplish nearly as much today. This is a peek from my perspective for a slice of my day. That's Braska on the left side, Cede (say-dee, as in Mercedes, her full name) on the right side, Belle on the foot of the recliner snoozing on my leg, and my computer, obviously. And yes, I'm still in my PJs in the middle of the day. Perk of working at home. Funny as it is, this is not really a rare occurence in a typical day for me, except we don't always get to have Cede for a visit. Believe it or not, I did get some work-work done during this time. Yeah, I'm that good.

Just finished making dinner. Like with ingredients combined to create parts of a meal, all together making what most people might call "dinner" or "supper." Here's the thing. I don't cook. Now, mind you, it's not that I *can't* cook, it's that I just simply don't. Why? Because I'm married to man who doesn't eat real food, and I have a daughter who also doesn't eat. And I got tired of cooking for one (me), usually after I had "cooked" for one (him) in the form of mac n' cheese or some such boxed item. SO...therefore, I don't cook. I would be happy to live on Raisin Bran, even a generic. Yeah, that's how far I've fallen. When M is busy or it's just me and Braska, I practically do live on it. Throw in a Slim Fast shake here or there, and I'm good for a long time. I used to cook. Even when I lived alone after college, then when I had a roommate, and even at the very beginning of our marriage, I did ac

I'm due for a post. It's time to put up some kind of witty story or interesting idea or thought-provoking question. But I don't have it. I mean, not right now anyway. I spent a long time putting up info on Braska's blog , and I don't have anything left. Maybe it's because I'm all congested in my nose and breathing with my mouth open and I just want to go to bed. Maybe not...but either way, I'm not worth much for the moment. So I'll spare you further rambling... here's looking forward to a fresh start tomorrow morning.

We're ending day 6 of a 7-day family/friends tour of Missouri. There are alot of paradoxical elements to family visits. On one hand it's great to visit and kind of relax, but on the other hand, we're ready to be home and in our own space. On one hand it's nice to get away, spend time in the car together, and listen to some good books on CD, but on the other hand, after quite a bit of time, it'll be nice to not have a trip over 15 minutes for the next week or so. To recap...Weds: Our home to my parents'--5 1/2 hours. Thurs and Fri: No driving!! Saturday: My parents' to friends in Columbia-- 2 1/2 hours, then friends to M's parents' place--2 hours. Making a triangle in East Central Missouri...priceless. Tomorrow we'll go 35 minutes to Children's, whole day of visits, same trip back here, then 3 hours home. On one hand it's nice to let the hosts do their thing, but on the other hand, we tend to like things our own way. On one hand it'

Pam at Rhett's Journey tagged me for a meme of what things we're thankful for. I've meant to do another one of these for a while, but obviously haven't gotten around to it. (Reminds me of a wooden coin-like thing I had when I was younger that had the letters TUIT on it. It was round. A round tu-it. Get it... I always think of that.) Anyway....... Since it's Thanksgiving Day, it's about time I get over my procrastinating ways and get to it. ~I'm thankful for a sound mind and good sense. I know that may be debatable in the opinions of some of you, but I've seen some disturbing examples in those around me lately of a lack of sound-ness. It makes me very thankful that I have the ability to consider a situation, review the options, and make a sensible decision. It's no small thing. I still goof up, but those seem to be fewer and less severe. ~I'm thankful that one year after living through the heartbreaking events of Braska's arrival and diagnose

If you want to get caught up, all the way, then click here for the backstory . So I rested and slept and thought and waited until about 2 am. The contractions were getting more intense, and although they didn't hurt, I could tell something was different about them. I debated in my head alot about whether or not I was feeling the "right kind" of pressure that they kept asking me about. Finally, I asked to be checked again, and what do ya know...it's time! They called Dr. N right away and got me all ready to go. She got there in about 10 mins, got all gowned up, and said, "Let's have a baby." I pushed 4 times, over about 8 or 9 minutes, and there she was at 2:27 am. 7 lbs 0 oz, 19 1/2 inches. Nebraska Larae. I didn't have a bit of pain while pushing, either. Very cool. It was all very exciting for about 1 minute. One precious minute of bliss. The baby went to the warmer just across the room and my husband followed. The doctor continued to do her thing

One year ago today... It doesn't seem possible. It's been a year. I've been putting off writing this because I wasn't sure what all it would give way to in my brain. So we'll see... if you are up to reading the story, you might want to grab a hot cocoa or something and get comfy. November 20 has always been my parents' anniversary. That's what the date meant to me. Until it was decided about my 37th week that it would be a good day to induce me. My doctor was going to be out of town for Thanksgiving, and I didn't care to roll the dice on who else in the group I might get stuck with if I waited it out. Plus, I'm a planner, so I loved knowing when it would all take place. I'll spare you the icky details, but I was already "progressing" a week before, so the doctor felt like I would go quickly through the process. I figured we'd show up in the morning, have a baby by dinner, nice and easy. We arrived early that morning, checked in, got

Today my mailman brought me a package! That's always fun. And it was even better because the return address said "Secret Blogger"! Shelley from Life as Household 6 got my name! She sent me some dandy Christmas kitchen items and *drum roll please* Godiva chocolates! Woo Hoo! Thanks Shelley!!!

For those who are skimming and in a hurry, read this... if you are one who is planning to get Braska something for Christmas (I realize that's not all of you, of course) please grant us this wish... FIRST donate to one or more of these Angels , then if you choose, feel free to wrap up something for her. But I would largely prefer that you spend your money on them...they need every penny, and we simply don't "need" for anything. If this means that Braska has no "actual gifts" under the tree, then so be it! And the same goes for gifts for me! Let us know who you donated to, so that we may add them personally to our prayer list of special friends. Here's why... Lately, I've had an especially sensitive heart toward the kids of the world, especially disabled, who are in such poor conditions in institutions and orphanages. This is a new thing for me, not new that I care, but that it's been bothering me so much. Braska and I have been praying every sin

(I don't have time to write two posts...so for those who check both, sorry to be repetitive.) Wow, that was quick. I laid her on the bed, walked out, played a little solitaire on my phone because they said I wouldn't have time to even log on to my computer, and they came to get me in about 9 minutes. That's quick. They didn't even give her ANYTHING, just pulled the PEG out (that HAS to hurt!) and then put the new button in. I'll have pics later, but for now, we're good and grabbing a bite to eat before we swing by Grandma C's house on the way home. They said she screamed when they held her down and such, but by the time I returned to the room, she was calm and happy and not even red-faced. She is such a tough cookie! Thank you, God, for such a tough little girl!

Tomorrow morning I'll pack up little Nebraska Larae and we'll head to St. Louis Children's . She has her "switch" procedure at noon, at least that's what I call it. They'll take the Corpak out and put in a Nutriport . The good part is that there will be no more tube on the outside, nothing for her to grab and tug on whenever she gets the chance. This morning she got it the best yet, and I thought she was going to pop it out. I just knew we'd made it all this way and the morning before it's switched, she'd get it out of there and we'd be headed to the ER. But she was caught in the act and all was saved. Pray for safe travel, successful procedure, no complications, and that Mommy and baby don't go crazy in the car for 3 hours down and then back again. Aw, darn! Just remembered that I forgot to pick up a couple books on CD for the drive. Grrrrrrrr Have a good one...

I have 4 gift certificates, each for $25 off a purchase at CanvasOnDemand or GreatBigCanvas . My sister got us a nifty canvas print a few months ago, so I guess they want more of my business. It is a really super neat gift idea, I admit, but I'm happy to pass them on to whoever if you're interested. Just let me know in the comments and send me an email (in my profile ) with your snail mail address. First four get 'em...ready...GO!

Today was going to be a day to get things done. We didn't need to go anywhere, we didn't have any interruptions on the schedule. I was going to get caught up with work-work, make a dent in the backlog of housework, and start tackling the 10 x 10 pile of paperwork that I still half-heartedly call my office. I love productive days. That was the plan. The reality was a bit different. Braska was especially grouchy this morning, a pattern that's been increasing the last few days. It's not fun and completely out of character for her. I realized that we had never returned the syringe pump that we used for feeding, even though we haven't used it in over 4 months. After getting Braska dressed to go out, she spit up on her outfit...repeat twice. Eventually we got the belly settled and more clean clothes on, so I ran that over to the medical supply place. When we got back it was lunch time, M was home, time to feed him and then it was Braska's turn. She griped a

Just re-did the whiteboard calendar in the kitchen...This month is gonna be a bit busy. Some things aren't really "to do" but I'm sentimental, so remembrances still count. ( I realize I'm a few days late, so some have already passed...but you get the idea.) ~Nov. 1--10 years ago my husband rolled into town here with all his belongings in his car (and his parents' truck too, as I remember it) to move in and start all over after being in Montana for many years. I came then, too, arriving that night for my first weekend visit here. And the rest is history, kind of... he (and me, occasionally at first) has been here ever since. For both of us, this is up there with the longest we've lived anywhere, since we both moved alot as kids. ~Nov. 1--Appt with realtor (more on this later) to discuss improvements we plan to make and what priority is best. No, we're not moving. ~Nov. 3--Saturday singles...I'm meeting a couple times a month with a group of college

I suppose I wore myself out keeping up with 31 for 21. Or that's the excuse I'm going with for now, anyway. I still plan to finish The Story , but not tonight. I've got old pictures I'd like to share for the humor value, and I've got some ponderings that I'm curious to have some other perspectives on, so we'll get to that soon. For now, I need to finish the laundry, feed the child, and go to bed. Sweet dreams to all.

(Update: I've included the article...for those of you that had trouble earlier.) My long-lost buddy Mary sent me a link to an interesting article. Treadmill training helps Down syndrome babies walk earlier CHICAGO (AFP) - Treadmills can help infants with Down syndrome learn how to walk months earlier than traditional therapies, a new study has found. Parents of 30 babies with Down syndrome were asked to help their children walk on the treadmills for eight minutes a day, five days a week. They sat on a bench which straddled the machine and held their babies as the treadmill belt encouraged them to take steps. This exercise helped the babies learn to walk up to four or five months earlier than traditional physical therapy alone, the study found. More intensive training helped the babies to walk even sooner, the study found. The intensity of the training for half the babies was increased gradually after the infant could take 10, 20, and 30 steps per minute. The speed of the treadmill

I found this posted by Tom at Narrow Ridge . If you've never checked out his blog, it is SO worth a look. He talks of many things, including adorable Ian, his son with DS, and he has a perspective on such that always impresses me and makes me think. This clip is so encouraging to me. I can't wait til Braska tells me silly knock-knock jokes. That will be some fun day!

Today we bought a costume for Braska's first Halloween. It's not really a fave holiday of mine, but I like fall alot, and what's not to like about putting a little baby in a funny costume next to a pumpkin for a picture. Plus Halloween is Grandma C's birthday, so we celebrate the day for her really. Check back for pics from the FunFest at church on Wednesday night. (We're not even telling her Pop what she's going to be...it's a surprise!)

Tonight we went to a surprise party for our friend, Brent, but we missed the surprise. At least Braska and I did. But then we didn't know about it until like 5 minutes before then and it's a 15 minute drive. No harm though, and it was nice. Small gathering, interest-based group, as they all have MTG in common. I'm really just connected by marriage, so they let me come too. And who stole the show? Yep, that would be the tiny one . She seems to do that. I don't think Brent minded at all, as he's not a limelight kind of guy. And Braska had a peachy time watching her Pop play and banging on a very colorful table. It was a nice little party.

I have encountered plenty of people who ask "How old is she?" when Braska and I are out together here and there. They always guess her age about 5 months younger than she is, but that's ok, since that's what size she is. I have said several times that I can imagine it will bother me a bit more, although still not a huge deal, when she turns one next month and I see their reaction to that, as she still is in her car seat/carrier when we're in a restaurant or in a store since she doesn't sit up. Today, I met some friends for brunch. The waitress was a nice enough, very young girl, and she started cooing at Braska right away. That's nice. I don't mind, Braska likes the attention, and I'm proud of my cutie. The waitress asked her age, and I told her 11 months. She then said, "But she's not walking yet?" as she noticed that she was up to the table in her car seat/carrier. I just agreed and said, "Not yet." She said she h

I got a visit and nice comment from Rylie's mom today on Braska Bear and wanted to let all the cool DS bloggers (should I say bloggers who have children with DS?) out there know about a new friend. Check out her three adorable little girls and say hello!

Previously on "The story..." Part 1 , Part 2 , and Part 3 if you'd like to catch up or refresh your memory... The continuing saga... I didn't know a whole lot about the testing that is "normally" done during pregnancy. They gave me a folder full of all kinds of brochures at my first appointment. I read everything, but it didn't really mean alot to me. My husband and I talked extremely briefly about it and determined that we'd do the blood work stuff and, of course, ultrasounds, but nothing more invasive than that. I'm a chicken when it comes to needles and such, so the blood work was more than invasive enough for me. Due largely to unrelated emotional stress during pregnancy, I lost quite a bit of weight in the first trimester. These issues combined to cause the dr to want to keep a close watch on the baby's size, so I had several ultrasounds early on. I also wasn't really eating--even though I didn't have morning sickness like many,