Just RK

How could it possibly be October 31?  I feel like my current schedule is causing days to slip by without my even being aware. Not my favorite thing. Down Syndrome Awareness Month… and I didn’t hit the things I really wanted to talk about.  Does that mean I really didn’t want to badly enough?  Or does it just mean that I didn’t set aside the time I needed to, TV-free and post-bedtime, to formulate properly the thoughts into orderly paragraphs?  For those of you who haven’t been around since the beginning, here’s a few links back to old posts that might be of interest to catch you up on me, us, and life at our house.  The “first date” AKA crazy stalker guy from Montana, the proposal , finding out and telling family we were pregnant, ultrasounds and elevated risk , a day of labor , a special delivery . The favorite of many… the snip/tuck saga . Some hot topic posts… Prenatal testing , taking a stand (still missing it’s part 2) on a...

Last year Shutterfly sent out a great offer to many bloggers that brought the reward of free Christmas cards.  It made doing Christmas cards so easy and enjoyable, really.  I had gotten out of the habit of doing real cards at Christmas, but I really liked giving and receiving the cards last year.  Here was what we had for our cards last year… (Funny to me how the girls can look exactly the same, just with KiKi having longer hair…) So far these are some of my favorites for this year… From the Christmas card collection . From the Holiday Card collection . And the photo books … they are ALWAYS fun to do! This year, we got a similar offer (YAY!) and in addition to cards for me, they also allow me to give cards to YOU!  Three of you can win codes worth 25 free cards!!! That is worth commenting for, right?? So leave a comment on this post with your FAVORITE part of the holiday season. Is it parties? family traditions? presents? shopping? ...

I was divided today. I held Braska for a while this morning in the recliner in her room, as she went back to sleep after crawling into my lap.  I should have been taking a shower. But I just kept praying for the mother who would never know that feeling again.  (Unfortunately I know too many mothers whose arms ache for their little precious ones, gone too soon.) I enjoyed watching my girls go to dance class with their friends and do a GREAT job, prancing around in their Halloween costumes and being adorable.   But I had tears slowly rolling down my face as I thought about Maddie never dancing here again. (Though I happen to be quite sure she is dancing with Laynee and Carly right about now.) I drove all over the metro area today, between dance class and visiting PaPaw so he could see all the cuteness and get some hugs, then going to work and jetting over to catch the end of a birthday party.  As I drove, I got a very ill feeling several times, thinking how...

This precious beauty’s mother is hurting tonight. Hurting doesn’t even begin to describe it, I’m guessing. Little Madison passed away today after a very tragic accident. Please pray for her family. There are a couple more pictures of her sweetness on Braska’s blog . <a href="http://braskabear.blogspot.com/2011/10/mommy-life-madison-angel-too-soon.html"><img src="http://i185.photobucket.com/albums/x198/wish4rk/madisonbutton.png" /></a> (Please feel free to post this button and please pray for this family.

Cards WIN!!!!!!!!!! What a crazy game, and what a SUPER walk-off homer for Freese!!!!!  Haven’t been this excited about baseball in probably 15 years!!  Game 7—bring it on!

It’s all about perspective. It seems like I’ve said it 1000 times in the last few years, probably almost 6 years if I’m judging by the circumstances that I think brought me the most real.life.perspective. But lately it sure seems like I’ve been saying or at least thinking it more frequently. I don’t like having a job that eats up evenings and many weekends. But I’m glad that I was able to find one when I needed to and that I do actually enjoy working there. It’s all about perspective . $300 is just not a lot of money to feed four people completely for an entire month. But I’m thankful that we’re able to do it. And many people would feel ecstatic about having that much money to spend on food and necessities. It’s all about perspective. I’ve been really missing the community element lately, having a core group of friends whose lives intersect with ours at several levels like we have had in previous eras in our married life.  We have friends, good friends. But we do miss the...

There is nothing like a good swing in the hammock to brighten a mood.

Since I’m not in the right frame of mind for writing the things I just SWORE I would get covered this month, I’m going to refer you to a couple other things to check out. ~Keep on Spinning had a very interesting post recently… Prenatal Test for Depression .  I thought it was an intriguing perspective.  Glass half full kind of thing.  What are your thoughts? (Respectful, please, of course.) ~ Kellsey is having surgery Tuesday morning to join the g-tube club. Please pray for a successful and smooth procedure. Even though we’re on the way out (finally!!!), we are definitely big fans of the little device I first put off for months after it was first recommended.  It made me go back and look at the beginning of our journey with Braska’s “second belly button.”  And man was she cute back then!   There was the first procedure , some follow up , the report by B 1 and 2 , and then the conversion to the button from the tube. The first picture of the ne...

I hope you’ve been by Braska’s place to see her latest post.  It featured a picture from this morning… and I cannot get enough of that picture.  I see so much there.  I don’t know if I can flesh it all out in writing right now. But I did want to use it for a new siggy. So I played a little today.  I use Photoshop Elements for my various image work, blog designs, logos, blog buttons, and photo edits.  It’s not the big bad professional Photoshop, but I don’t have hundreds to spend on such things.  PSE works just fine for me. After some playing and a lot of changing my mind, I have ended with this…   I’m pleased. I had something different in mind, and maybe I’ll do another later. But I like it.  Credits to Lissa at HunnyBee Design and her Candy Town Kit for the papers and elements that I used to create this. Lissa also graciously did 3 awareness ribbons for me recently, with DS colors. They are here if you’d like to get them from her....

(To all you new friends from the blog hop… thanks for hanging around! I’m honored! If anyone has any questions about me or Braska, just ask!) It’s been a day of dance class, playgroup, and teaching the 3-year-olds at church tonight.  (All of that was Mommy and KiKi time… Braska hung with Daddy today just to be sure we get a bit farther in recovery from Wednesday’s eye surgery before we risk eye poking, dirt in the eyes, etc.) And since I’m tired and spent my evening watching the Cardinals WIN… (How much do we love Albert, yeah?!?  He’s not only a great DS advocate, he’s a darn good baseball player! tee hee)… I’ll just share this really fun card Julie gave me for my birthday. Too bad I’m recently back on the extra-super-healthy eating plan.  But the sentiment cracks me up!

Crazy Beautiful Love is hosting the Hoppin’ for 21 Blog Hop today. v So in my “free time” I’m gonna see if there are a few new cute kiddos to check out. (It’s so nice to see some of our good friends in the list already… Hi Vince ! Hi Kayla !!) Do I get double points for awareness today?  31 for 21 AND Blog Hop ? Oh!  And there IS a prize involved.  If you link up your blog to the Blog Hop, there’s goodies to be awarded! So go check it out ! If you’re hopping over from the Blog Hop, Howdy! Glad you came by!  I’m RK, mom to Braska (almost 5) and Kinlee (2 1/2), wife to M.  We’re in the St. Louis Metro area.  I’m into putting my kids in cute girlie clothes, bows, doing digiscrapping when I get a minute or two, Bears football, and currently a little Cardinals baseball.  I’d love to have you as a blog buddy, so leave me a comment and click on the “members” button on the right, and I’ll be sure to come check out your blog, too!

This is my post. My one for today. My daughter has Down syndrome. And it makes her pretty great, I say. There. I even managed to continue the official awareness of the month. Wow. Look at me go. Signed, One very “tuckered” mom, as my girls would say.

I’m worn out.  But I’m thankful.  For access to great medical care.  For NO months-long waits to get that medical care. For family who helps out in so many ways, hands-on, with gifts, prayers, or time. For friends who check in often, and who send smiles of encouragement. For my girl, who is some kind of miracle that she can have endured so much in her short life and still waltz into the hospital with the charm that is her calling card and win over all her new friends today. For my bed. I love my bed. Always, but especially tonight. Thank you for your thoughts, prayers, well wishes, and love.  We are blessed to receive them all.

Seems funny to rest after sleep, but that's the best plan for little miss. She has a pattern when coming out of anesthesia, and it includes a little nap after the first while of being upset and uncomfortable. Then she wakes and feels way better and usually is good to go.  She is napping now, so I hope we are better and heading home in an hour or so. But no rush... this is kind of nice.

She is sporting her cute fishie scrubs and announced to the world how she felt standing up there... 

Tomorrow we take Braska to Children’s for a trio of procedures.  Maybe.  Might only be a duo.  She’ll be having a modified Kestenbaum procedure, which is a rare eye muscle surgery relating to the specific type of nystagmus that she has.  This is to help correct the tip and tilt elements of her posturing among other things. She will also be having a dental cleaning and x-rays done by the dentist.  She has horrible terrors at the dentist’s office, so while she’s under with the eyes, he’s going to get in there and do a thorough cleaning and get good x-rays. And while they’re at it… the ENT, who will be working next door tomorrow in another OR, will be peeking in to take a look at her ears and probably put her second set of tubes in while he’s there.  I mean if you’re gonna knock a girl out, might as well take care of a few icky things at once, right?? We start the day early, but not as early as we’d expected. She should be heading back to the OR by a...

Happy birthday to me! Birthday smooches… always a winner.

I was falling asleep during the football game tonight. The game the Bears won! Woot!  But for ME to be falling asleep during football…sure sign that I’m beyond tired in a big way.  So glad for the win though. And now I’m doing my best to make it through the bottom of the 9th to see the Cards win the NLCS and sew up their World Series spot. It’ll be fun to have the World Series in town again in two days. Bring home the win, Red Birds! And we survived another crazy busy, run constantly, overlapping events kind of day.  I need to really stop letting these happen, but what to give up? The job that eats up my weekends that we need for ends to try and meet, the community of local DS friends who are really stepping up to have great events, or the daily chores around the house and for the family.  Tough stuff to whittle down. But the fact that we have so many great things in our life as a family… win. Good night. The Cards just did it. World Series, come on over ...

I’m in the midst of a very busy season.  It’s a bit hard for me to keep my sanity when things are like this.  When the obligatory “how are you?” gets asked, this is what flashes in my head…. (Photo by JLMphoto) But I always say, of course, “oh, I’m fine.”  Or if I’m feeling more honest, “I’m doing ok, thanks.” When the truth is that I’m yearning for something like this to be my lot… (photo by dipity.com) Days like today… *Up at 8 after nicely being allowed to sleep in a little. *Scrambling to get two girls fed, dressed for dance, myself ready for work, and out *the door in just under one hour. *9am leave for 30 min drive to dance class. *930 to 10 am at dance class. *10 am head back home to have M grab the other car and we all go to the Y. *1045 arrival at the Y. Quick change for Braska from dance outfit to swimsuit for lesson. *1115am get Braska dressed, assist with KiKi finishing lunch in the lobby with Daddy. *1130 begin work...

The precious Little Miss D’s mom recently made reference to the fact that her little one hadn’t ever slept in a crib.  I asked her about it because, well, I’m just nosy that way. Today she replied and explained a bit more…  and it brought up something I’ve been meaning to discuss anyway.  What were the sleeping locations for your kids when they were babies? Same room, different bed? Same bed? Different room altogether? (That one’s my fave!!) Or just wherever the heck they wanted to sleep? So my comment is below… share your experience.  The same for all your kids? Or did your kiddo with DS do anything different in the sleep realm? I find this stuff really interesting. Thanks for explaining!! :o) I can't stand to have the girls in the same room, let alone in my bed.  I'd never get a wink of sleep... every breath, every little sound wakes me.  And that doesn't make for a pleasant mommy the next day! So Braska was in our room for a few w...

It’s been a long day. Check out my Twitter page if you want to see more details. Lots of tweets today.  That’s a rarity, but it was one of those days.  Synopsis… Early morning walk in the dark. Cleaning job after dropping girls at Parents Day Out “Thursday school.” Naps. Dinner. Concert. Late night blogging. Very tired. But a good day.  If only the Cards had won… Be sure to see Braska’s school pics if you missed that one… kinda cute.

Kinlee is so interested in learning, just like her sister.  (Letters, numbers, shapes, colors, and many sight words…these were all favorites and she had them down before she was 2.)  The difference is that it comes SO much easier to Kinlee than Braska .  Because we work on these things a lot for Braska’s sake, KiKi has become as interested in the constant “teachyness” of how we do most all activities. So here she is, at 32 months.  One of her favorite activities recently is for someone to write her a story about our family or what’s going to happen that day.  Then she reads it.  That’s it.  She loves to read.  And *finally* (ha! at 2 1/2?)) she’s able to do it largely herself at the “easy reader” level.  This is one I just jotted down while we were making our grocery list this morning, and this is not after rehearsal and repeated practice. We’re proud. No doubt.  I hope her interest in all things learning and educational wil...

Braska went to school. KiKi went to her “school.” (Parents’ Day Out at a nearby church. She LOVES it.) I got a lot done at home.  That feels nice. Meltdowns during backyard play. No naps during naptime.  Sometimes they just don’t listen.  That doesn’t feel nice. Dinner all at the table together.  Talking about the day. KiKi sharing all about how school went, who she played with, what snack was, what her craft was, when she can go back again.  That feels nice. Visit with friends tonight, one couple who was watching the girls while we visited another couple with a new little man with DS. Adorable.  That feels SO nice. Home and battling sleepy girls, dramatic 2-year-old, flailing, yelling, and flopping. That doesn’t feel nice. It was a full day, but not bad.  Now it’s bedtime. Sleep will be here in minutes.  That will feel the nicest.

It was time for a new computer desktop for Grandma C. She still had the one I did for Easter on her computer.  So I used pics from the recent wedding in the fam to do a new one… cute grandkids, they have, yes?

Part 1 and 2 if you’d like to get the full story… Ok, we’re working through the Present Level, ready. Social/Emotional/Behavioral ~Nebraska has improved with looking when her name is called and responding to requests, when wait time [is] provided and cues [are] given for support. ~She is doing better coming in from the playground with her friends this year. Several of her peers act as buddies to hold her hand and assist in the transition.  She really likes to have her friends near and is building friendships. She can name most of her friends. ~Braska’s attention has improved in the classroom. She is able to sit on the floor with the whole class and attend and participate with a few cues given during a 10-minute lesson.  Sometimes body will needs to be repositioned due to her focus being on her friends instead of the teacher reading the book or presenting the lesson. Speech/Language ~Braska is having success answering yes/no questions with a ver...

These stories come up occasionally… and people seem to have different perspectives on them.  So I thought I’d invite discussion here. Read here and here , as an example at one school.  And then please share your thoughts (politely and respectfully, of course).  (Photo from wfaa.com) I’ll say up front… I think it’s great. I think she’s clearly adored. But not everyone agrees.  What do YOU think?

Part 1 is here if you missed it… So there we are all sitting around the table, and it’s time for the rest of the Present Level, broken down into the therapy areas. Some tidbits…not a complete list. Gross Motor ~ Braska demonstrates overall improvement with her gait speed in a one on one setting.  She is able to fast walk 30 ft or greater both independently and with hand held with few to no dropping episodes. This (dropping) has decreased significantly. ~Nebraska demonstrates improvement with stair skills. She is able to ascend with alternating feet with one hand on the handrail when given verbal cues to do so. This is not yet consistent but she continues to show improvement with frequency. ~Braska has difficulty with trunk rotation activities and will frequently place her hand down on the surface for support or compensate by turning into a side sit to avoid completing the movement. ~Some jumping skills are emerging but not consistent. She is able to...

IEPs can be scary.  Some people dread them.  Some people just ignore them.  (I’ve been shocked at the stories I’ve heard at our school and in our area about parents who don’t even attend, or who just sit and listen and say, “Whatever” in a non-caring way.)  I don’t dread them or ignore them.  I view them as an important part of the process of educating Braska and getting the best services for her that we can. There are a lot of parts of the IEP, and this isn’t really meant to be a technical lesson on that process.  Though if you have questions, don’t hesitate to ask… I may just refer you to pros in your area. There are great training organizations out there who can equip you very well.  Around here that’s MPACT , and I’ve been to several of their workshops. But feel free to chime in with experiences or tips or your favorite parts of the process! The first part of the meeting is always the most important part: FOOD!  I never show up to an...

Time to address a couple questions… I’ll try to keep up with these better as we move forward.  I like questions, as they help me know which direction to go blog-wise. Thanks! Ellen Stumbo : I want to know more about that gathering you have! What is it? What is it called? Where did it happen? Why? Well, Ellen, plan to be here in town next year Sept 28 and 29!!  This event is a women’s conference our church puts on each year in the fall.  This year we had women from 14 states attend!! It’s a great weekend, Fri evening and Saturday.  It’s called Daybreak Women’s Conference, and here’s a link to this years website .  We were blessed to have Lysa TerKeurst from Proverbs 31 Ministries as this year’s speaker and Laura Story , known currently for “Blessings,” as the featured leaders for this year.  Next year will bring Vicki Courtney as the main session speaker. ch: Okay, Queen of all things organized and documented... Pudge's 1st IEP is Monday......

Tomorrow is Braska’s IEP .  Normally I prepare well and bake lots of goodies and go in ready for a smooth day. Tomorrow I will be there, ready for a smooth day because we have a great team.  But the baked goodies will not be made by me.  Purchased from quality bakers though.  That’s still gonna count, right? So if you have any questions about IEPs in general or Braska’s specifically, feel free to ask.  I’ll update afterward.

Quick update for those who have been emailing/texting about KiKi… I called the Dr. today to check in and let them know her temps and such, expecting for them to tell me to call back in a few days if it wasn’t better or something.  But they wanted to see her an hour later.  So in we went. By the way… if ever you come here and there’s not an update in these situations, feel free to check my Twitter feed over in the right margin, or follow me on Twitter .  Sometimes that’s just way easier to shoot out a quick info bit.  Just sayin’. Dr. A saw her and agreed she looked pretty pathetic.  Her temp was 101 when she got up this morning and she seemed to feel ok, but then through the morning the temp went up and her demeanor went down.  She said a few times that her ear hurt, and then said she had “a leg ache” in both legs a couple times as well.  I have learned that I never go to our pediatrician’s office without our thermometer with me. (I’d take a di...

If you’re in the St. Louis area and shop here…. make sure to ask your cashier to “round up” when you check out to donate the change amount here… Thanks!!

This little tot didn’t feel well this morning. This little tot was whiny…which isn’t necessarily uncommon. This little tot woke from nap ok but flopped around on the couch for a while. This little tot fought off a temperature check.  For a minute. This little tot had 102.7 temperature. This little tot reluctantly took in some applesauce with ibuprofen mixed in. This little tot told her daddy, “I am going to have vomit in my mouth.” He asked if she did have some already, and she said no.  “I am going to have vomit in my mouth in a minute.”  This little tot then chose to share that ingested applesauce with her daddy just a bit later, before sufficient containers could be arranged. This little tot chose the right parent for that exchange. This little tot then seemed to feel much better. Perking up a bit. She did say her ear hurt at one point. This little tot and her 101.6 temperature just went to bed, per her request. Little heart racing and starting...

The girls both know the entire fight song for the Chicago Bears. Every word, though they might not know what they all mean.  (T-formation??) We sing it often, and the request it in the car many days on the way to school. Give us time, they’ll be pros and experts on all things football before ya know it. Rach caught this today, after the girls had performed the entire song with me spontaneously but we hadn’t captured it on video.  I still hope to get them to do the whole thing… it’s darn adorable.  Anyone out there from the Bears organization?? Comp us some great suite tix and we’ll bring this action to you live! Until then, here’s a snippet.  If you want to see still pics of the day, Braska’s got you covered over there .

Because my daughter has Down syndrome, I’ve met a lot of great people. Because my daughter has Down syndrome, I’ve come to this city. Because my daughter has Down syndrome, we are a part of a great school. Because my daughter has Down syndrome, I’ve been given reason to be on a superb team of support in our community. Today all these elements came together.  Today I sat with two groups of ladies whose lives connect through my tiny little girl and enjoyed fellowship in the midst of hundreds of women.  But none of these special ladies would be in my circles at all if it were not for my daughter, who has Down syndrome. How blessed I am to have this phenomenal group of women around me.  How blessed I am to have Braska’s team at school be full of those who are also excited to praise God alongside me, learn about how to be more faithful and in tune with His plan, and determined to allow that faith to make them better parents, teachers, therapists, and friends. How...

Grab This Button Can’t believe it’s October. Birthday month. DS month. World Series. Football. Fall weather.  All good stuff. But wow, has the time just flown by at warp speed or what?? Not sure who all is still out there, but if you are and you want to know something, DS or not, silly or serious… throw it out here and I’ll give it a go.  Rarely is a question asked that I can’t formulate a wordy answer.  No shock there. Today I’m spending the day with friends that I would not have known had Down syndrome not been part of the plan.  We’re not gathering for Down syndrome. We’re gathering to share and enjoy hundreds of other Christian women gathered together to worship, learn, chat, and laugh.  The fact that my two worlds collide in this way is no small thing, and no accident, in my opinion.  I am so very blessed to have this group around me.