Just RK

Since I can’t say it better myself…

The girls are tucked into bed after opening one present each. (From Miss Linda…more on that later. They were awesome!!!) They read a Max and Ruby Christmas book and then we read the Christmas story out of Luke 2, as they were cozy in their Christmas pajamas. I hope you all have a wonderful Christmas Day tomorrow!

If you’re a TRUE follower of our family blogs—and hey, who isn’t, right?—then you’ve already seen the posts on KiKi’s and Braska’s blogs showing off their cute Christmas wear pics.  If you’ve not seen them, go ahead.  I’ll wait.  Yeah, now, go ahead! Ok, now that you’ve seen the good ones, I’ll share some of the sisterly interaction that generally gets left in my pictures folder without making the cut for the blog.  Some are cute, some are silly, but they’re all real. And you’ll see that one sister is definitely the instigator of mayhem in picture settings.  Usually by lunging for her sis and saying “Ticky ticky ticky!” while wiggling her fingers.   Here’s the best one of that session… These are from a little photo shoot brought to you by Julie’s purchase of three coordinating sleepers for Braska, KiKi, and Jack .  And these are from Sunday morning, dressed for church in their beautiful fancy dresses. Finally, my favorite of all, so far.

They can look so sweet and innocent, right after making Mommy pull her hair out for the 10th time in the day. How is that possible? These are especially for Miss Karol. It just so happens that KiKi has a coordinating sleeper. So pictures just HAD to be taken...

Today was a good day, though it started very hectic and stressful, it ended pretty darn well.  Time is short right now, so I’ll summarize and let M elaborate for you one part of it. First, this morning, my friend Julie went above and beyond.  Not in grand measures, but in helping me with errands and surviving another one of my very frustrated times of hurried and over-busy stress.  She has a great way of making things work out, and the stress was calmed  in short order.  Oh, and Kinlee got fed en route to other errands…also a very key element to the story. Then the girls napped at the same time.  Nuff said! The big news today is that M’s group at work surprised him at the Christmas lunch with an overwhelming gift extravaganza.  When he showed up at home with it at 5pm, needing wonderful little elves to help him bring it in the house, I was caught off-guard and very moved.  After a moment or two looking at everything, I just sat speechless.  It is truly beyond anything I could hav

Sold.  One-car-family, schedule juggling, pick up-drop off, pick up-drop off, here we come.  But no more car payments—here we are! More soon on the down and dirty (sometimes painful) of our new financial planning philosophy, for those of you who have asked.  If you have particular questions, feel free to leave them here and I’ll address them each one. And once again, thanks to my parents for the Christmas in July gift of the minivan.  206,300 miles down, many more to go.

There are festive (to varying degrees) background blog layouts on the girls’ blogs and this one… if you like that kind of stuff, take a peek. I’ve got alot of things (elements, cute art) that haven’t been used yet, in this department, so if you want a quick one-of-a-kind background, let me know. Merry CHRISTmas!!!

If you grew up in church, especially protestant and midwestern, you probably know the song “There Shall Be Showers of Blessing.”  It was an upbeat, happy song, one I sang for all my years growing up, and I probably knew all 5 verses at one point in my life.  There shall be showers of blessing, Oh, that today they might fall… This was a favorite phrase of mine, in verse 4, I think.  I look at it now and I like that the whole song was asking, and even believing that showers of blessing would fall, but it wasn’t assuming that it would be today.  Yet in this section, we would all sing in agreement that it sure would be nice if it were today. Well, today we received showers of blessing.  I can’t come up with a better way to say it.  Though, the truth is that we’ve been receiving some good sprinkles the last couple weeks.  One day it was a card with some cash from a “Secret Santa” at M’s work.  Humbling . One day it was a couple of gift cards from the Secret Sisters at m

Michelle and Brian at The Zoromski Chronicles are in the process of adopting Lily, from Eastern Europe, who they found via Reece’s Rainbow .  Their little Ruby is one of my favorite little blog princesses, along with brother Braden and sister Karly, and I was so excited to see that the were taking this big step to bring another princess home to add to their family. They are hosting a blog auction at Lily’s blog , and there’s some good stuff there!  They’re going to even get the things to the winners by Christmas.  So go take a peek and see if there’s not something you could bid on and get a great deal and help a very cool family bring a precious girl home quickly! Grab This Button

I saw Bethany refer to a website called Wish Upon a Hero , so I thought I’d check it out.  In about 10 minutes I’ve already come across a couple wishes that I can “grant” with things I’ve been needing to get rid of anyway!  How perfect is that! Since we’re not giving gifts this year due to our budget limitations, this is a nice little substitute for me.  I love giving, and it’s especially nice to give to people I don’t know and won’t be gushing over how nice it was that I shared with them every time I see them….because I probably won’t see them.  That is NOT to say that it’s not nice to be thanked and such, but sometimes it’s easy for me to get a little high from getting that pat on the back.  And I don’t want giving to be about me, it’s about the gift, unconditional and given without strings.  And this site seems to be exactly all about that. It’s still weird to see the Christmas tree up with nothing under it (again, not that we miss receiving, but I miss wrapping the gifts to gi

Ooey, gooey, globby, and nonstop. That's the snot that's been present at our house for over a week now, first coming from Braska, then KiKi. I do not like snot. But I surprised myself the other day with how nonchalant I can be when handling the ickiness nowadays. Before becoming a parent, had I been put in this position, with two little girls leaving remnants of their goo on furniture and clothes and each other--well, I'd have politely, but quickly, abandoned ship. --News flash!!! It's snowing outside!!! I just glanced at the window!! (Well just a few flurries, but still!) Woo Hoo!!!-- Ahem, anyway, it's funny now how I can catch it, wipe it, clean it, and repeat about 300 times a day. And when leaving the house, it's not so much, "Darn! I have snot on my shirt!" as it is "Gosh, is that too much snot on my shirt to be acceptable for this outing?" Can anyone relate? And it's like a celebration when a big sneeze produces alot of stuf

So much to write about. No time to write. Braska’s 3. Alot of thoughts. Three years flew, but yet it didn’t. If you ask her, she’ll tell you it was a “happy burfday” and she’s “phree!” The IEP. Came, went, and I’m glad. It was a big process. I probably made it bigger, but I’m pleased with how it all went, and I’m not convinced it would have gone so well had I not made it a big deal. But I’d like to document for me and for those of you who will be crossing that threshold soon. So much learned. Finances. No one likes to talk about or probably hear about them, but we all live it. We’ve just this month implemented a very strict budget (like in a spreadsheet, no room for cheating), changed several things, and I’m still struggling to adjust. I thought it would come easier to me, but it didn’t. I’m blessed with a few little elves around who help me get through when I need a QT cappuccino fix for $1.28, because all such frivolities got left on the cutting room floor. And it’s almost tim

I can be grouchy and I can whine with the best of them, but I have much to be thankful for and I make a point to spend time thanking God EVERY morning and EVERY evening for the things in my life, not all good things, but things that bless or teach me in some way. This morning, though, I’m amazed at his provisions for another family and for a little girl. Many of you have undoubtedly heard of Darya and the mission of 11-year-old Lydia on her behalf. A little girl determined to rescue her new little sister and bring her home. Her mom agreed to adopt Darya if Lydia could raise $20,000 in 8 days, by today! And she DID IT! Far over $20,000 in fact!!! Go read the story and announcement of success . Really, do NOT miss this chance at seeing truly what giving is all about. I read it to M this morning and got all choked up. First because little Darya is in a place where she is not even held or spoken to. How wrong is that?!? But mostly that she will be coming home. She has a family who

I enjoy digital scrapbooking alot.  That’s how I do the backgrounds, headers, and fun picture alterations, etc.  But it’s even better when I get to do what I enjoy and it benefits someone else. I’ve mentioned sweet Laynee a few times, and I hope you’ve all been to her blog to see and read about her.  Her smile is more than worth your time, and her mother has a beautiful way of painting pictures that allow you to see her daughter as if she were right next to you.  This week, I worked with Karol, Laynee’s mom, to come up with a little makeover for her blog to represent Laynee in a special way.  I’m working on a few more now, that highlight different things about her, but she chose this direction first, and I so loved working with it.  It’s humbling to do something so fun on my end that will bring a smile, though possibly including tears as well, to a dear friend that I’ve never met.  Karol, I’m truly honored.  I wish there were a better word, but that’s all I can come up with.  Hono

It went from bad… To worse… at least for KiKi. It’s too bad, because they looked so cute in their little matching outfits.  It could have been a quality shoot.  But something upset Kinlee and she was not to be consoled. This was also the night I tried my hand at making hair bows.  The girls have bunches, but it seems they never have just what I want at the time, and since Braska often needs two, we’re sometimes limited in our choices.  So I bought some things a while back to try it out, make some simple things, but I never got to it.  Then this week as we were getting dressed for an event in the evening, I had nothing for Braska that was just right for her outfit.  So—with 30 minutes til we left the house—I pulled out the bag from Hobby Lobby and grabbed the lavender spool.  I found the hot glue gun in the basement storage and get it heating.  With a quick flip and flop, twist and turn, a bow was assembled, and I stitched it quickly to hold it in place.  Glued t

BUT if you just feel like something shallow and ridiculous for a moment of silliness in your Monday... click here . Ah, the good old days... I could have been so "popular!"

That beautiful little face has found a home in my mind in a way that few have.  Little precious Laynee. Jalayne Grace. A couple months ago, I posted about an accident that I’d read about that day on one of the DS forums.  I didn’t have much info at the time, but I was struck by the story in a way that surprised me a bit.  I remembered the precious face, and it hurt to even think about such a situation happening to this family.    I never had the chance to know her personally or see her giggle or watch her play with her siblings and cousins, yet I miss her in an almost palpable way. Recently her mother has started a blog to share their story, to talk about her sweet daughter, and to understandably grieve this new emptiness where such a joyful little girl once lived.  I’m riveted by this blog. The honesty with which Karol shares, the pictures of little Laynee—it is not hard to spend time there.  There is obviously sadness and remembering, but there is always a tone of hope.

For our anniversary (today), we went to a comedy club on Saturday where a favorite of ours was performing. John Heffron.  He won Last Comic Standing, season 2, and his stuff is just funny.  It was a tad less PG, but still really fun! Thanks, babe!

Spent the night at the ER with M writhing in pain. I’m exhausted or I’d tell you the whole story.  The short version is that he’s now feeling better thanks to pain meds, he has kidney stones, (One is 5mm!! Several more behind it too.) and the pain will probably return as this all continues on.  Yay. Overall it wasn’t a bad trip.  I mean, for me.  I read a book and relaxed.  He hard time til the meds kicked in, but then all was ok.  CT scan and all, we were there a little less than 3 hours.  So I missed a Girls Night Out event…no biggie.  There will always be next month. Let me mention, woefully inadequately, that my friend Julie ( Jack ’s mom) has just gone above and beyond lately.  She kept the girls this morning while I had Braska’s first of two IEP meetings, shared her yummy sandwiches for lunch, and we dropped them off in a hurried fashion tonight as we went to the ER.  And that’s all in one day!  She has fished me out of more than a few binds in the past few months, and I real

Can you share some links to blogs you know of with babies with DS 6 months and younger?? Anyone? And anyone know of DS bloggers in Louisiana, especially southern La? Spread the inquiry around a little and see if you can assist me with this one. Thanks!!

A student working on a project on Down syndrome in college posed a question yesterday on one of the forums I frequent. What would you suggest for someone else who is going to have a baby? Would you suggest that they get the amniocentesis or any blood work directed towards finding any potential problems or was it just easier not to know? And this was my response…  I know this is a controversial topic, but I wanted to share my perspective. This is quite a loaded question, in most circles, but I'll answer as honestly as I can.  I didn't know prenatally and I'm very glad that I didn't.  For me, that is because my marriage was in a very fragile place, and if we'd have known this, I'm sure it would have been over before she even arrived.  I would not abort a baby for any reason, so when I was offered an amnio, there was no reason to do it and take any risk related to it.  Even though we struggled with the first couple weeks of adjusting to all the new

Can I make a request of all you bloggers out there?  I’m trying to do a little personal research, and here’s what I’d love your help with… Take a little video of you chatting with your child, toddler to teen or beyond.  This goes for all kids, but especially kids with DS.  Just regular stuff, like how their day was, what’s for dinner, tell about their favorite TV show, what do they like about the siblings… anything.  Just get them talking.  If you have younger kids, just starting to talk, even mimic words would be helpful.  Even if it’s only understandable to you at this point!  Then post them and let me know that you’ve done so.  Please?  Thanks so much!!

It’s been a very quiet week here.  The girls have been at my parent’s house since Sunday, and I’ve spent 98% of the week lying in bed and/or sleeping, trying to rest this illness away on strict orders of my husband.  I got more than bored a few times, but I tried to comply. Today I went back to the doctor, and he confirmed my suspicion that my illness (yep, that fun h1n1) of last week morphed into a sinus infection and that’s what’s hanging on and causing me trouble these last several days, in addition to the residual cough from the flu.   Antibiotics were started and--placebo effect or not--I’m feeling better this evening.  Unfortunately, it’s way past my bedtime but I’m suddenly unable to sleep, so I’m blogging a tad before returning to bed to try again.  Probably all that snoozing this week… rest overload. (huh?) My birthday came and went, and as they tend to do by this stage, I suppose, it made not much difference in the days around it.  My sister did bring by some beautiful

In all my time resting the last couple days, I did get a chance to do a new fall background for my blog. For those of you interested in that kind of thing, come check it out. I'm happy to share, change the header to your blog name if you'd like to use it as well. Just drop me a line... Happy Fall, Y'all!

So far this whole post-about-DS-thing is not quite working out.  Partly because I haven’t felt well for going on 11 days now, and partly because I just haven’t been able to formulate well what I want to say.  Oh well, I can keep trying. If it’s November before I get it together, so be it.  The girls are at my mom’s this week, after I have just not been able to kick this remaining little pesky part of the sickness, or a different sickness, who really knows…  I’m down to a nagging cough and sore throat, but I’m still having trouble with energy as well.  The thought was that the girls would go visit Grammy so I could get a couple days of uninterrupted rest and really kick this thing. I keep thinking that everyday will be the last day. That FINALLY tomorrow will be my day of feeling good again… but not yet.  Hopefully tomorrow is the day… If you have magical tips of great ideas, do share.

I came across this recently, and thought it was interesting… DownSyndromeFootprint.org Check it out and share your thoughts. I’m curious.

From an email I got today… --------------------------- Let me get this straight... We're going to pass a health care plan written by a committee looking for compromises, passed by a Congress that exempts themselves from it , signed by a president who smokes, with funding administered by a treasury chief who didn't pay his taxes, overseen by a surgeon general who is obese, and financed by a country that's deeply in debt. What could possibly go wrong? ----------------------

In 59 minutes, as tradition holds, even though the official entry time isn’t til later in the day, I’ll no longer be the nice, round, trendy age of 35.  I don’t know why it’s trendy, but TV characters aren’t ever 36, they’re always 35. But I digress… I’m a romantic at heart, always believing that my fairytale will begin, glitter and all.  I always wish for some big magical event, some wonderful sunshiney day full of good things, smiley people, and lovely flowers lining every step I take.  Well, not really.  But something like that, maybe.  When, in actuality, birthdays aren’t a big deal around here, and that’s ok.  I hope someday we’re financially sound enough to do fun, lavish kinds of things just because it’s a birthday, but for now, we say “Happy Birthday” to the celebrating individual about 50 times throughout the day, and that suffices.  In all fairness, we are doing something really fun next weekend that is supposed to be representing my birthday present, and I’m looking forw

I did a new background for Braska’s blog last night, with her help, of course.  She is getting better about choosing between two options, so she likes to help.  And she must have liked what she chose because while I was working, as the elements were coming together on the layout, she said, “Oooh, pretty!”  It’s so fun to listen to her just come up with things like that. Anyway, if anyone is interested, I would be glad to share the background (with your own little one’s pic instead of Braska’s of course) if you want to use it for this month or whatever.  The header is separate and can say anything or nothing at all.  Just puttin’ it out there in case… And the “Down syndrome is… Beauty” image over there will be making it’s debut on a couple items, shirts etc, soon… if you’re interested in that.  I’ll put it in here too.

I apparently jumped the gun yesterday when I thought I was doing some better.  Last night the sore, swollen throat was back, and I had a very achy (head and body) night.  This morning, I felt like I was starting all over again….I’m so sick and tired of being sick and tired. M stayed home again, still not 100%, and it was clear I wasn’t going to be able to take care of the girls, so he took a shift while I went back to bed.  I slept a couple of hours, but I’m still very uncomfortable.  Let’s hope the girls take naps at the same time, so I can sneak in more rest. As far as Braska and Kinlee and illnesses… they seem to be really tough and well-protected naturally.  I’m sure they are more nutritionally sound than either of their parents.  With Braska on Pediasure for all her nutrition, she gets a perfect balance of all her required elements, and it seems to help keep her very healthy.  Even though “they” say that kids with DS tend to be sick more often with things like sinus infections

Man, this kicks over and over again, let me tell you. I thought I was feeling much better yesterday afternoon, then had another rough night, though not AS bad as Sunday. Today I've been up and down. Went to Bible Study this morning, because I really enjoy it, but was wiped out when I got home. This afternoon I've felt very dizzy again, as I did during the night, and just plain worn out. Hope this gets out of here soon. M's still in pretty bad shape too. On the DS awareness note, since that's the whole idea of the 31 for 21... I'm going to try to get more Walk in the Park pics up on Braska's page today. In case you're interested... Wishing you all a healthy day...

Late last night I started in with really strong shaking chills and they continued for about 4 hours through the night.  Along with the sore throat the day before, the headache, body soreness and aches, and a bit of nausea too… this was not a fun night.  About 4 am, M started in on the same path.  This is no normal 24-hour flu…at least it’s more miserable than any I’ve had. Ever.  It came on SO fast and SO hard.  Really horrible. We went to the doctor this morning, which is saying alot…we’re not good patients and we rarely go, even when we should.  But we just couldn’t take a chance with the girls around.  Calls were made this morning and arrangements began to get the girls out of here asap.  It was handy that my youngest sister Julia was here overnight since my mom had watched the girls on Sunday for us and was returning on Monday for another reason.  Julia decided just to stay with us instead of making the trips home and back again.  She was able to watch the girls so we could go to

Yeah, that’s what it seemed like.  There were more purple jerseys and hats and Viking costumes than any combination of blue and gold and white.  It was sad for the Rams. I can’t imagine how it would be to look around your home stadium and see more fans of the opponent than your own. Ouch.  I kept watching the cheerleaders and wondering how they could keep being all perky and bouncy when there wasn’t a soul in the place paying attention to them.  Or cheering at all. BUT… The afternoon was so fun!  I had a great time taking it all in, goofing off, watching the Viking fans…all.around.us.  I thought it was really fun!  Can I say fun again?  It was a very fun way to spend a Bears-free afternoon during football season.  M and I dreamt of the days when we will be so wonderfully financially stable that we can go see the Bears anytime, wherever they play, with great 50-yard-line tickets.  Know this, though… we kept our Bears fanship on the down low with all those Vikings around us. Yes,

We are headed to the Edward Jones Dome today to watch the StL Rams and the Minnesota Vikings. Our very wonderful friend Cindy gave us tickets and we picked this particular game so we could see Brett Favre in person slinging that pigskin around! (And it was nice that this is the Bears bye week anyway, so we're not missing their game...that would be unacceptable, you know.) My sister and her husband, Rachel and Patrick, are coming along (though they're not Rams fans either...Go Patriots! For you, P!) and we're excited about some good seats and seeing some good football. At least on one side of the ball. Unfortunately, the Rams will likely lose miserably, but we'll cheer them today because Minnesota will go up over the Bears 2 games if (when) they win today. So that's the plan. On the off chance something crazy happened, I just wanted to this be out there to mark my predictions. Bob's your uncle.

Good news everyone!! The computer is back up and I'm so glad! Rachel Coleman's birthday is today, and I know most of today is over, but if you hurry yourself over to the Signing Time Store , you can get some seriously good deals...35% off! Check out Braska's blog for more info and a video from Rachel herself. I just snagged some flashcards and a couple board books. Good stuff!

I'm out of commission...just when I need to be posting like crazy. Computer issues, power cord, actually. So be patient, and read some of the other blogs for a while. Thanks to my dearest husband for sacrificing 4 minutes of precious computer time to allow me to share this info. And let me tell you, it doesn't come without a high price...interrupting his computer time. He only gets like, gosh, 18 hours of it a day. It's tough.

Names are a funny thing.  I mean, in a way, names are as common as anything can be.  Everyone has one, sometimes two or three, and there are alot of them that are used quite frequently.  Some are unique, but it seems like that takes alot of work these days…people are getting more and more creative with names. In our family, names are a big deal.  My husband’s name, though I generally refer to him as M in writing and sometimes in person, is Muncher. Yes, that’s his name. He’ll be happy to show you his driver’s license if you don’t believe him.  I have two daughters, Nebraska Larae and Kinlee Carene.  Not the most common names ever, we’re aware.  Usually they are known as Braska and KiKi.  In blog land, I’m known as RK, and many people in my face-to-face life call me that as well.  My name is Randa (pronounced ran-duh, not ron-duh) Kay, usually used with a hyphen—Randa-Kay—because I’m not a fan of Randa by itself. (Long story, not one that the blog will be carrying.)  I have a sister I

Today was the annual Walk in the Park for the DSAGSL . We had a great team for what little effort we put into it. (We’ll do better next time! It was kind of thrown together on our part.)  Most of the family was there with us, and we really appreciate them coming out on a windy, chilly day! We’ve got a bunch more pics, so that’ll come soon.  Our buddies from C-U also came down for it, so check out Jen’s post at ReJenerationS to see pics from their perspective.

Ok, people…football fans far and wide.  It’s time to cheer your team!  So many of us are loving this time of year with football season in full force! (Go Bears!!!) My friend Missy has come up with a GREAT idea, and you’ll hear more about that soon.  But in the meantime, I need to see pics of your cuties in their NFL wear. Obviously, Bears-wear is the best, but we’ll accept anything. Ha!  We’re going to put this together and see if we can get some sports-related awareness going! Email pics of your little ones with DS (with their siblings if you like!) in their football cheering stuff to braskasmom at gmail dot com.  And stay tuned to see what fun stuff comes.  And PASS THE WORD!!!    Post on your blog for others to follow… it’s all about DS awareness, and it doesn’t hurt to get to cheer on your favorite team in the meantime! (And if you have football-fan friends who don’t have blogs, let them know too!) If you’re more of an NCAA fan, then send those on too. Maybe we can REALLY get

I can’t even tell you how unprepared I am for October and fall and my birthday and Halloween (which means great holidays follow) and cooler temperatures, etc.  But one great thing about this month is Tricia’s brainchild , 31 for 21. (Let me just admit, I always call it 31 for T21 even though that’s not it’s name.  If I goof, I’m sorry…just letting you know now.) (Here’s a list of other bloggers participating, if you need some good reading material!) If you’ve been around for this before, you know the drill… it’s in honor of October being Down syndrome awareness month.  We bloggers far and wide opt to commit (with fingers crossed) to blog each day in October (31 days) for DS (Trisomy 21), though not all posts have to be all about DS, of course.  It’s awareness, people…getting the word out there that this is not some kind of horrible, sad, cheerless life we lead when DS enters the picture.  Not sure yet which direction I’ll go with this line of posts this month, but I’ve got

E-mealz . I just heard about this today from a friend of a friend, so I've been sharing it with a few people who I thought would find it especially helpful. But I thought I'd just throw it out there. It looks like it could be a pretty great tool to lessen mealtime stress and spending! In summary, it's a website that will give you a meal plan (with recipes) each week along with a grocery list for that meal plan based on the store you choose (there are a few specifically and then generic ones too) and using the sales for that particular time! How cool is that?!? And they have an Aldi list, too, which averages around $30 a week to feed two people. $30!! (They have family plans too.) It costs $5 a month to subscribe, but it's pretty clear to see that it pays for itself pretty quickly. They also have specialty plans, for particular diets and such, like one that gives the Weight Watchers points for the meals. All in all, it sounds like something very interesting, and I&

I saw this on one of the DS forums. I'd love to meet this girl for tea and have a chat.

Beverly Beckham writes for the Boston Globe and has many wonderful articles in her archives.  Sunday, she had another winner, called Seen Through Loving Eyes .   What do you think? Have you had similar experience? Share your thoughts in the comments. _______________________________ My granddaughter Lucy is six years old and is part of a class of people that is quietly being eliminated in my country. She has Down syndrome, a genetic condition that frightens so many women that 92 percent of those who learn they are carrying babies with it choose to abort. Dr. Brian Skotko, a genetics fellow at Children’s Hospital, fears this number will rise. Prenatal tests are invasive, carry a risk to the fetus, and are given in the second trimester, so many women choose not to have them. But a simple new and non-invasive blood test, to be given early in a woman’s pregnancy, is coming, perhaps as early as next year. “As new tests become available, will babies with Down syndrome slowly disappear

Just got back from the dr's office with KiKi. She has blisters on the back of her throat. Well, whatta ya know?! Something IS wrong! I'm relieved in a way, because this whole deal of the unknown is the most challenging to me. Dr. A also gave me a script for lactulose to help with her constipation too. Braska had this issue and did well on this med, so I'm glad she agreed to try it for Kinlee. Hopefully, if we can get those two things fixed (just pain support for the blisters) then maybe Happy KiKi will return. I keep meaning to do a full post on this, but I'll just state it for now: "Everyone" seems to think kids with DS are hard work, but Kinlee is WAY more difficult and more exhausting and more frustrating than Braska has ever been in her almost 3 years. That doesn't mean we don't love her and enjoy her differences, of course, and there are rewards, but for the record, normies are no cake walk either in my book! (Just to clarify our "nor

Jeffrey Pomranka, the COO of the DSAGSL , wrote a letter to the editor of the Post-Dispatch that was recently published.  It was related to t he popular story from last month when a fan fell over the wall at a baseball game and was assisted by Albert Pujols.  The fan had a son with DS.  Jeff’s letter is well worth the read.  Click here for the letter and Jeff’s explanation.

It's possible that I am not meant to parent a "normie," as we call them affectionately in our house. A typical kid. One with 46 chromosomes. The regular kind. However you say it, and no matter how cute she can be at times, Kinlee is pushing my buttons in ways that drive me to the edge so quickly. Something is up with her lately, and I'm so fed up with trying to figure out what it is. For the last week or so, she's been getting up again at night. Two--sometimes three--times in a night. Waking and screaming. I give her a bottle, she takes about 3 oz and restlessly goes back to sleep. In about 3 hours she does it again. She won't eat like she was doing before, bottles or baby food. She fusses all the time. It's a whiny, grunt/growl, complaining thing that wears on my nerves like I didn't think was possible. She won't sit still for the world. She must climb on me, stand in my lap, turn around, sit down, and do it again. All the while whining and being

Ok, all you moms with littles... I've never had a kid that eats before, so give me some help. What do you feed a 7-month-old? What's the progression from cereal to baby food to _____ look like? How does the balance go between milk/formula and "other"? And don't give me the "oh, you'll know...she'll tell you." I don't work that way... need some specifics here!

Today on one of my DS forums, a very small forum, one of the mothers posted that her precious little girl--only 2 months younger than Braska--"went to be with Jesus" on Monday after a "terrible accident." I Googled the little girl's name and found an article describing the situation. (I won't link for privacy purposes. They are not bloggers.) Little J was outside with her family while they were washing cars in the driveway. They noticed she was not right there with them, and they soon found her in their pool in the backyard, but it was too late. It makes me physically sick. I can't even begin to imagine the pain and horrible darkness that this family is dealing with. The mom mentioned that the oldest daughter, a teen, is struggling with being there when they found the toddler and blaming herself. I often fear accidents, I think about them more than I should. I pray for protection, for my own instinct and wisdom to keep them safe. But life on this

As a follow up to yesterday's post, I got word today that we will NOT be assigned to the new guy, but we will have an experienced coordinator after all. I feel SO much better. I also learned some other info today that made me think I still have some kinks to work out, so I'll be taking care of that this next week. I'll be SO glad when this transition/IEP stuff is behind us. I want to do the very best I can, but there's part of me who wants to just hide and let it all happen without me.

I have mentioned before that our service coordinator with EI is the best.  And she is.  Or she was.  Today was her last day with First Steps, and I’m not anywhere near happy about it.  Sure, I wish her well, she’ll be a great asset at her new place and she’ll do a wonderful job.  The kids will be blessed to have her.  But we’re less than 3 months from transition from EI to school.  It’s a BIG transition.  I’ve done my homework and I’m continuing to learn, but I was SO counting on her to make sure we got through it safely.  The timing is just so plain sad. And, though I’m trying to be open-minded, our new coordinator is new to the First Steps system, and that is enough to make me not feel confident.  He’s probably very nice, he’s probably really smart, and he’s probably good with kids, but will he be full of experience and knowledge when I need it most?  We’ll see… I’ll hope so. I’ve just come to find out today that some that were in her caseload are going to a much more experienced

M asked me to guest blog a recent adventure with medical procedures for the purpose of keeping further “surprise” babies from showing up.  I wish I had video of the whole experience. As his mom put it, it was “comedy gold.” If you’re interested in the “Snip/Tuck” story, click here .

Can someone describe the physical experience of having a CVS? Not the procedure itself, but how it felt first hand...did it hurt, what was your down time following, etc. There's a mom on a forum who is wanting to know and not many of us there have had one. Thanks!!

Check out this press release about the new clinic for ADULTS with Down syndrome soon to be opened at St. Luke’s Hospital in Chesterfield (St. Louis metro area).  I’ve known about this project for a while since my sister works for St. Luke’s (I call her my favorite big wig…I’m so proud!) but it’s new news that Albert Pujols has signed on in cooperation with this new clinic.  That is exciting! Many of you may know that Albert has a daughter with DS, and he has a foundation here in the St. Louis area, the Pujols Family Foundation , that does alot of things for people with DS and their families. They are very popular among the DS community in these parts! How exciting is it to have an ADULT clinic designated for people with DS?!?  So many of us cherish our DS Centers for our kids, and it’s great to see a need noticed to focus on their health after they’ve “aged out” of the pediatric practice system.  Yay St. Luke’s!  Yay Albert!  Go Cards!

If you don't have Narrow Ridge in your reader, you should. Tom has a great perspective on many things, especially being a dad to Silvi and Ian, his little one with DS. He's working on a documentary about his son, and today he posted a piece that "got" him last night. If you've been through the surgery of your tiny one, you will relate, and it will bring back many a memory, though it's beautifully simple in it's presentation. It brought back a surprising amount of emotion for me, as I remembered sitting and rocking Braska just before we walked her down the hall to hand her over to the nurse at the door to the OR for her open-heart surgery. She was 3 months old. Sometimes, I still can't believe it.

In the previous post, I talked of when I went to college, 18 years ago this past week.  That first weekend, during orientation events, I met Melanie.  We can’t seem to remember exactly when it was or how it was that we met, but she and her roommate, A, became my best buddies right away.  Mel and I had MANY an adventure, some side-splitting hysterical, and some not as much fun, but all of them were priceless in their own way. That first weekend we coined a phrase for which we now just use OTW.  I won’t go into a whole explanation, but suffice it to say it was all about boys.  Anyone surprised?  I was 17…what else was there?  Several years ago,  Mel, A, and I went on a trip together, then another a year later, then another.  We called them OTW trips, and they were so much fun. In between then and now, we’ve lived a few hours apart, but now we’re only 10 minutes from each other, so we’re enjoying getting to hang out more.  I’m loving being back on old stomping grounds and that Mel is