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Showing posts from October, 2010

31 for 21: The bigger bugs

The girls are way more what you want to see….trust me.  Click over here to see the rest of our day. And Happy Birthday to the best mother-in-law I’ve got! (I kid!!!  She’s good.  I’ll keep her.  And she knows I love her even when I tease.) And congrats to all of you who hung in for 31 for 21 for the whole month!!  Continue the awareness, people!

31 for 21: A bit more about feeding Braska

There are a couple more things I wanted to touch on, and I thought that Cate’s question regarding this post was an excellent place to start… I totally hear you on patience. It's hard to go at someone else's pace. Do you have something to do while she's eating? I read your post thinking that it would be good knitting time. That's my choice for something that makes me feel like I'm not just waiting, but I'm still engaged and paying attention. (Thanks for the input and the question, Cate!) One of the most difficult parts for me right now IS the waiting, but it’s a different waiting. Braska can feed herself with a spoon, but it’s very slow and she will only do one or two (rarely) bites at a time. And remember, we’re talking purees here… yogurt, mashed potatoes, blended meals…things that fall off the little spoon easily. So there is a lot of guiding, assisting with proper hand position so she doesn’t drop the spoon, helping her get the spoon back IN the little bo

31 for 21: Kinlee-isms #1

Kinlee is a talker. If you’ve spent much time around her at all, you’ve gathered this. At 20 months, she is continually surprising us with her conceptual understanding and use of her language. I don’t want to forget where she is at each stage, so I thought I’d jot some down for documentation purposes. These are things she has said in the last couple of days… no words added. No word tense changed. Phonetics used when she has her own little pronunciation. I want to eat cereal. Mommy’s eating turkey. My foot hurts on temp-a-chure. (She had stuck the digital thermometer down her pajama leg, and she was stepping on it.) My daddy go to work. Braska’s diaper 4. KiKi’s diaper 3. (Diaper sizes, with the number on the front.) I running around, Mommy. Purple octopus in da book. I ready get in the bed. Bunny, blanket, bink, please. Mommy cook some noodles please. My yogurt suh-tack-uh-ler! Thank you Mommy! (Spectacular is a fave lately. Thanks to Sesame Street’s Word on the Street . Go to park wi

31 for 21: Education without alienation

I have had the privilege of getting to know some super nifty blogger buddies “in real life” (IRL if you’re a fan of the acronyms, which I am) versus just communicating through blogs and comments shared.  I could list a whole bunch of them, but for today’s purposes, I’ll highlight one of my faves. Most of you are very familiar with Courtney, Justin, LC, and Jace and their ever-entertaining stories written in the dry, witty style that Courtney employs with ease. (And for what it’s worth, it’s not a show for the blog. That’s how she talks. It’s great.) I’ve been blessed to be able to get to know them better since they come over here to St. Louis Children’s for a chunk of specialists for the squibs.  We’ve done dinners out, visits at our house, and I’ve been able to provide some tiny distraction from the fun of hospital stays when they’ve been here for a few days at a time.  Trust me, I am always the one who walks away more excited and blessed by the interaction.  I’m still a tad st

31 for 21: 2 meals 1 day. Very good.

Braska took two of her meals today orally.  What’s up? You’re just sitting there looking at the screen like nothing’s happening here.  Let’s try this again… Ahem. Braska took two of her meals today orally!  Do you get that?? She consumed, by spoon and via her mouth, enough food to count for a meal. Twice. In one day. This is HUGE! Has she done it before? Yes. Can she do it regularly? Probably. If Mommy will get in gear and do it right. Is this a normal occurrence? Nope. Not at all. Braska CAN eat enough calories to be “a meal” if given the right combination of circumstances.  The elements are not often aligned to make that happen. Liquids are another story, but she did take almost an ounce over about 25 minutes of feeding time and 12 to 15 sips. The news is big. But it’s really largely because Mommy set aside   made the time to do it.  That’s big. I rely on the tube because it’s no hassle, no mess, super fast, and it gets the job done.  Those are all things

31 for 21: Better vision

Just a quick one… Braska’s not crossing as much with her new lenses. I’m hoping she’s adjusting. She hasn’t been taking them off, either, but she is still not sitting back from her shows as much as she used to. Maybe it’s just habit at this point. We’ll be doing some unscientific testing. But the eye center never called back. That doesn’t make me pleased. I’ll be calling them tomorrow to follow up. I’m pleased she’s doing better, but they don’t know that. And they still need to respond to calls. Simple courtesy. This isn’t like them, so I’ll check in again.

31 for 21: Trying to focus

Braska’s got glasses. We’re all aware of this, I think. On 10/11, we went in for a visit and got a new prescription.  I was hopeful that this would help her out, since Dr. S said that it was a pretty significant change. We ordered the new lenses to be put into her most recent frames, and they were ready for us this past Thursday.  We picked them up, and she promptly began taking them off. Braska doesn’t generally take her glasses off unless she bumps them and can’t get them back in a comfy position or if they are really dirty and smeared.  She’s been great since day one in leaving them on.  But not this time.  It was like she couldn’t see and kept taking them off to remedy the problem.  When she is not wearing her glasses, her eyes turn inward quite significantly, though just one at a time.  One of her issues is that her eyes don’t seem to work together as well as they should…partially due to muscular weakness.  We’re used to seeing the crossing when her glasses aren’t on, but

31 for 21: Cooking for the crowd

If you’ve been around long, you know that after church on Sundays, we drive down to the in-laws’ place to watch Bears football during the NFL season.  It’s a family event, with most of the family there each week.  We take turns doing lunch for everyone, and this week it was my turn again. I don’t mind doing it, especially since for the next few weeks afterward, I don’t have to worry about Sunday meals.  Today we had tacos. Always a hit with M, and since he’s the pickiest one in the bunch, it works well for everyone else, too.  I enjoyed my big taco salad.  Now if only I could learn to stay away from the cute orange and blue candies that are out and available… Don’t miss Braska’s super adorable football day picture on her blog … and I thought that kid would not be able to join in family events.  Wow. I have sure been wrong A LOT when it comes to what I thought those first few weeks…  Go Braska!

31 for 21: Speaking for awareness

Thursday I had the privilege of speaking for the O’Fallon Kiwanis Club at their lunch meeting.  I was asked to speak to them about what our county’s community group ( StC ) of our metro DS association ( DSAGSL ) does, as well as sharing our family story. It was great timing with DS Awareness Month upon us, of course. I was honored to be asked, even though the president of the club—who did the inviting—happens to be a certain female sibling of mine.  And it doesn’t hurt that I have a brother in the club as well.  This kind of nepotism can be a good thing. So I prepared a speech, made up a collage ( above ) VERY quickly in the middle of the night before (because apparently I didn’t plan to do a handout until the last minute), and after beefing up my confidence with an amazing Bible study lesson Thursday morning, Braska and I headed to the restaurant.  ' Yes, I took my own personal visual aid. I had also asked the interim executive director of the DSAGSL to come, to gi

Comments: #1

I’ve thought for a long time that there is alot of good in the comments we leave on each other’s blogs. And sometimes I have bits of something that I leave on someone’s blog and I think that I should share it with others, because it’s likely to apply to more than one person.  So I’m going to be starting a series that shares my comments.  Maybe that’s thinking too much of my own thoughts or cheating as far as blog content goes, but I think it might be interesting.  Feel free to join me in sharing your comments on your own blogs… I know many of you have left notes for me that held a lot of wisdom! Here we go….. Responding to this post , regarding my good friend Jen’s dream that she was offering up for analysis… Well, dear, you know me well enough to not be surprised at this...and I'm no dream analyzer pro or anything... but if nothing else,  I'd go with the one question.  Are you ready?  If not, get that way. :o)  Then you're good to go whenever and wherever. Be re

31 for 21: IEP 2010, Part 1

Today was IEP day.  (Individualized Education Plan—All students involved in special education have one of these.)  We moved Braska’s up a little earlier than her birthday in late November because I like it a little closer to the beginning of the school year.  It just makes more sense to me to be done with the new team soon after school starts.  So this year we’re in late October, next year maybe we’ll hit late September.  That’s probably a good time… about 6 weeks into the school year. Anyway, after a busy day yesterday, which I’ll have to tell you about another day, I tackled the important parts of IEP prep last night. The baking. Yes, that’s a very high priority on my list of IEP must-haves.  In my opinion, no parent should EVER go to an IEP meeting empty-handed.  Taking goodies, be it  pastries,  muffins, or coffee cake for a morning meeting or M&M’s, cookies, or popcorn for an afternoon meeting, it’s a huge tool in making the meeting less intimidating for all involved.  I

31 for 21: Anyone like Chevy’s?

If you’re anywhere near St. Charles, Missouri… OR if you’re willing to COME to St. Charles, there’s a great reason to eat at Chevy’s this coming Saturday, October 23.    There will be a fundraiser for Dashlyn’s adoption fund at Chevy’s on Saturday, October 23, ALL DAY!  What do you need to do?  Just come and eat at Chevy’s !  That’s it! They will donate 20% of your bill to Dashlyn’s fund.  YAY! This is valid at the St. Charles location on Veteran’s Memorial Parkway, near Zumbehl and I-70. (And you need a little mini-flyer thing to give them for verification… click here to be able to print one . Don’t forget to take it with you!)  If you have any trouble, drop me an email and I’ll send the document to you.  It can take a few seconds to open the file from the link. Julie and Allan have been given their SDA appointment in Dashlyn’s country, and they’ll be leaving to go meet their girl on 10/30.  So soon!  Woo hoo!!!!  Dashlyn will be home soon, so come on out and pre-celeb

31 for 21: Beautiful Baby Braska Part 2

Here’s a few more of the finds from years ago… Spring 2008. Pretty little bear… this one is interesting because she so rarely does the slack jaw thing. Especially at this stage of her life she was 100% opposed to things in her mouth, so she generally kept it clamped shut! These were taken the same time… I posted the one below here with some thoughts that really are cool to look back on. Now the little girl I thought would be so neat is here, and she IS pretty great. And the famous announcement shirt… the way her daddy found out about little sister… this was June 2008. She was 18 months old. Just scrumptious!

My Birthday 'Observed'

I was picked up and swept away by my friend tonight. So I am enjoying Macaroni Grill with two lovely friends and loving the corvina. YUM!!

31 for 21: Birthday roses

My flowers are opening up, and I do love neat pictures of flowers.  Handy, huh?

31 for 21: Beautiful Baby Braska Part 1

Yesterday I was looking for some pictures on my mother-in-law ’s computer, and as I was perusing her uniquely organized files, I came across some great ones. These are all pics that probably were posted long ago on Braska’s blog , but they’re definitely all worth bringing to the front again.  I smiled at each and marveled at what a pretty little one she was.  That she IS, of course. But her little round baby face was just too cute… So enjoy this little walk down memory lane. From the summer 2007, one of my all time faves. Hanging by the pool with Grandma C. Also from summer 2007, with Uncle Levi. Notice the marks on the side of her face.  That was one of our worst experiences with NG tape… she still has a scar from that one.  (I wish we’d have ditched that NG a long time before we did!) From Christmas Day 2007. Just so cuddly, isn’t she?  This was the DAY AFTER she got her glasses, and she was LOVING life.  She came alive in a whole new way. (Don’t miss t

31 for 21: Hope for the best yet

We’re hanging at the in-laws’ place, as usual, watching the Bears beat the Seahawks. (Wishful thinking…they’re currently behind by 10.) I’ve received some pretty cool birthday cards, some homemade, all very thoughtful. One even had a panda mermaid hand-drawn by Shay. Did YOU get a panda mermaid on YOUR birthday card? I didn’t think so! I received a generous gift card that I promised I’d spend on myself…the inability to generally do so is apparently a flaw of mine. And one-of-these-days-sister-in-law Cheryl made me a lovely carrot cake with some scrumptious frosting! I’ve been back on the super strict diet for a few days, with success, but it’s my birthday, for heaven’s sake, so I had cake! (See what the cake says? Happy Birthday RK . And some of you think I'm just being coy online by using initials... ) Here’s to another year, hopefully my best yet!

31 for 21: It’s not my birthday

Not for another 6 1/2 hours, that is. But today has felt like a birthday in a few ways. We went down to Clayton for a grand opening of a new universal design/adaptive playground. The girls had a blast, we got some yummy and healthy lunch as a perk, and it is a Beeeeea-UUtiful day outside. Plus M got to schmooze with a few co-workers in a non-work environment. Always a good thing to show off your cute kids, I say. Thanks, M, it was a very nice outing! This afternoon the girls and I did some shopping at Costco, and they were so good. Both in the cart without melting down. And with Kinlee on very little nap energy. I count that a win. Then this afternoon my lovely sister Rachel came by to drop off my birthday present… A dozen gorgeous white roses, and two tickets…for the two of us…to go see Michael W. Smith with the St. Louis Symphony Orchestra for his Christmas concert in December. AWESOME!!! My favorite Christmas album ever is Michael W. Smith’s Christmas . (Sadly, I don’t

31 for 21: Mom’s Car Exchange

I love cars.  They’ve been a hobby of mine since before I could drive.  Not like I work on them, but I like the pretty ones, I like the powerful ones, and I like to drive GOOD cars.  I really enjoy driving just for the experience when it’s a well-handling machine with spunky engine. But I’m practical, too.  And especially in the last 2 years, I’m also painfully frugal, out of necessity, mostly.  This creates a problem… Last year we opted/needed to get out of debt, and the only debt we had besides our house was the cars.  Two nice cars. Cars we loved.  I mean, we REALLY liked our cars. We were thankful for them, liked driving them, knew they were going to start when we turned the key and would get us where we were going in comfort and style.  They were “middle of the road” type cars in reality, but to us, they were perfect and we seriously loved our cars, though we NEVER forgot to be thankful for them every day. Used to be mine… Used to be M’s… In June of 2

31 for 21: Questions about eyes

There were a couple questions asked after the last post about eyes… Rochelle asked… Has Braska had corrective eye surgery for it? (nystagmus) And Katelyn’s mommy asked… Has Braska had surgery to work on correcting vision? If you have any advice on things we should specifically bring up to her opthamologist, I'd love to hear it! The answer to both is no.  But to elaborate a little, nystagmus is not generally corrected by surgery, or at least it doesn’t generally NEED to be corrected by surgery.  We have been told from day one that is doesn’t really affect Braska’s vision, that it doesn’t cause everything she looks at to shake or wiggle, as it would seem to me.  That said, she does seem to notice it somewhat, because she tries to avoid it, which is what causes the “finding the null point” issue of tipping up, or looking down her nose. As for other corrective surgery, it is possible that Braska may need it at some point, but it would most likely be for muscular c

31 for 21: More about eyes

If you missed the previous blip about Braska’s eye appointment, you can start here . This is gonna be a long one, but if you have an interest in tots and odd vision issues, this might be, well…interesting. As I mentioned as a teaser the other day, I had a couple of concerns that caused me to make the appointment we had on Monday. One was the tilting chin-up habit that Braska’s been perfecting for over a year now. Though it has become more persistent and more extreme in the past few months. The other issue is that she has been unable to sit on the couch and remain engaged in her shows. She has been requiring to be closer to the TV than ever before in order to stay tuned in. She has her yearly ophthalmologist appointment with Dr. C coming up in early December, but I decided these things needed addressing sooner than that. Plus I wanted to make sure that if we needed new glasses, we could get that done with what was left of our flex spending account. So off we went… Dr. S (optomet

31 for 21: Birthday countdown

Today’s my brother’s birthday.  He’s 34.  His birthday is 5 days before mine.  So when his shows up, it’s about time for me to practice giving the next higher number when asked, “How old are you?”  Admittedly, it’s not a common question since society is all proper now and everything. Since my birthday present was the concert tickets to see SCC a couple of weeks ago, this weekend will be  a tad uneventful.  And that’s ok… I’ve had so many birthdays now that people are just darn tired of acknowledging them every year! Happy Birthday, Jody… hope 34 is the best yet. (For his belated birthday present, he’s gettin’ a little baby girl!)

31 for 21: Eye vindication

We had a busy morning today.  Appointment with the optometrist at the Children’s Eye Center.  Note to self: Do NOT try to take two busy toddler girls, especially one overdramatic and sleep-deprived tot, to an appointment where you need to hold one of those girls—to her dismay, not the drama queen—most of the time during the exam.  Not wise. Dr. S is back! (He served overseas two times in the last couple years.)  He listened well, took notes, and validated my concerns and suspicions.  That is SO nice.  Too often docs are quick to dismiss and don’t listen long enough to get the whole back story.  I went in today with my info ready, my speech concise, and my concerns clear.  He took them all in and then observed. Braska has had a couple strange things going on lately that I felt sure were related to her vision.  The most obvious is that she tips her head way back when she watches TV or looks at a book that I’m reading.  When she tries to focus, she tips back, puts her chin in the ai

31 for 21: Wide eyed

Hands full. At Children's for eye appt. LOVE these docs! B is dilated and we wait for part two of exam. Enjoying the atrium and some tator tots to keep KiKi close to almost not unhappy. More later.

31 for 21: Note to family, friends, and various others

When watching football—or any other sport, or at any other time, pretty much—please know that little ears hear the words and little mouths can spit them right back out in a split second.  Thankfully, we keep company (mostly. ahem) with those whose “bad” language is still very mild, relative to the general public, not even on the “bad word” radar for most, but today we were reminded just how fast those words can be latched onto and reused. I’ve had to reorder my own way of venting momentary frustration—though my worst anger words aren’t bad enough to make the “bad word” list in the first place—but I’m still a work in progress.  It’s all cute and funny til they come home and try it again.

31 for 21: I feel. He says

I feel defeated. He says No, in all these things we are more than conquerors through him who loved us. Romans 8:37 (New International Version) I feel impatient. He says Wait for the LORD ; be strong and take heart and wait for the LORD. Psalm 27:14 (Today's New International Version) I feel hopeless, unsure. He says For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”   Jeremiah 29:11 (New International Version) I feel worried, anxious. He says Give all your worries and cares to God ,  for he cares for you. I Peter 5:7 (New Living Translation) I feel scared, weak, alone. He says "Be strong. Take courage. Don't be intimidated . Don't give them a second thought because God, your God, is striding ahead of you. He's right there with you. He won't let you down; he won't leave you ."    Deuteronomy 31:6

31 for 21: Not what you want to see on the floor.

While dressing the girls just now, I turned around to get Kinlee's shoes and look what greeted me in the middle of the carpet. Pardon the phone pic. Camera is broken. And I did rescue it from the floor before taking a picture. If you are not familiar, that is a Mic-Key button. AKA g-button or g-tube generically. That is how Braska receives 95% of her nutriton. And for those in the know, I am sure you noticed that the balloon is not broken. Nice. It works best when it is NOT in the middle of the floor. The feedings go better when it is actually in her belly. So a new one has been placed. Though it took somewhat more force than usual. (Insert nauseous look here.) But we are back in business. If anyone has any questions about buttons or feeding or the fun or a g-tube (They actually kind of rock in my book! ), this is a great time to ask.

31 for 21: Beauty

I’ve mentioned before that Braska is often called Beauty around here.  (KiKi, too, she’s not left out.)  She’s got lots of little pet names, which we’ll talk about in the next day or two… some aren’t as popular as others.   Last year I posted about Braska’s blog design , which is no longer there, but there’s an image below to show you what the background looked like. (Click on it to see it larger.) So I thought I’d put the image up again. Because I’m proud of it. Because it speaks to how I feel.  DS is no accident. It’s not a mistake. It’s not a goof-up on God’s part.  It is something that has brought a completely different story line to my life, and for that I am thankful.  It’s not that I just love my kid and think she’s good as is.  I appreciate all the things about her extra chromosome that make her what she is.  I have said many times that I wouldn’t take away the DS if I could.  It’s who she is.  I’m not offended that everyone knows she has it.  I tell peop

31 for 21: Well DUH mom!

Last night we were cleaning up the living room, and the panda pillow pet-type thing that lives in the corner was returning to his home.  Braska came over to me as I was reattaching his little strap to make the panda appear versus just the pillow.  She said, “Panda bear.”  I said, “That’s right.” Then I waited a second and remembered something we’re supposed to be working on. I asked, “Braska, is this a panda bear?” She said, “Yes.” I asked, “Is this a horse?” She replied, “No.” I asked again, “Is this a panda?” And she said, “Yes. Panda bear.” Simple as it may seem, this is a big deal.  We’ve been working hard on yes/no preferences for a long time. You see, usually, if you ask Braska what she wants, she’ll answer with whatever was the last option in the list.  And if you ask a yes/no question, it will always be “Yes” or “Yeah.”   You can ask her if she wants pizza for dinner, and she’ll say, “Yeah!”  But try to offer her pizza and you’re out o

31 for 21: A special girl

Last night I took Braska with me to WalMart. She loves to go shopping, and she’s always happy to sit in the cart and say hi to people or point out various items or letters that she sees.  She’s a fun little shopping companion, and I realized while we were walking in that I don’t get to take her much anymore because I usually go when she’s at school in the mornings. At one point, a lady from behind who had 4 little kids with her said, “Oh, she is SO cute!”  I wasn’t sure she was aiming her compliment at Braska, but then she cam around us a few seconds later and said, “She’s adorable! How do you keep her glasses on??”  [This is probably the most common question of ANY kind that we get when we’re in public.  Followed closely by “How can they tell what prescription she needs with her glasses??”]  I gave the general rundown of the fact that she’s had them since she was 13 months and just accepted them from day one because she could finally SEE things. As that mom moved on, an employee

Route 66

It is a beautiful day for a little road trip.

31 for 21: Go Bears! Take 1 Or 2 or 3

Simple request: Family Bears picture.  It’s a yearly tradition. Sure thing. No problem. We’re all dressed in BearsWear every Sunday…  just snap a pic, right?   I could caption these, but I’m sure you get the idea of how it goes.

31 for 21: walk in the park

Walking the warning track at Busch Stadium with about 4000 others for DS awareness...Walk In The Park. Then the game. Go Cards!

31 for 21: Want an iPod touch?

I don’t have one, but I’ve got a friend or two who would NOT be without theirs. Stephanie is offering up an iPod touch in efforts to raise funds for this little beauty to find a home.  Her name is Tori, she is in Eastern Europe, having already been transferred to the dreaded mental institution when she turned four, and she has a diagnosis of cerebral palsy. Stephanie just returned from rescuing her two precious boys from this country, she saw the conditions that so many sweet children live in.  She has a heart to help them find homes, and she’s putting her money where her mouth is and putting up the iPod touch for incentive for others to join the effort. It’s great. I will help her spread the word. Absolutely. But really, it’s a little sad to me that we need to offer fancy prizes for people to donate five or ten bucks.  It’s still sad to me that people can’t just hear that this child will in all probability die in the institution where she lives with others of varying de

31 for 21: Welcome back!

Here we go! (If that’s all I said, would it count as day 1?) I’m not sure how I’ll work the schedule to get this done, but I want to do it. I want to work through out loud some of the things that have been bouncing around in my head.  I might get much less sleep this month, but oh well. And to all you fellow 31 for 21’ers… don’t forget the beauty of scheduled posts.  Throw up a few when you get time and it will cover you for a few days, posting one per day.  If you don’t know how, drop me a line.  Super easy! Take the time to click on the button to the right and visit the list of those participating.  There are some great blogs out there that I’ve never known existed, so many new friends to make! And if you’re visiting because you’re browsing the list or checking me out from Tricia’s link in her post, glad you stopped by.  I’d love to have you along for the ride, so click on the “Follow!” button to the right and you’ll be on our adventure with us! Let’s have a great October