Just RK

Moon smiling

2012-01-30T23:14:00.001-06:00

I’m watching “A Smile as Big as the Moon” on my DVR right now. I’m about 25 minutes in and so far it’s cool. And it doesn’t hurt that there’s a particularly handsome young man featured. I might be biased.

Anyone else see it this week??

Tell me once again

2012-01-29T23:04:00.001-06:00

It’s been a rough week. Heck, in some ways it’s been a rough month. Few months. I can’t so much elaborate, but it has definitely brought about the need for some important reminders…

**It doesn’t matter what she thinks, it matters what HE thinks about me, and He thinks I am “wonderfully made.” Ps. 139:14

**When the love around me and hope for my future seem no longer sure, HE will not fail me. HIS love is unfailing. Ps 33:22, Jer 29:11

**My silent tears are not unnoticed. HE comes to my comfort. Ps 145:19

And music is always the avenue that reaches me in the strongest way…

“You are God, You are God, Of all else I’m letting go…
I’m running to your arms, I’m running to your arms,
The riches of YOUR love will always be enough.”
--Hillsong “Forever Reign”

“In the mirror all I see is who I don’t want to see,
Remind me who I am…
Tell me once again who I am to YOU…
If I’m you’re beloved, can you help me believe it?”
--Jason Gray “Remind Me Who I Am”

“Try and do the best you can, hold on and let Him hold your hand,
Go on and fall into the arms of Jesus…
He knows how much it hurts, and I’m sure that He’s gonna help you get through this...
When the waves are taking you under, hold on just a little bit longer, He knows that this is gonna make you stronger, stronger.
The pain ain’t gonna last forever, in time it’s gonna get better, believe me, this is gonna make you stronger…”
--Mandisa “Stronger”

I must soak in these truths, in the reality that is so very different from my perception. I need not dwell on these times of sadness. HE is here. He IS here. He is HERE.

Thank Goodness.

Young but talented arranger

2012-01-26T10:53:00.000-06:00

Lately KiKi has been taking to all kinds of new creative endeavors…

She’s been into painting, play-d*h, stickers, coloring, and fashion choices.

Most recently, she is all about the singing. Maybe it’s that one show with that Seacr*st guy on it… she’s seen a few seasons of that now. On Tuesday evening, she took to her “stage” (aka laundry basket upside down) and put on a little show.

I was impressed with her arrangement of the old classic. Some nice inflection, making it her own.

Then she moved on to another favorite…

Again, showing some interesting choices in musicality. The whisper effect is nice. The sudden southern accent is a little surprising.

The little “arm out then swing across the body for a bow” move is new as well. She rocks it.

She is NOT always this agreeable to being captured by the camera, so I’m glad to get these little shots.

The other thing she has taken up, as in just yesterday, is taking pictures with my camera. It’s a very small simple point and shoot. And don’t forget that SHE has a very cool kid’s digital camera that she got for her birthday last year. But suddenly, she prefers mine…

And honestly, they weren’t too bad for the first day… (She named these herself. No editing done.)

Chair

Easel

Light

Floor Toe

Braska Arm

Maybe this will be the beginning of years of great photography.

Don’t miss the little logo/watermark… created with her favorite pooch. She’s savvy. And Mommy has exposed her to plenty of photography websites…

(Don’t worry Pean*ts trademark people… no money being made here. )

Then and Now: My girl

2012-01-25T14:48:00.001-06:00

Just looking over old pics today, hunting a couple for M’s new digital picture frame…

Came across this one… pre-OHS, heart failure worsening, but stylish nonetheless.

Almost exactly 5 years later… healthy as a miniature 5-year-old can be. With twice the attitude…

Sometimes I wish I could go back a few years, do a lot of things differently. But for just this split second, it’s all ok. Her heart’s fixed and she’s a spunky little chatterbug who loves playing with her sister. If that’s all the happy I have left (and I’m sure it’s not), then I can’t complain.

Well it’s about time

2012-01-20T14:02:00.001-06:00

I mean, come on. You’re gonna be 3 next month. I was getting concerned about your development. Really. Reading at a first-grade level is great and all, but you gotta be able to do more than “just” read.

Whew. Now I don’t have to worry…..

Nice writing, little sis. And spelling, too.

(More over here… including video from earlier in the week. Really good stuff.)

Love/Hate interchange

2012-01-09T15:34:00.001-06:00

In the playroom, while I’m folding laundry in the living room a few feet away…

K: Braska, are you silly?

B: No, I’m happy.

K: Braska, do you love me?

B: No.

K: Why do you not love me?

B: (Almost sweetly) Because I will hate you… (See here for more on this odd response…)

K: You hate me??? (Pause) Braska, we don’t say hate. We don’t say that word.

Then the play continues.

No hard feelings.

(Any input on the strange “why” response always being the “hate you” thing? Feel free to share.)

I’m done at noon

2012-01-07T22:26:00.001-06:00

That’s what I said last night before I went to bed. I was scheduled to work from 6:45am to 12pm.

I left the house at 6:37am and arrived back home at 1:40pm. Only to almost literally throw clothes on the girls so they could hop in the van and go back with me by 2:00pm. M had to go do a side job, and there was a baby shower for a coworker at the branch. So the girls came with me. Oh, and I still hadn’t eaten my breakfast apple I took with me at 6:37am.

When that was done at 3:15pm, I clocked in again in order to finish what had to be done today and I left the rest to work on tomorrow when I’m there again for another 5.75 hours. The girls waited somewhat patiently until I clocked out again at 4:30pm. Thankfully, another coworker was gracious enough to play silly song games and entertain them for a lot of that time.

Best laid plans…

Most days I don’t miss the responsibility of management. Occasionally, though, I sure wish I had the power to make some changes.

The joy of being Kinlee

2012-01-06T11:06:00.000-06:00

She makes me smile, she makes me yell, she makes me laugh… She’s Kinlee.

Kinlee is the Braska translator and analyzer. Braska speaks well and often, not really needing someone to speak for her at home. But her sister will often pipe up and clarify what she said. And she always adds a commentary on how Braska feels about it or what her motivation for the statement or request was. Very helpful. Or maybe just amusing, usually. We do have to tell her regularly that she has to let Braska make her own choices and say what she wants or needs. Braska would be happy to let Kinlee speak for her most of the time, but recently, she has taken to getting a bit miffed when KiKi interjects, yelling “It’s Braska’s turn! My turn!”
Recently Braska asked for milk, KiKi said, "I'll get her milk!" She went into the kitchen, opened the fridge, climbed up on the ledge and grabbed the milk. Then she brought it to Braska and told me, "I'll help her drink this time" And she held it for her, Braska took a drink and said, "Thanks, Kinlee!" Adorable.
She is ridiculously smart and intuitive. She can tell a person how to get just about anywhere in our local area. Not like giving directions, but put her in the car and go, even from a different starting point, and she’ll tell you where school is and where Daddy works and where the Y is and how to get to Costco and Aldi. She knows a full grocery list for Aldi and loves being my shopping buddy there. She is very into feelings, and asks often how someone feels and why. She can tell you about right choices and wrong choices, and she gets very frustrated with herself when she makes “a lot of wrong choices” as she laments when she’s had a rough day. Her reading is now gone past the “1st grade level” mark. And she’ll be 3 in just over a month.
She is still SO dramatic at times. Very extreme in her own emotions. She can get excited and happy like a full-blown party, and then totally devastated and in meltdown soon after.
She is Braska’s biggest cheerleader. She helps her with so many things, and she sounds so teacher-like when she does it. She explains things to B, she walks her through steps of tasks, and she congratulates her and tells everyone when Braska’s done something great.
She is a pro at technology, which is fun to watch. She can operate her dad’s phone, my phone, and Auntie Rachel’s iPhone, all of which are different. She can access apps on each, and now she’s into sending messages. Typing. So funny. She loves to go to the photo galleries and scan through, reminiscing about what was happening when they were taken. She watches the videos over and over. She watches her favorite things on YouTube. She is a big fan of Starfall.com on the computer, too. It’s fun to see her enjoy the stories and read through them all. She can operate the TV remote, the DVR, the VCR (yep, still have one), and the DVD player.
She’s very into painting right now. Her favorite color is black. That’s what she says, and that’s what she uses. A lot. She prefers to have blank paper, then I have to write her name in LARGE block letters, then a couple flowers at the bottom. Then she’ll paint with watercolors for quite some time. I did this once a couple months ago, and now it’s a must have for each painting session.
The kid is obsessed with Red Lobster. She loves the sign. A lot. She finally got to go for the first time back in November, when Auntie Rach took her there for Auntie Ju’s birthday dinner. I didn’t go, but she tells me often about how she and Auntie Rach pretended they were gonna eat the lobsters in the big water tank. And since there’s a RL location about a mile from us at a major intersection we pass numerous times a day, she comments frequently about it and tells the stories of the birthday party dinner and the silly lobsters swimming. If we’re traveling and there’s a RL sign on an exit “food” sign, she is all about it. BUT—she didn’t really get into the food. Didn’t eat a whole lot. Doesn’t care anything about that. It’s all the experience and… well…the big RED Lobster on the sign.
She has great grammar for a 2-year-old, which is something I like a lot. She uses A and AN properly, she has most of her tenses figured out, even some of the catchy ones like BRING and BROUGHT. She asks for things with “May I please…?” But then again she refuses to talk at times when politeness would be appreciated.
She has some strange fear and anxiety issues…and she can comment often about something that “frightens” her. There are a couple red lights on TVs in our house that for some reason bother her. She sometimes won’t walk past the playroom to get to her bedroom because the TV in there has a tiny red light on it. “I’m frightened, Mom. I don’t like the playroom TV. Can you put my blanket back in my room, please?” Of course, we don’t do it for her. Sometimes we’ll tell her she can close her eyes or turn her head when she walks by. If she’s especially tired or in a mood, one of us might stand in the doorway as she goes by. It’s kind of funny sometimes what startles her or makes her anxious. But it’s very real to her, so we try to use it to teach, we help her work through them, and we do not make fun.
The insight and the anxiety sometimes make for interesting conversations. She was recently at Grandma C’s for a sleepover, and as the news channel that was on went to commercial, they mentioned a teaser for upcoming news on a small plane crash. She became very concerned about what happened, why it crashed, and why they weren’t telling her how it happened. Not in a crying/fear type of way, as I understand it, but in a need for information way. After waiting her allotted amount of time and getting no acceptable answer from the TV, she was persistently asking Grandma C what had happened. She asked Kinlee why she needed to know. Kinlee said, very matter-of-factly “When I get big I’m gonna fly one of those, and I need to know how to not crash it.”
The kid has one crazy sharp memory. Amazing. She can remember things that happened months ago, in detail. Some things she recounts often… like the fact that almost a year ago she was feeling sick as we walked into Costco and she threw up on the floor as we were trying to get to the bathroom. She had told me that she felt funny in her belly and that she needed help. It upset her a lot at the time that she threw up on the floor. Daddy taught her right about that time what vomit is. And when we go into Costco still, she will tell me about that time, all the events and feelings, and how she is not going to “vomit” on the floor this time. “Don’t worry, Mom. I’m not going to vomit today. I don’t need to vomit right now.”
She will tell in full detail what happened at Y-school or at Thursday school or at Sunday school. She shares about what each kid did, how the teachers responded, and how everyone felt about it all. And then, if I ask her a few weeks later about the time she went to Thursday school and made a pumpkin, she will go through all the happenings again if asked.
She’s been doing the big-girl potty thing for almost a year, which is very nice, but she has some strange quirks about it recently. She has taken to going as rarely as possible. It seems that she has one strong bladder. And her little memory/anxiety skills have brought about big issues with public bathrooms. We carry this with us at all times, in her little backpack, and it’s a lifesaver for both Braska and KiKi since they’re way too small to deal with a full-size public toilet. But--There was one instance, back at the end of the summer, when we were playing at a park nearby. She went to the restroom with me after saying she needed to go. I sat her on the toilet, (didn’t have the Primo with us) and I stepped away to the sink while she held on to the big thing. It had an automatic flush, and it was THE LOUDEST flush I have ever heard. Think freight train under your tush. It scared her half to death. She was screaming and trembling and hanging on for dear life. It took her a bit to recover that day, and she has since been terrified of public toilets. I often show her that it’s NOT an automatic flush toilet, or I promise her I’ll stay right there so it won’t flush. But she often just refuses to go and pleads to get down. I feel kind of bad about that one… wish I’d have thought about it and avoided that little trauma.
Overall, she is a lot of fun. A lot of work. And a lot of blessings. I’m excited for her future and I’m scared, too. She’s going to be a challenging kiddo, and I just pray often that we raise her very well. We aim to help her be all God designed her to be, for that is our job as parents of the gifts he has given us to care for. If handled appropriately in these early years, the girl will be a superstar at whatever she chooses to do. Can’t wait to see it…

Re-entry via Random Street

2012-01-05T09:41:00.001-06:00

Hopefully by now most of you have realized that we have not vanished into vapor and that I have, in fact, just been unable to blog in the preferred regular-and-with-worthwhile-content manner.

But after being gone, missing so much that has been so bloggable (IF it were not that I have too thoroughly mixed the IRL and blog worlds), where does one begin again?

Who knows.

So I’ll just throw out some stuff that’s been rattling around or that has happened in snippet form.

**Braska came in to my room this morning, and as she does often, paused at the light switch to flip it on. Only it’s already on with the light part of the ceiling fan turned off at the fan. Because I’m not a big fan of SURPRISE! It’s time to get up! lighting. She’s diligent, though, and she still attempts it every time. And for the few times I forget to properly arrange things, wow. Good morning to me. Doesn’t seem to bother her one single bit.

**Last night we went to the Y after a quick dinner. We don’t go often enough, partly due to the fact that I work there… and entry always comes with answering questions or explaining something. But the plus side is that when I do go to work out, especially in the evenings when “my” crowd is there, I know lots of faces and names and it kind of feels home like.

**I’ve learned more lately that I apparently have a bit of a craving for a Cheers-like environment. (not the bar part, the “everybody knows your name, and they’re always glad you came” part.) And I also realized that it’s been years since I’ve felt like I had one.

**Kinlee is really an interesting little being. One little girl—so many facets. This is a whole post in itself. Coming soon…

**The holiday season went pretty well. The past few months have been especially stressful for me, with work issues, family issues, kid issues, more family issues, and just life in our current world. All that stress made me much less able to enjoy the sweet things of the season. It also made me a grinch for many of the events. In the end, I feel like I’m reaching the point where I want to pare back the get-togethers and holiday parties and just be home more, making traditions of our own, enjoying the fun parts of the season that are free and simple and require no small talk or feigning interest in acquaintances that really only show up for holidays. Harsh, I suppose. But when my favorite holidays are marked by just wanting them to be over, something’s gotta change.

**I was doing well with healthy eating choices for a while before Christmas. I made it through Thanksgiving (my FAVORITE meal of the year) with no mashed potatoes or pie. Seemed so wrong. Then Christmas knocked me off the wagon. I’m back on now, and the damage is not too bad. Got some goals for the coming months, so here’s hopin’.

**My work schedule is finally easing up this month, that is, AFTER I get the two new trainees up and running to take over the weekends I have been doing far too often. I’m looking forward to cutting back and having weekends again to just be home a bit.

**I know I’ve mentioned this before, but seriously, who was crazy enough to name what I do as “stay at home mom.” It’s nuts. If I’m home 3 hours during the “working day” time, I’m thrilled. It’s just constant running these days. I’ve caught myself hoping for a very very big snow storm lately…electricity stays on, but we can’t venture out. Good combo.

**New Year’s Eve was kind of pathetic this year. A couple came over, friends that we’ve spent New Year’s with for 3 years now. But this year I was ready to be in bed by about 10. When did life get so exhausting? But so far, the new year is proving to be doable. Which is a good thing, and not something I take lightly. Recent times have done me in too frequently. I’m working on a new outlook and the changes to help it come to be.

There you go. All the excitement you hoped for, isn’t it?

Jolly Holly Time

2011-12-23T10:43:00.000-06:00

Other duties as assigned

2011-12-07T22:29:00.001-06:00

I work at the Y. My job description is very long and varied. (I totally underestimated how much info one would need to access on any given shift.)

But being a living mannequin for tutu-creating co-workers (for a work event, of course)… I didn’t see that on my list of tasks.

Must be under that famous “other duties as assigned” line that is always at the bottom of the list.

Lest anyone try to say that I don’t enjoy my work…

Shutterfly winners!

2011-12-05T18:47:00.001-06:00

It’s only taken me for.ever. to get this done. Life’s nuts, but it’s the holidays… whose life ISN’T nuts?!?

Ok, get to it already… I hear ya. It’s time for Christmas cards to be going OUT!

Jessi, Kristen, and kthomas. The 25 free cards codes are yours!! If you haven’t received the code from me in your email today, send an email to braskasmom at gmail. com and I’ll send you each your coupon code so you can get them ordered pronto!

Dad and Angie… if I had two more codes, they would totally have been yours!! Thanks for playing!

Blogged myself into a corner

2011-11-27T23:07:00.001-06:00

First, thanks Cate for noticing my absence.

When you tell everyone in your real-life world about your blog, you shouldn’t be surprised that there comes a day when it’s hard to blog about what’s happening in life and still keep things socially kosher. Hmmmmm. Lesson learned.

Things are ok, don’t worry. And none of you IRLs should be paranoid. Just a lot going on in my head… wonderings, musings, thinking, and pondering. Stuff that needs to be hashed out. But not here.

When I get time to get back to documenting some of this crazy life that’s flying by, I’ll let ya know.

“Belittled.” Well timed.

2011-11-08T22:24:00.001-06:00

I have been having internal battles a little bit. But feeling rotten about feeling rotten about “unworthy” things in the midst of the more important pain of those around me.

Then today, right in my inbox, there’s this…. Belittled. Take a moment and read it. Please. Then can you do me a favor and tell me if you can relate? Did this hit home with you too?

My favorite part…

The grace of God and of friends in the valley is needed. Counting stars during the long, dark night of our soul is more comforting with others beside us. The first ray of light often is glimpsed by them anyhow. If you are longing for a close companion, pray for one. Perhaps joining a small group, calling an acquaintance for coffee, or helping a neighbor will be the beginning of a beautiful friendship. (emphasis mine)

No matter what other voices have said, your pain is valid.

Would love to hear your thoughts on this article… It encourages me.

And if you’d like to get that kind of good stuff every day, here’s what you need. I’m looking forward to what comes next…

Braska's first

2011-11-05T23:47:00.000-05:00

Tomorrow my daughter will attend her first memorial service for a friend. It is so wrong that , before her 5th birthday, she will know what it is like, in her limited understanding, to be a part of a celebration of a life that is no more on this earth.

Tonight before bed we prayed, as we always do, for friends and family, for our sweet friends who need mommies and daddies, and as we have for 8 days now, we prayed for Maddy's mommy and her brothers. I know the girls don't understand fully, but we have talked about how sad Maddy's mommy is that she can't hold her anymore. And they understand sadness. It is just no fun that this is part of their childhood. But that is life here and now.

I'm thankful that we have more than this life to bank on. We are just passing thru, as the old song says.

Please be in prayer for Madison's family and friends tomorrow, specifically at 1 pm when her service will begin.

Parenting. The strange moments.

2011-11-03T22:45:00.001-05:00

I just ordered this.

And I’m excited about it!!

Then it hit me, that I’m excited about a DVD and CD about using the bathroom. I mean, it makes total sense for my current station of life, but wow… I still sometimes get a little taken aback by the things that can bring a thrill in this house these days.

But hey, it goes both ways. There’s nothing like the two little girls clapping and cheering for me outside (or sometimes inside) the bathroom when they hear the telltale tinkle. “Good job, Mommy!” Or Braska’s crack-up line… “That’s a great potty Mommy! Give me five!”

Life is sure funny sometimes.

31 for 21: The wrap up. Bullet style.

2011-10-31T21:16:00.001-05:00

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 abortion and follow-up epilogue.
- A few posts about phraseology and terminology in the DS world, here, here, and here. Different slant than that of many, I admit.
Back to October 31… it’s my mother-in-law’s birthday. She’s a good one. You should all be jealous. (Happy Birthday to Rainer, too!)
Lastly about October 31, I’m so not a fan of Halloween. I would love a dress-up-in-cute-costumes-and-have-fun-parties type of holiday without all the dark, scary elements. I do enjoy the fun that is picking cute costumes for the girls, of course. But the rest of the holiday… no thanks. I generally avoid the night of the 31st completely, just staying in. We have gone to our church’s fall festival in the past few years, but this year, we skipped. I don’t want KiKi having all the candy (or any, really), I definitely don’t want to have to be tempted by it, and Braska could not care less. So home we stayed tonight. And it was kind of nice. I’m quite aware that it won’t always be that simple, and I’m not a total spoilsport, but while it’s not so much on their radar, I’m good to let it slide.
I may take a few days off from posting, depending on what happens and if I have time without “making” time at 1am to do posts. But you’ve got plenty of old links to check out up there if you’re new around here. If you’re not new, leave a comment every time you come and don’t see new content… that would be fun! Remember that if you sign up on the side for email subscription or join as a “member” over there, you won’t have to check back. Your snazzy computer will tell you when there’s something new to see.
Speaking of leaving comments… are some of you having trouble? I have had this mentioned a few times, and I’m wondering if it is broader than I figure. If you have a Google account, is it giving you problems to make a comment on this or Braska’s blog? In case you didn’t know, you can always use the “Name/URL” option, put your name in the box, leave the URL box empty, and comment that way. It’s nicer than “anonymous” but still doesn’t require a login. Just so ya know…
Finally, I will be attending the memorial service of a 4-year-old girl on Sunday. I’ve been to literally dozens of funerals in my life in various capacities, but never one like this. It will be a celebration of her life, complete with lots of pink and popcorn, I hear. It will be difficult to attend knowing the loss that has occurred, but so much farther beyond excruciatingly devastating for the loved ones there. Please continue to pray for Maddie’s family, especially her mother.

31 for 21: It’s that time again. Shutterfly time!

2011-10-30T18:26:00.001-05:00

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? food??

And I’ll choose 3 winners to receive 25 free cards each on Friday night, 11/5/11.

To get you started, I’ll say that one of my favorite things is the first Christmas event I get to attend. It’s most often a musical event of some kind. I just LOVE Christmas concerts, plays, etc. I always like to have one in early December to get things kicked off just right… so far I don’t have one on the calendar, so I’ll be looking for a great one!

Also, more soon on this, but start thinking about the Happy Bloggy Holiday Card Exchange! I’m hoping we expand to quite a few more than last year!

31 for 21: Emotional duplicity

2011-10-29T20:58:00.001-05:00

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 mundane it is to maneuver our vehicles every day, but how quickly they can become dangerous. So quickly.

I sat and watched my girls enjoy their friend’s birthday party, surrounded by his family and lots of smiles. There was a moment while I sat there that I imagined what another family was feeling tonight. The focus again on a sweet child with Down syndrome, beloved by so many, and yet there are surely not many smiles there.

So many beautiful opportunities today to celebrate being a parent to these two princesses and dozens of hugs, kisses, and laughs. And I cherish them. I do. But today, I almost felt guilty for enjoying them when I know a friend is so desperately hurting. And yet, I’m sure, the embracing of the moments like these are what mothers who have lost littles would most vehemently encourage.

It’s still hard to feel divided. And even in saying that, it feels irreverent to say anything is “hard” when this is not even remotely about me and my sadness. The pain of those freshly wounded is the focus. It’s the focus of my prayers, and that is by far the most powerful thing I can offer. Hold them, Lord. Hold them so tightly.

31 for 21: Sweet angel Madison

2011-10-28T23:46:00.000-05:00

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.

(Please feel free to post this button and please pray for this family.

31 for 21: TWO. WORDS.

2011-10-27T23:54:00.001-05:00

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!

31 for 21: Perspective--Like a broken record

2011-10-26T23:51:00.000-05:00

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 closeness and shared values and family and spiritual goals like we’ve had before. And we miss being able to hang out with friends casually and often. And yet—we now have our families close. We see them often and they’ve become kind of like our core friends. It is different, but it is nice at the same time. This is just the season we’re in. It’s all about perspective.

My daughter is delayed. She has Down syndrome. She doesn’t know how to chew at this stage (though she’s getting better and that’s NOT a “DS thing” by the way). She needs help to do most things still, even at almost 5. BUT—she is the brightest light in my day, the go-to girl for a great hug, a big laugh, and a sweet spirit. She makes hardly any mess at meals, which I count a perk! And she has introduced us to an entire world, including some of the most amazing people, therapists, and opportunities, that we would never have known. It’s all about perspective.

So today after I cleaned a house this morning as a side job, then returned home and managed to find the energy to tackle mine, I paused a bit as I surveyed my freshly-ordered kitchen with pride.

I was surprised that I was proud. This is not the picture of my ideal kitchen. It would include totally clear counters and matching appliances, just for starters. MUCH less on the fridge, both on top and on the front. And the clutter on the chairs…lunch bags and bibs, boosters that don’t match. Wallpaper border on the wall that I swore would be gone the minute we bought the house, yet it remains, in places, 3 years later. All these things are not part of my “ideal” picture, something that I would expect to see before I’d feel pride in my kitchen. (I talked about my “lowered expectations” in my kitchen a few months ago.)

What I realized as I stopped to look around this evening is this… I’m proud because this kitchen speaks to so many things about my life right now that are GOOD. The boosters and bibs are for two healthy girls. The fact the table is even there and being used is a huge deal in itself. The lunch bag marks M’s job that he likes. A lot. And that’s more important than I can explain. I have lovely flowers on my table that my husband sent me for my birthday. And they’re lasting a long time, which is so nice.

The clutter on the counters marks not only an abundance of provisions for our family, but also the time I spend doing other things. I’m not so bent on getting to the place of pristine counters that I neglect reading the 23rd book of the day to the girls, or stopping to go outside and crunch leaves for a while with them, or going to a playgroup to meet and encourage other moms who are following behind us on this DS journey. The stuff on the fridge represents everything from family friends’ pictures to scriptures that encourage me, to art the girls have done, to contact information for physicians we like and businesses that have treated us well. There are notes about school events, our very active community group for DS, and coupons that will save me money.

Is there a more organized way to do it? Sure. I wish everything had a handy home and it was out of sight. I’d love to have twice as many cabinets if not even more than that. But we live in a small house. The sum of these two pictures is about 1/4 of the whole thing, not counting the basement. To say space is limited is a serious understatement.

But even in that, the smallness of my house, which I have struggled with frequently over the past 3 years, I can now see the benefit. Less to clean. Less room to store junk we don’t need. Forced purging opportunities show up often. And goodness… we HAVE a house. We live with warmth on cold days and have comfy places to sit and sleep.

It’s all about perspective.

I fail often at this attempt to look on the bright side, to focus on the “thank you” instead of the “I want” tendencies I have. But tonight, I was pleased and I am grateful that this once, I had a perspective that allowed me to look at partially clear counters, freshly mopped floors, and a clean table with fresh, appreciative eyes.

What about you? Where do you notice your perspective changing?

_________Now, as a reward (or punishment??) for making it through all that__________

I give you the OUTTAKES…. while I was attempting to take pictures, my oh so goofy husband was prancing around in my way… yes, in only partially clothed fashion. This is what we do with all that free time that used to be taken up with friends and socializing! Don’t you wanna get in on this action??

31 for 21: Smilin and a-swingin

2011-10-25T22:10:00.001-05:00

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

31 for 21: Delegating

2011-10-24T23:05:00.000-05:00

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 new appendage… 09/10/2007

She is 4 years older and 12 lbs heavier now. Growing slowly but surely!

31 for 21: Playtime with PSE

2011-10-23T22:16:00.001-05:00

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. Be sure to leave a thanks for her for doing that by request for all of us!

Remember, if you need a siggy or a fresh blog look or just a cute collage for the cover of your little one’s school binder, drop me a note with what you’re looking for and we’ll make neat things together!

And can I just say how cool/weird/fun it is to see one of my buttons flying ALL over the blogosphere?? With lots of input from the fabulous Tricia, of course, my most famous image is obviously this one…

Grab This Button

31 for 21: Birthday funny

2011-10-22T23:55:00.000-05:00

(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!

31 for 21: If you need MORE blogs to visit…

2011-10-21T09:17:00.001-05:00

Crazy Beautiful Love is hosting the Hoppin’ for 21 Blog Hop today.

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!

31 for 21: Bare minimum

2011-10-20T23:31:00.001-05:00

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.

31 for 21: Thank goodness for medicine

2011-10-19T22:28:00.001-05:00

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.

Rest time now

2011-10-19T12:39:00.000-05:00

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.

Dressed and ready

2011-10-19T08:38:00.001-05:00

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

31 for 21: Another surgery eve

2011-10-18T23:20:00.001-05:00

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 about 8:30 am I would guess.

I’ll be trying to update on the blogs, but following the Twitter feed either via Twitter or on the right margin of this blog might be a up-to-the-minute option, if you’re into that kind of thing.

Prayers for complication-free procedures, very alert and wise OR staffers, and strength for us as we comfort her through it are very much appreciated.

31 for 21: Little gifts

2011-10-17T22:40:00.001-05:00

Happy birthday to me!

Birthday smooches… always a winner.

31 for 21: Win Win Win

2011-10-16T22:52:00.001-05:00

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 to StL… see ya Wednesday, Rangers!

31 for 21: Brakes please…

2011-10-15T23:39:00.001-05:00

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, wave bye to Daddy and the girls who head home.
*5pm close up and head home at 515.
*520 arrive at home, kiss silly girls, jump in the shower.
*In the following 35 minutes—shower, dress for church, do hair and makeup, dress two girls and do hair, pack bag for Braska’s dinner since we’re going out after church.
*555 pm head out for church.
*600 arrive at church, trek up to the children’s area and drop the girls off.
*730 church is over and we head to dinner with sis and bro-in-law for my b-day mini celebration.
*930 arrive home with one girl asleep and one almost. Change girls, tuck into bed.
*1000 pm turn off lights, grab computer, and park in bed for last minute blogging.

Maybe some people can handle this kind of schedule all the time and never flinch. I’m not one of them… but I’m thankful I now can go to sleep in my super comfy bed and rest up for another BIG day tomorrow.

31 for 21: Comments on sleeping locations

2011-10-14T22:52:00.001-05:00

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 weeks pre-surgery in a special bassinet, but once that heart was ok, she got the boot to her room! :o) Kinlee was in her crib in her own room from night one, unless Grammy was here, then she was in her bassinet next to her.

Even now, they're in the room next to mine, maybe 10 feet through a wall from my bed to theirs, and I still often can't sleep because of the noises. WITH a sound machine on to dampen the sounds. Frustrating!

31 for 21: In just under the wire

2011-10-13T23:53:00.000-05:00

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.

31 for 21: KiKi the reader

2011-10-12T17:28:00.001-05:00

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 will continue…as long as her fashion sense doesn’t suffer. tee hee

31 for 21: Full day. To the brim.

2011-10-11T22:42:00.001-05:00

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.

31 for 21: Scrappin’ for Grandma

2011-10-11T10:13:00.000-05:00

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?

31 for 21: Braska’s 2011-2012 IEP, Part 3

2011-10-10T08:04:00.000-05:00

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 verbal response. She has more success answering questions correctly during natural, play settings. During structured tasks, Braska often pretends being “silly” and gives incorrect responses.
~Braska has made great progress identifying functions of objects from a field of four (ex: Find the one you use to eat? to draw?), demonstrating increased receptive (understanding) language skills. She is able to answer some object function questions expressively by labeling what to do with certain items.
~Braska uses the present progressive verb form (verb+ing) to answer many what doing questions (ex: running, jumping). She answers these questions with minimal cueing in the classroom.
~She uses language most often when commenting on classroom activities/happenings or refusing (ex: No thanks.)
~Braska is beginning to independently sort pictures of boys/girls. She has more success when shown faces (versus) full body photos of boys and girls.

There are so many parts of this that I could comment on so far… that’ll be for next time. Questions about anything in the PL?

31 for 21: Super cute homecoming queen

2011-10-09T09:51:00.000-05:00

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?

31 for 21: Braska’s IEP, part 2

2011-10-08T11:19:00.000-05:00

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 jump forward 2-4” with two foot take off and landing and has been able to jump over hoop placed on floor with a two foot take off and landing.

Fine Motor and Sensory
~Braska uses a right three-fingered static grasp on short writing tools.
~Braska recently began squeezing tongs to pick up small objects. This is a new skill and Braska continues to refine this skill.
~During bilateral cutting activities, Braska uses loop or self-opening scissors. She repeats the ‘scissor placement song’ but often will need hand-over-hand assistance to place scissors on her right hand and stabilize the paper. Once positioned and with physical assistance, Braska can snip paper. This skill is emerging.
~She is hesitant when working with wet/messy tactile materials (i.e., paint, shaving cream, play dough, and putty).

Cognitive
~Can rote count to 20
~Can identify and name her upper and lower case letters
~Is identifying basic concepts
~She has greatly improved in her attention and participation with minimal cues.
~She recognizes her name in print and several of her small class day friends’ names as well.
(Not included but noted to be added by her teacher… Can identify more close to 100 sight words, as has been observed at school. Not sure of the exact number she knows.)

Adaptive
~Braska is better able to care for her arrival duties this school year with the use of verbal cues to put her backpack away, get her nametag, pick her job, and wash her hands.
~Braska needs assistance with getting clothing and coats off and on. She struggles with these tasks due to balance and coordination. She has been assisting with pulling up her pants at bathroom time, but needs help getting them past her bottom in the back.
~Braska is drinking 1-4 ounces of liquid at a time from an open or lidded, spouted cup. Her total intake per day of fluids taken in these ways is a minimum of 20.
~Braska needs assistance during hand washing time. If left unattended to care for this duty on her own, she will play in the water and soap. She likes to put the soap bubbles on her face and eat the bubbles. She needs to be reminded the steps of hand washing and assisted with properly drying her hands.

We’ll start with Social/Emotional/Behavioral next!

31 for 21: Braska’s 2011-2012 IEP, part 1

2011-10-07T14:08:00.001-05:00

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 IEP meeting of any kind without some kind of goodies. If in a hurry, it could be M&Ms or trail mix, but I generally bake, since my meetings are usually at 9am. I’ve done coffee cake, donuts, cinnamon rolls, pumpkin bread, and others. Sometimes I’ve even taken little pairs of wrapped cookies so they can take and have after lunch, too. Some meetings I’ve taken drinks, others I’ve skipped that part.

This time, with sick tots the days leading up to the meeting, I went the easy route… Great Harvest Bread Company and QT. I picked up a couple kinds of fall breads, Cranberry Almond and Cinnamon Chip, as well as some blueberry cream cheese scones. Then I hit QT on the way and got 4 large cappuccinos in different flavors, with extra cups so we could share them. These are always a hit!

All in all, super easy, not expensive, and the impact is huge. These team members do a lot of IEP meetings, they work with kids all day, and to sit in a meeting with something yummy to nibble on and a pick-me-up drink is a treat to them. They are always excited, even though my team knows there will be goodies before they get there. Julie and I have developed a bit of a reputation at our school. And we’re trying to teach the other parents we come in contact with how big a difference this can make to the comfortable feeling in the room. It puts everyone at ease and makes the whole process less business and more conversation, which tends to benefit all involved.

Once the food is all arranged and people are settled in, we generally start with the Present Level element. This just states where Braska is currently in a variety of categories. I like that they start with her strengths, then talk about her areas of weakness (none of which are a surprise, of course) and then we go over each of her therapy areas to talk about her current abilities.

Some snippets from Braska’s Present Level:
Strengths
~Letter and number recognition.
~Sight word identification
~Happy and enjoys being around peers and teachers
~Greets adults by name
~Easily adapts to changes in her day

Weaknesses
~Difficulty in visual motor interferes with task completion and fine motor skill development.
~Delays in sensory processing, motor planning, and self-help skills interfere with Nebraska’s feeding and drinking tasks during snack time.
~Decreased receptive language skills affect her ability to follow directions with 2 or more components.

I’ll continue with more of the Present Level next…

What’s your IEP experience? Good? Bad? Dreading the next one? Why?

31 for 21: Q&A #1

2011-10-06T14:44:00.001-05:00

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...feel free to shower me in begged for advice.

Alright, my friend…deluded as you may be to think I’m organized… #1 rule of IEPs as far as I’m concerned—Go in with goodies in hand. Baked goods are best, candies or trail mix to munch on can work too. Something that sets you apart as a parent who thinks that this event of the IEP meeting is to be dealt with both gratefully (because we are blessed to have the access to extra help for our kiddos…sometimes I think we forget that) and somewhat touched with the comfortable. In other words, often IEP meetings are stressful, though mine have not ever been that way honestly, and starting off by brightening the day of the team you have by thinking of them enough to bring something they weren’t expecting… let’s just say it goes far. I’ll address this a little more in an upcoming post about Braska’s IEP today.

Otherwise, dearest Cotes-a-licious, you’re all over this, I think. Be aware of what your kids strengths are, and take a printed page listing them, elaborating however you like, to share with each member of the team. Many times, if the team has not come to know your kiddo yet, take a pic in a frame, or a collage, so that the face is there with them as the meeting goes on. More than a name or just list of delays…we want our kids to be kids, cute faces to go with the diagnosis, minutes of therapy, and accommodations. I have a binder with my IEP stuff in it (though I took the wrong one today) that has a printed digiscrap collage on the cover so she is always there smiling at us.

Because our kids will always perform better at home or with familiar people than at school, at least in my experience, I like to write out a “present level” from my perspective. A run-down of the strengths that Braska has right now, the things she is struggling with, the things she loves to do, and the things I want her to be focusing on in this next year. I print it and have copies for each team member. It gets placed with her IEP as my contribution to the Present Level section of the document.

There’s lots more stuff about laws and least restrictive environment, etc. There’s plenty of things to read and know about, and I can share more about those, but I’m very thankful that we’re in a school who is up on these things, ready to do what’s best for Braska at each juncture, and I have been able to truly trust that they’ll always provide the best care and education. And so far, they have done just that.

More on IEPs soon!

31 for 21: IEP time

2011-10-05T21:46:00.001-05:00

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.

Still fighting fever

2011-10-04T22:41:00.001-05:00

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 digital scale too if I had one or could carry it… really.) So I showed on the memory read-out on the thermometer what she had registered out in the waiting room. 102.8. But when she used the one in the room, the stick kind that’s meant for oral but they use axillary, it read 98.5. Nice. Hence my taking my own to make sure we get a proper reading. I showed the MA what it read on ours just then, 103.1 at that point, and she made a note of that. When Dr. A came in, she went back to find their temporal thermometer, and once they found it, it read 103.4. So I was glad, as I have been several times, that I come with my own. I first took it to verify that I was on with their “official” thermometer, so I knew I’d have correct info at home. But it just served to show how inadequate their in-room unit was. That’s ok too.

There’s your little tip for the day… if in doubt, bring your own along.

Anyway, after a strep test and urine test, all is clear except for dehydration indicators. KiKi is not a big fluids girl on a good day, and today I’m thinking she may have had about 6 oz all day. And that was with heavy pushing and pleading. Not enough. She hardly ate a thing, too. We need that to improve quickly.

Tonight she’s in bed, after asking oh-so-politely to be put to bed. She was at about 102.1 when she went to bed on a fresh dose of acetaminophen. I’ll check on her in the night again.

I’ve been feeling like I am trying to fend off a cold for a couple days, and my energy is sapped. All things considered, we’re a mess over here. But we’re surviving and praying that it’s all done soon.

Braska is scheduled for eye surgery and dental work under anesthesia on 10/19…so we MUST keep her well. Prayers appreciated.

31 for 21: Shop for Special Olympics

2011-10-04T11:37:00.001-05:00

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!!

One hot little tot

2011-10-03T21:34:00.001-05:00

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 to shiver. We did force Tylenol before bed. She didn’t approve.

Poor little tot.

31 for 21: Mini Audition

2011-10-03T00:20:00.001-05:00

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.

31 for 21: Down syndrome - - -because

2011-10-01T22:10:00.001-05:00

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 blessed I am…so much so because my daughter has Down syndrome.

31 for 21: Here we go

2011-10-01T07:19:00.000-05:00

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.

20 years ago today…

2011-09-27T08:42:00.001-05:00

20 years ago, I was a freshman in college and loving it.
20 years ago, I was almost 18 years old.
20 years ago, I was the oldest of 4 kids in my family.

Until #5 was born… 20 years ago today.

Happy birthday, Ryan! AKA, Buddy Fella, Fry, Squeak #2. (Wow, those are from a LONG time ago… I’m so out of date on nicknames.)

I’ve never actually resided in the same house as this sibling (and another one following him…stay tuned for that birthday in November) but I’ll vouch for the fact that he still ranks high on my list of sibs. Smarter than seems humanly possible, witty, polite and gentlemanly, athletically blessed, a fine example of faith, and totally thriving in the best and won’t-regret-it-later kind of way in college. We’re all pretty proud of him.

(And yes, little brother, if you see this, I clipped this from your FB photos. And yes, I searched a long time to find one of you withOUT a cute young lady next to you. And I did not succeed. So my apologies to whoever I cut out of this one. She’s nice, I’m sure. But really… how do you have time to stop and smile with so many? )

Lunch visit

2011-09-21T23:01:00.001-05:00

Today we went to Jack and Dashlyn's house after school to play and eat lunch. It is so nice to have friends close by!

Understandable confusion

2011-09-20T14:54:00.001-05:00

Kinlee picked up this picture today out of a photo album of “baby Mommy pictures” that the girls look through sometimes.

She looked at it for a moment and said, “Mommy, who is this holding me?”

I told her it wasn’t her, that it was me and that was my babysitter and Santa.

She looked at it again, pointed, and said, “No, who is holding ME?”

It must be the emotion that’s tripping her up. Or maybe it’s the finger in the mouth. Or maybe it’s the stylish attire.

Pathetically proud

2011-09-17T23:56:00.001-05:00

This is my kitchen floor.

It’s clean.

The fact that I’m proud enough of it to take a picture and post it… pathetic.

Yes, it’s that rare.

And it’s almost midnight.

But I got it done.

The kitchen is “clean” in my new normal way.

That happens occasionally.

But for me to actually clear the floor space and sweep and mop the floor. Twice. Because I’m sure it needed that second pass. That’s something.

Now, tomorrow it’s on to tackling the piles of clothes in the girls’ room.

Sweet face. Smart girl.

2011-09-14T23:48:00.001-05:00

She’s pretty, isn’t she? I’m biased, and yeah, she resembles her mom a little… what can I say??

But really… sometimes I’m just surprised at how sweet she can be. Like when I told her the other day that I didn’t feel well, and she jumped up from across the room where she was playing. “Mom, don’t worry, I’ll come give you a hug and a kiss and that will make you all better.” She proceeded to do just that, with gusto. And darn it, if I didn’t feel a bit better right then.

She has been returning a bit to the ultra-dramatic phase, and that’s no fun, but in between… she is pretty fun. She has a “buddy” for various things… Daddy is her “swim buddy,” Miss Julie is her “QT buddy,” and of course, her “shopping buddy” is Auntie Rach. Just ask her. She’s happy to tell you.

Quite often, she will ask about feelings… “Mom, how are you feeling?” And she is not asking about feeling tired or sick. She wants to know if I’m “pleased” or “grouchy” or “sad.” Those are her most common options. She will assign feelings to people around her, (even the dog) comment on the feelings she sees in people faces, and when she does wrong and sees less than a “pleased face” on me, she is so sensitive to it. And yet, sometimes it seems she just can’t keep from making bad choices.

She’s very into reading. Like reading books, signs, ads, anything. She asked if she could look in my purse today, and she picked up a pack of gum and said, “Mom, why does this say “Big Red?” I know she can read those words, but it’s just funny to me when she pops up with those things in real life use.

Her sight word list is well over 200. And she knows all her sounds and is getting a lot better at sounding out words phonetically. It’s amazing to watch her LOVE to learn. At 2 1/2 years old. Except for the writing element, she meets and far exceeds all the requirements for kindergarten. (As does her sister…)

I’m not the best mom, and I often have days where I fail more than I succeed in parenting. But I’m so grateful to have these two girls to stick with me as I try to get it right.

Longest in a long time

2011-09-13T07:59:00.001-05:00

Braska had some kind of weird night. It started yesterday afternoon. She napped ok at Auntie Rachel’s while I was taking care of some things there. Then she woke and seemed “off” or not herself. She had a GREAT day at school yesterday, by all accounts, doing really well with feeding therapy (yay!) and classroom.

We came home about 6 p.m. and she spent the evening very agitated. She didn’t want anything we offered. She acted exceptionally fidgety and had the sad, pouty face a lot. She would flop on the floor, roll around and whine, then get up and take a few steps before flopping again. When we would try to hold her, she’d squirm and then slide down off our laps. Everything we asked her about received a “No, not yet,” response with a very pathetic tone. A few times she was knocking her head against the cabinet in the kitchen while I was there, and then the stove. She only did this a few times, but I didn’t care for it one bit.

At one point, I was able to distract her with the sight words flashcards that she loves, and she seemed to kind of normalize for a few minutes, but then she returned to the highly agitated state. She didn’t seem to be in pain, per se, but she was clearly very uncomfortable.

We tried to put her to bed, but she thrashed around in her bed and would not settle down. She didn’t cry, but grunted, sort of. She didn’t grind her teeth, which I found odd, because that is almost constant when she’s tired and not feeling well. After about two hours, I got her up and rocked her, thinking I could help her calm down. She went to sleep after I had held her pretty snugly and fought her fidgets. (We do occasionally have to do this, hold her tightly and kind of assist her with turning off for the evening. I’m sure it’s a sensory thing as well, but it’s usually easily dealt with and over for the night.) She gave up and went to sleep, but as soon as I laid her down, she was awake and upset again. This happened several times.

I took her into to my bed, thinking I could lay with her next to me and hold her tight to go to sleep, then she could just stay there instead of being moved. Unfortunately, that means I do not sleep. Even when she is sleeping well. I just hear every breath and sound and wake with all of them.

But she did not sleep well even in our bed. I tried every kind of pressure on her, including wedging her between me and a very heavy feather pillow. It was clearly a sensory issue, in my opinion. It was like she could not stand being in her own skin. She just could not get a moment’s reprieve from whatever was bothering her. She would sleep for about 15 minutes, and then wake thrashing again for the next 30. Then more sleep for 15 minutes, and on and on it went. We even gave her a small dose of melatonin and it did not help one bit.

Several times I tried to take her pulse to see if her heart was racing. But I literally couldn’t get her to be still long enough to get it. Her respirations were definitely faster than usual, but not rough or labored. It was really bizarre. And it just kept on.

I curled up at the end of my side of the bed and tried to sleep, but it just wasn’t gonna happen. I did get a few little spots of 15 or 30 minutes at a time…not nearly enough.

About 3 a.m., I changed her diaper while she was thrashing and already awake. (She’s been overflowing diapers at night lately…can’t have that in our bed!) She went back to sleep after some more tight rocking, but it only lasted about 30 minutes.

She slept a little longer with shorter bouts of agitation as the morning went on. And when M got up at 6 a.m. to get ready for work, I slipped into his side of the bed to try to sleep. She woke about 7:30 a.m. and seems ok. I can’t imagine how that’s possible. I’m debating whether or not to take her to school. Can she possibly be worth anything with so little real sleep?

I feel completely run over. And it’s a busy day full of must-do items. I actually have a scared feeling when I consider getting through the whole day. Strange.

And it bothers me that I have no idea what was going on. What in the world would cause a reaction like that? She had no red dye yesterday, which is slightly like what I would have expected with this reaction. But it’s still different. I just don’t know what it was. And it honestly makes me afraid that it will happen again.

I hope it was a strange one-time occurrence.

Anyone have any thoughts??

We should never forget

2011-09-11T00:18:00.001-05:00

It’s hard to watch the footage of 9/11. It’s hard to hear the stories. It’s hard to deal with the reality and gravity of what happened.

But we HAVE to remember. We HAVE to honor the lives that were lost that day.

And we MUST never forget what happened to our country that day. As hard as it may be, hearing the stories and acknowledging the loss and the pain that was caused by the actions of other humans… it is necessary to be sure we do not allow the true horror of that day be left behind.

We move on. We have, as a country, continued to live. But to forget what occurred that day is dangerous. We must always be mindful of what can be. Not in a fatalistic and pessimistic way, but in a realistic and honest way.

I know that many people don’t want to think about, hear about, or talk about the stories of that day. It’s horribly hard to process. But we need to be sure we never get comfortable pushing it aside, for there were many lives lost and the damage done to our country is long lasting.

When we forget the pain, we are less motivated to remain united and strong against those who would repeat such an event. I hope we never see such a thing.

Never forget. Be grateful for each day, each breath of the day. Make sure the people you love know it, before it comes to that frantic phone call with moments left. God forbid that come to be.

And pray we never see this kind of terror again.

For Laynee: A little something

2011-09-07T23:50:00.001-05:00

As I said the other day, I feel helpless when it comes to what to do or say for those who hurt for their pretty girl today. Thankfully, I pray for them a lot, and that’s the best thing I can do.

But tonight, after a day of plumbing issues ending in big money leaving my bank account and a variety of other concerns that seemed *purposeful* in attempting to steal my focus on what this day means to me, I felt that I wanted to bring it back around, in the quiet before bed, to remember this little beauty and celebrate some of her favorite things.

The best way I am able to do that is through playing with my digiscrap kits and such, frivolous as it may seem. So I spent a little time tonight putting together a little siggy for Miss Jalayne Grace, the hee-hee loving princess.

She was such a pretty little bug, full of energy and loved by SO many.

Never forgotten. Always missed. You are forever loved, little Laynee.

Silent but with much to say

2011-09-05T22:38:00.001-05:00

It’s been a very tiring 5 days for me. I’ve worked far too much for my liking. I’ve been more rushed and tense than I’d prefer. I have had some wonderful moments within those days, don’t misunderstand. But I’m exhausted.

And tonight, after my girls collapsed into their beds, having been transferred in from their car seats where they fell asleep, I had the opportunity to go to bed. Early. Before 9 pm. But I couldn’t.

I feel like I need to communicate something intangible. I have this urge to say something. And yet all words are empty and unimportant. I’ve been sitting here with my laptop open, on, and my hands on the keyboard for almost an hour. And yet the words just won’t form any cohesive thoughts worth sharing.

It’s not about my busy weekend. It’s not about my world at all. I’m left sitting here in bed, uncomfortable. Wanting to speak words of comfort and having none. I so desperately want to share just the right note of encouragement, or the perfectly fitting verse of scripture. But it still just feels like me talking.

For today, my dear friends, more like family really, must go to bed realizing that two years have passed since their bubbly, silly, pretty, energetic little girl hugged them tightly. As my girls played in the pool today, laughing and splashing, I had to look away a few times for the poignant realization that water just like that was the cause of devastation that day. It literally brings me to tears to consider what they were experiencing at the end of their Labor Day in 2009. And tears don’t begin to communicate the pain, I’m quite sure.

It seems that even though I feel strongly drawn to express what is going through my mind, it somehow cheapens such a pivotal moment in so many lives. Like do I even have a right to be so affected by a moment that isn’t even mine directly? Who am I to even pretend I can be of any value in a time like this?

And yet I have been blessed by the beauty that has risen from such a horrific time. The Glory of God has been shown in a manner I didn’t even know could exist in times of this kind of tragedy. The faith that has remained without fail. The precious lives that are now part of mine due in part to a tragic loss. Priceless. But so costly still.

I adore this family, to the point that I fear they’ll find me a little annoying one of these days, if they haven’t already. But I would give it all back, every little blessing they’ve caused to come my way, just to return their Laynee Bug to them. In a split second, I’d recuse myself from the learning I’ve received and the encouragement they’ve been to me, if only she could now be there with them, snoozing in her bed with her family nearby.

But it doesn’t work that way. They know that all too well. And they have continued to live in a most beautiful example of trusting in His promises, while never pretending not to hurt. Never lessening the depth of the void that’s now left.

Tonight as I sit here rambling, wishing I had something truly helpful to say or do or write or scream, I can only say that I hurt for them, with them, though I may never know the extent of the pain. I hate that they have to hurt at all. But I know without a doubt that they live in the hands of the One who knows better than any other how it feels to lose a beloved. And they trust Him. Implicitly.

Labor Day will never be the same, September 7th will always be marked. For them, indelibly. In our home, these days will never pass without purposeful remembrances of a delightful little girl we only had the privilege of knowing in pictures and through the stories told by those who love her, and prayers for the continued comfort for the 7 hearts closest to her.

I may not have the right words at all. I pray only that God will take my heart and intentions and share that love in his perfect way.

Bringing cuteness back.

2011-09-03T23:28:00.001-05:00

There are a lot of things that I want to remember someday down the line, when my girls are too big for baths, too cool for cuddles, and too chic to chat with me about everything that’s in their little heads.

One of those simple things is the fun they have in the bath together. They are all about whatever they can do together. Alike. With each other. And I don’t want to forget that.

I don’t want them to forget it either. So pictures like this will definitely be brought out to remind them of their camaraderie when they are sick to death of each other in about 8 years. I can’t wait to see their eyes roll when these pictures show up at just the right moment.

Denmark. Disturbing. Derogatory.

2011-09-02T22:58:00.003-05:00

Denmark has stated openly that their goal is to be a society without Down syndrome.
Here's the whole article if you are so brave.

That statement in itself is disturbing.

My friend, Michelle, at Big Blueberry Eyes (one of the first blogs I found and followed after Braska was born) posted some comments about this choice, and I'll admit, it's a very difficult post to read. It makes me mad. It makes me a little ill if I think about it too long.

But I feel like it's important to realize to what extent the philosophies of disabilities in some countries have twisted. So check it out, knowing it won't give you warm fuzzies, but with the intent of knowing where "the others" stand, and how far they are willing to go.

Then tell someone... be sure that those who might be around you and think like this out of ignorance have the opportunity to learn the truth about what life with DS means.
And My Heart Cries

Lord bless our efforts to share with the world the value that all life has, especially now that of our precious "extra" wonderful kids.

Pseudo bed next to bed

2011-09-01T23:44:00.001-05:00

KiKi has a bed. It is about 3 inches from this chair. And yet she often will hop between them from night to night. Sometimes she changes locations during the night.

Tonight I got home from work and then cleaned the carpet in a couple of rooms. It's a very small house, and that is a loud machine. They were in bed already, but awake, and I figured the girls would quickly just fall asleep with the added, though loud, noise. (They have a loud fan in their room already. I have white noise issues. Must have for sleep.)

I went to check on the girls and they were out. Braska in her bed where I left her and KiKi in the chair with Purple, her pillow pet. I suppose sleeping is better than awake, even if its not in the bed.

Do your kids sleep in places other than their beds at night??

One week is in the books

2011-08-31T23:32:00.002-05:00

One week ago yesterday, Braska had her last tube feeding. I thought we were going to have to change that yesterday, as she really wasn’t in the mood to be drinking. I’ve said before, and it’s not overstated, that to make her mouth, tongue, throat, and all the incorporated muscles of lesser known names work together and allow for her to take fluid in and swallow it properly is a lot of work for her. It does not come naturally. It is not a reflex. She does not “just get it” now, she is working hard to get it. Very hard.

At times, when she’s holding a mouthful of milk, just sitting there, waiting for me to take the sippy cup away, her eyes will go from side to side, her neck twitches and moves, her jaw slides from side to side or clenches a bit. It’s all like a bit of quiet chaos as she tries to organize everything in order to get that swallow done right, without choking, and allow more drink to come in. It’s a very slow process.

Don’t think that she’s just up and guzzling down her fluids. To get about 4 ounces in her takes about 10 to 15 minutes of constant work. She gets a break and then it is time to try again, with either more fluids or something to eat. We have to do food/drink in staggered amounts because she doesn’t hold very much at one time.

Because of that, the non-use of the tube has definitely created more work for me, and for M when he’s in the feeding role. Much more time is devoted to getting her food/drink in orally than when we can rely on the tube. But we are sticking with it, and she hasn’t fought us too hard yet. I think we can get there, even if it is slowly.

We’re already in to this process almost 5 years. Now we’ve got one week toward the next chapter… I’ll take that.

Happy Birthday, Dad!

2011-08-30T15:55:00.001-05:00

Hot Rod. Padre. Pa Beagle.

Dad is what I call him most often.
And today he qualifies for the senior discount at the YMCA.
Congratulations!

So here’s a little look back at when it was just us, and Mom, of course. But someone had to take the pictures. From October 73 to Easter 75, when he was a preacher boy in his mid-twenties. Good times.

And from June 2011… with Mom, Julia, and the girls.

Happy birthday, Dad. Hope you have a super great day! And yes, you may link this on FB if you’d like to share your young handsome self with your friends.

(Happy birthday to Marci, too. Wherever you are. We still miss you.)

Within reach

2011-08-29T22:38:00.001-05:00

The overstuffed recliner is between their little beds. When I sit there, I can reach each of them as they lay in their beds, holding one of each of their little hands as we say their prayers each night. The room is only 9 feet wide.

Tonight we prayed for their sweet dreams, restful sleep, thanking God for a good day, all four of us healthy. We thanked God for our friends and that our sweet friend Jamee had a good day after a few tough ones. We prayed for my friend Jennifer far away. We asked for extra doses of comfort and peace of heart for our dear, precious friends who will walk painfully through the next 9 days, though all their days are harder without their prettiest little one. We asked for lots of extra angels to be sent to those little ones who are mistreated or alone in places without mommies and daddies to love them. We never forget these precious ones. We prayed for the “tummy babies” whose mommies are scared of what the doctors have told them and for those mommies to be held and loved and supported and given wise counsel.

We don’t always use those kinds of words. We say it as the girls understand and join in. They remember people we’ve talked about during the day, or friends that we’ve been praying for lately. They remind me even mid-prayer of people to remember and mention.

Tonight, Braska, who had gone without a nap today and was very very tired, fell asleep holding my hand during the prayers. Kinlee was on the other side holding my right hand, moving my thumb along the back of her hand when I would pause from the gentle motion that she likes so much.

I sat there for a while longer than I normally do, listening to Kinlee talk to herself, sing a few little songs, and watching Braska sleep. My girls are within reach. I do not take for granted that they are right here with me, well cared for, comfortable in their home and in their parents’ love. It is nothing to take lightly. Every moment is a blessing.

And I thought to myself, how thankful I am, that for those tonight who desperately wish their precious ones, either young or old, were within reach, there is a God who is ALWAYS within reach. He is closer than the air around us. Available at your quietest whisper or loudest cry. Just reach out and hold His hand.

New bedtime please

2011-08-27T23:15:00.001-05:00

I used to be in bed by 10 or 10:30 pm regularly. And I was still feeling like it was later than it should have been.

Now it’s been midnight or later for a few weeks, and it’s just wearing me out. So why can I know that, think about it often, and still it’s not changing? That kind of thing frustrates me.

So instead of ranting more about it, I’ll go to bed. There’s a novel idea.

Just for kicks… when do YOU usually go to bed?

Love the gulp

2011-08-27T00:06:00.001-05:00

If you’re one of the few who check in here but not over on Braska’s blog, be sure to pop over there and read the last few posts about our big, exciting changes. She’s rocking a cup. Sporting a gulp. And I’m really proud of her.

This girl…

2011-08-26T00:15:00.001-05:00

This girl is amazing.

This girl is tolerating a very different way of doing things and she’s smiling through it. (Most of the time…)

This girl has to work harder at taking a drink of milk than you or I do during a one-hour workout.

But…This girl is doing it. And well.

This girl adores her big sister.

This girl can do just about everything better and faster than her big sister.

But this girl cheers her big sister on consistently, celebrating every little thing like it’s a major event.

These little girls make me smile.

These little girls make me crazy sometimes.

These little girls frustrate me to no end on some days.

But these little girls are blessings. Just as they are.

Lord, give me the wisdom to raise these little girls in the way you know is best.

My little muffins. Both of them.

2011-08-24T15:48:00.001-05:00

I referenced the tiny-ness of Braska in
this post (And if you haven’t seen it, you MUST! Big news in our world!!) So I decided to look back and see just how my girls measure up. The Normie and the Downsie, not in comparison to each other, though that’s often fun, but according to the “official” growth charts.

(ETA: In case you’re new…Yes, we affectionately refer to the girls in that way, as stated above. Yes, we know it might not be everyone’s preference. They are derived of love and pride in both of them, combined with the dry wit that lives in our house, and originating from self-advocates with DS who are proud to own the “Downsie” term for themselves and their close friends.)

Braska was 7 lb 0 oz at birth.
At 1 year, she was 15 lbs.
At 2 years, she was 19 lbs.
At 3 years she was 22 lbs.
At 4 years, she was 24 lbs.
As of today, at 3 months shy of 5, she is 25 lbs 10 oz and 36.75 inches tall. (That weight is also a BIG deal!)

That ranks her far from even hitting the “typical” chart for weight. 5th percentile would be about 33 lbs. 50th percentile would be 40 lbs. Her height also falls far below the “typical” chart. 5th percentile would be 39.5 inches, 50th percentile would be about 42.5 inches.

On the DS chart, Braska currently ranks right at the 8th percentile for weight and at 25th percentile for height. She’s small by pretty much any standards!

Kinlee was 7 lb 6 oz at birth.
At 1 year, she was just over 18 lbs. She hit 20 lbs about 16 months, as I remember.
At 2 years, she was about 23 lbs.
As of today, at just over 2 1/2, she is 25 lbs 6 oz, about 35.5 inches tall.

That ranks her at about 10th percentile for weight and about 20th for height. And they don’t come any healthier than this chick.

So for all the discussions I’ve had lately with people worrying over their kids’ weight gain or the “all important” growth chart rankings (they are NOT that important, in my opinion), celebrate the health and progress of your kiddo. And give them a break!

Great things come in small packages!!!

My pretty princess flower girl

2011-08-22T22:26:00.004-05:00

SO much happening lately. A weekend of family reunion for my side of the family, followed by the next weekend of in-laws a-plenty for M's brother's wedding. That was this past Saturday. Tons of pics and stories and I'm sure I'll forget something I want to remember. I'm glad it all went pretty well, and I'm glad it's over. I'm worn out, and I'm ready for some simple family-of-four time at home. Not that I don't love our families, because we are pretty blessed as that goes. But wow, that was alot of time in a short little span. So now it's time to decompress!

I'm working on getting all the photos/videos uploaded to share with all you lovely family members. Thanks for being patient. They'll be ready soon. In the meantime, here's some of the cutest moments of the day Saturday in video form. (If you have trouble seeing the video, refresh the blog page, and if it still won't work for you, let me know, please! Email is in the margin over to the right.)

Make a video - it's fun, easy and free!
www.onetruemedia.com

(What you can't really hear well at the beginning is Kinlee saying loudly and proudly... "We're doing it! We're doing it!" And the crowd loved it. It'll be a classic family story for years to come I'm sure.)

Discipline. Down syndrome or not.

2011-08-15T16:10:00.001-05:00

One of the forums I frequent (or in-frequent?) is Life’s Journey with Down Syndrome. It’s a small, private board, very close knit, and many of us have met personally after getting to know each other online. The group there talks about many things, and discussions are always interesting but respectful, which I appreciate a great deal. (If you’re interested in joining, fill out the registration, or drop me a line and I can put in a good word for ya with the “powers that be.” )

I don’t get to go over there and join the discussions nearly as often as I’d like, but today I popped in. There was a thread about one of the topics I’m most passionate about… discipline/proper behavior, etc. I won’t share the others’ comments since it is private, but since I wrote out a bit about my thoughts, I thought I’d share them here too so see if there was more discussion or thoughts that YOU might want to throw in…

(Someone had asked about if the members disciplined their children with DS…the same as their other kids, differently, less than, or not at all. And discussion ensued about how each of us feels about the discipline/behavior topic. Then a comment was made about how one member feels strongly about behavior and will at times avoid spending time with friends’ families/kids who are not well behaved or exhibit unacceptable behaviors.)

Part of my (edited for privacy) response is below… feel free to comment, politely, of course.

I could go on for days about this topic! What *** said above is so true for me... I'm famous, for better or for worse, for avoiding kids that don't act in a way that I find acceptable. I have several friends who I would spend alot more time with but their kids either just really annoy me (sorry, being brutally honest) or are flat-out inappropriate to the extent that I don't want my girls to see that behavior. And often, it's the interaction between parent and child that bothers me more than just the behavior of the child. The unwillingness of a parent to be firm and respond beyond a half-hearted "Oh Billy, I wish you wouldn't do that," is really hard to watch. I always think, "If you WISH they wouldn't do it, make sure they don't. BE the parent!"

I'm a stickler for behavior. If I've said no, I mean it and it will be enforced pronto if it's not obeyed. Period. Do I mess up and sometimes get tired? Of course. But thankfully, my husband and I are on the same page about most of this stuff [so pleased!] so he is always consistent with them as well. There are acceptable and unacceptable behaviors for both my girls, and unacceptable behaviors will meet a quick consequence every time.

Granted, some things are dealt with differently for each of them, for both personality and developmental reasons. But the rules are the same. Braska is very easy. She has gained a bit more of an attitude lately, but it's still generally easily addressed, and though she might pout a bit, she minds pretty well. Kinlee is VERY strong willed and too smart and manipulative for her age, but she is expected to behave in a proper manner, regardless of the fact that she's "only 2".

This goes as far as to speak politely when spoken to, to say please and thank you, no yelling in the house, no pushing, hitting, etc. The girls will repeat the mantra when I ask them... "When I give you an instruction, what do you do?" "Listen and obey," they chime. [Some people] think we're too strict and that we're not allowing them to have all the fun they apparently should be having, but we make sure they get plenty of "fun" and plenty of playtime to be silly girls, with the correlation to appropriateness of time and environment.

Though Kinlee can be very tough, she isn't [quite as] brazen anymore. We have worked hard to teach what is acceptable and stick with it. If a toy is treated in a manner that isn't appropriate, thrown, jumped on, etc, a firm verbal instruction might be given (Don't throw the block.) but if it is not immediately heeded, the physical will be there in seconds. The toy is removed, the child is removed from the area, the instruction is repeated clearly, at the very least. It doesn't have to be a big scene, loud or emotional, just clear information to the child that I mean what I say. What works for one might not work for all, but consistency works better than it's alternative every time.

Suffice it to say that behavior, proper and respectful behavior, is hugely important to us. I'd much rather be thought of as too strict and have well behaved kids who can mind themselves in most any adult or child situation than be seen as the easy-going mom and have kids that others are avoiding. It's all a balance, for sure, and I pray every day that I'm finding the right spot.

What’s your feeling about discipline and special needs/Down syndrome? Or is the disability a non-issue?

New friends nearby

2011-08-07T23:13:00.001-05:00

A week ago, on Sunday, after working the afternoon shift, I met up with a new friend. I had a rough and weird day at work, and with the crazy heat that has been hanging around here, I was not at my best social self. The girls also showed some of their less attractive features here and there. But regardless, it was a nice visit with some very lovely new friends. I’m so looking forward to the next time.

This has been the strangest week, really very odd. I’ve worked more than I’d prefer in the last few days. Since I’m worn out and clearly not having any great wit tonight, I’ll refrain from giving my version of last Sunday evening as I’d thought I’d do.

When the words of another say what should be said even more eloquently, let them alone. Right?

Please visit Trial Run for the great post that shares of our playdate. And the pictures… you will not be disappointed with the cuteness quotient! It was hot, but there was water.

Lowered expectations

2011-07-26T23:33:00.000-05:00

I have been avoiding posting, I think. I didn’t really consciously think of it that way, but it’s probably true. Because really…how do I catch up with all I’ve missed in life lately?

Don’t worry! Nothing’s going wrong. There’s not any new horrible news. We’re chugging right along, just really busy.

It’s just that the girls are at the stages where there’s a lot going on. I’d like to discuss so many things that they are experiencing, that I am experiencing with them, and there are many questions I’d love to ask of all the wisdom that is (or used to be?) out there in my lovely readers. I kind of fear that everyone’s moved on, and really, I don’t blame ya!

So I hope to have the time and motivation soon to dig back into the past few months and talk about some things that have been happening around our house. In the meantime, there are a few little things that I can think of now… gotta love a bullet list, right? I always like ‘em, anyway, when YOU guys do ‘em!

The work re-entry is going ok. There are pros and cons. For the most part, I really like the actual job, working with the members, interacting and building relationships. I’m finding it hard to be “just” an employee versus being the employer/boss as I’m used to in the recent employment past. (Just ask my supervisors… it’s a challenge for all of us.) But I’m learning… and people seem to like me. That’s always nice.
Kinlee is celebrating 8 days of being a toilet-user full time. She’s been a part-time user (mostly due to my lack of consistency) for many months, but last Monday, I offered her the option of panties mid morning, on a whim, and she went for it. She had an accident that day, but has been golden ever since. As of the last few days, all prompts have been withheld, and she’s doing great telling us when she needs to go. Even outside playing and splashing in the pool. I’m VERY glad, and so proud of her!!
Today I spent almost 5.5 hours cleaning house. Like solid time, manual labor. Not on-and-off piddling around. 3 hours were this morning at another house… a little side job picked up with a personal connection. Then when I got home and got the girls to nap, I got the bug to tackle the kitchen at my own house. It’s way more stressful for me to do my own house, because I have tons of stuff that has no home. I don’t think I have ever adjusted to having a house so much smaller than what I had before. And I need to get some of my organizational skills back. Badly. BUT—I got in the groove, thanks to the “worker gene” that my husband says I got from my mother, and I worked for a solid 2.5 hours on the kitchen, top to bottom, sorting, storing, digging through the piles on the table. In the end, I have a kitchen that is clean. M was pleased to find out he didn’t “need to wear socks” in the kitchen. Ouch. Harsh much? I suppose the random crunched toasty oats or leaves aren’t a pleasant texture to his soft and sweet feet. I will feel it in the morning, no doubt, the bending, scrubbing, reaching. But it was really nice to get so much done and have the kitchen…if just for an evening…in presentable shape.*
Braska’s having a strange new phase…defiance, stubbornness, and other less than ideal little quirks. This is one of those things I’d love to bounce off of some of you… but another time. On the good news side, she will have the same teacher this coming year as last school year. And that is VERY good! We’re really hoping and praying for more repeat cast members on her team!
*Presentable shape… this is where the “lowered expectations” come in. My tendency toward dysfunctional perfectionism shows up in my choosing NOT to do something that I feel will not live up to my high standards in the end result. I don’t like to do things half-way. So if I can’t do something the way I really want to do it, I generally just don’t. I didn’t say I was proud, but this is part of how I seem to be wired. That translates into my kitchen. When I have a pile of this and that, stuff that I just plain don’t know what to do with but that does actually need to be kept, I tend to just give up on the kitchen. I know that I can’t make it the “clean” that I want it to be, no matter what, so I opt not to try. My counselor has really encouraged me to try to accept a new standard—though it can be temporary, to match this temporary chaotic season of life—that will allow me to celebrate victories where I would normally lament half-completed failures. We decided that if I can get a couple of particular spans of countertop cleared and clean, then I can count it as a “clean” kitchen. When I have room to work, on the long section, about 3.5 feet of clear space, I feel like I’ve accomplished a good thing. There’s still a pile of who knows what at the end by the fridge, and the corner opposite still houses more things on the countertop than I’d like. But they are things I need regularly and there’s nowhere else to store them. So that’s the “lowered expectations” element… it’s not all bad. I’ve found it to be really helpful. I’m focusing on the fact that right now my job is my girls primarily, and it’s very time consuming at this stage. There will be times soon when I have more time to organize and clean a kitchen. For now, this will do. The dirt is minimal, the clutter is mostly manageable. Tonight, the addition of truly clean floors, clear table, and much less clutter makes it that much sweeter.

That’s more than enough for now. It’s very late and tomorrow is another day. I’d love to hear your thoughts, what’s happening, that you’re there!

Kinlee-isms: #5 How bout that?

2011-07-07T12:06:00.001-05:00

Me: Hey girls, would you like to go downstairs with me to help with laundry?

KiKi: YOU go do laundry and WE will play with toys downstairs. How bout that?

KiKi: Mommy, I need fries. I need ketchup dip and I need french fries. Get it!

Me: You can ask nicely if you'd like to have fries.

KiKi: Can you get my fries first? How bout that?

Daddy’s girls

2011-06-19T19:02:00.000-05:00

It started almost 38 years ago…

Though I don’t remember too much about those days, I was the one and only back then, and I was Daddy’s girl.

Now, I get to enjoy the new perspective, of watching my girls be Daddy’s girls…

And both perspectives are pretty good ones, I say.

Thank you, Dad, for teaching us right from wrong and how to enjoy a great ball game and a fun car.

And thanks, M, for adoring our little poonchins, teaching them right from wrong, how to appreciate Bears football, and letting them climb (with love) all over their daddy pop.

And let me just add… both these pictures above are of little girls heading to church with their daddies. It’s no accident that the legacy continues. It takes a firm decision and determination to do what’s right. And I don’t take that for granted.

M asked for Strong Fathers, Strong Daughters by Meg Meeker, MD for Father’s Day. And he received it. With much appreciation that he takes his job seriously enough to want to do it the best he can. And yes, I sneaked a peek at it before I let KiKi wrap it up… and it’s good. Get it and give it, or get it and read it, depending on your position in the parental pairing. Whether your daughters are 6 months old or 25 years old. Great info for all, and it’s never “too late.”

(Bringing Up Girls by James Dobson is also another good one. I have it in audio book form. And I feel sure it’s one I’ll listen through just about yearly. I recommend it for moms AND dads.)

Daddies and daughters…a special thing. The relationship that can make or break a girl.

Return of the giggles

2011-06-16T09:19:00.001-05:00

The girls are home. I went and met up with my parents and youngest sis yesterday at the halfway point of our liking (Mexican restaurant, of course!) to pick them up. I had lovely company along for the ride, as well, and that always makes a little road trip more enjoyable.

As expected, KiKi flipped her little lid and wouldn’t have anything to do with me for a while after I arrived. She clung to Grammy and wouldn’t look at me.

The pic here is from right before we left, an hour into her warming up process, which is about how long it often takes.

This is common with her… whoever has just arrived home is feared, completely avoided, and glared at, if they are so lucky as to get her eyes at all their direction. I’m not sure how her little brain works, but she’s at least consistent.

When M comes in from work, Kinlee will run the other direction, usually straight to me and plead for me to hold her and not let Daddy get her. The same response happens when I get home from work, if she’s still awake. It doesn’t matter if we’ve just run to the store or been gone for a few days. When her grandmas arrive, she’s generally the same with them, although they are her favorite thing just a few minutes later. I’m not sure where it all comes from. She’s not a fan of whoever is just entering the picture.

She does warm up, sometimes more quickly than others, but it’s a pretty interesting little habit she has. We’ve become accustomed to it, and we generally will alert others in the situation to the way it will play out so they don’t get offended or think they’ve done something bad. Just a KiKi thing…

The girls had a great time. They’ve been telling all about the horses they got to pet and the kitties they saw and the BIG trampoline that they got to jump on. Last night we played a little longer on the floor in the living room, letting bedtime wait, since they were just happy to be home and full of the giggles that we missed a little while they were gone.

While they were gone, I got plenty of relaxing done, some reading, and some much overdue cleaning in the house. I’m feeling a little better overall. I’m still fighting the same “summer cold” as everyone seems to want to call it, and I’m just about to poke a little hole in my ear drum to get the fluid out that just will NOT leave. The constant coughing, drainage, and throat clearing is annoying—to me and anyone around me. After 3 weeks, this is getting a little ridiculous!

For all the drama that KiKi can be, she can also be pretty sweet. She was eating some dinner last night and said, “I’m sorry, Mommy.” I told her that was nice to say she was sorry, but that I didn’t know that she needed to. I asked her why she said it. She said, “I’m sorry I missed you and Daddy.” Then she told M the same a few times, and repeated it to me again before bed. I think the idea was that she was glad to be home. And for that, I’m thankful.

Here’s hoping our next few weeks will be much more pleasant than the last few and we can spend more time enjoying the little giggly girls who live in our house.

A little trip for little girls

2011-06-12T16:53:00.001-05:00

The girls went to Grammy’s house for a few days. They left yesterday, when Mom came through town on an airport-drop-off mission. We’ll meet on Wednesday to pick them up. They were excited to go, and that’s nice. “We’re little girls going on a little trip, Mom!” They will be enjoying the BIG trampoline, puppies, and lots of good time with their aunties, Grammy, and Papa.

So far, M and I have enjoyed a dinner just the two of us, and I’ve worked a lot. But it’s nice to have some time when wrangling the tots is not on my list of responsibilities. Just a little while…

Look back and laugh: Going sterile

2011-06-08T19:44:00.001-05:00

Back by popular demand, and because this topic has come up on a DS forum I like… here’s my guest post done for M’s blog, which is no longer in publication. It’s about time we all have a good giggle, and M doesn’t mind if it’s at his expense, just this once. For real… I asked.

From 9/2009~

I don't remember much about "The Great Snip of 2009". Here is what I do remember: They stuck a needle in my arm and told me they were giving me Valium, then I woke up in a stranger's driveway and immediately went unconscious. The following is RK's interpretation of that event.

______________________________________________________

After about 30 minutes, the nurse came to the door and said, “RK?” She looked around the waiting room and I motioned that it was me. She asked if I could come back. I was feeding Kinlee, so it took me a few seconds to gather up the bottle, the diaper bag, my purse, etc. and get to the door. As we walked back, the nurse told me they had given him Valium just before they got started, and he was still “pretty out of it.” She said I needed to help him get dressed. I was thinking that I didn’t know about the Valium or I’d have told him he is very sensitive to sedatives. They left that part out of the post op consultation.

We walked through the door into the procedure room and there he was, lying on the exam table. He was more than “pretty out of it,” he was unconscious. Practically drooling while he snored very deeply. It wasn’t his most sexy moment, though the Cardinals shirt with athletic supporter is an interesting ensemble. And no, I didn’t take a picture of that particular part of the day.

I wasn’t sure what I was supposed to do with Kinlee while I attempted put his pants on while he slept. So the nurse held her while I went back downstairs to get the stroller from the van. After I returned, having called Julie (Braska was at her house playing with her buddy Jack) to tell the already funny story and how it was going to make us later getting Braska, I strapped Kinlee in the stroller and set out to dress my unusually floppy husband. It should be noted that the nurse did not assist me at all. Now, she HAD put the jock on, thank goodness, so that’s good, but I would have liked some help.

Luckily M had decided to bring his flannel PJ pants (affectionately referred to as “comfy pants” at our house) because I can’t imagine attempting to put jeans on someone in that condition. The nurse had gone to get a wheelchair while I was working on the trouser task. “We’ve never had this happen before,” she kept saying. “We’ve never had to use a wheelchair before.” When I lifted up a leg to start the pants-on process, M stirred a little. I started to fill him in on the situation, even though it was quite clear that he wasn’t grasping it. But at some point during my description, he said, “Ah dun ned ah weecha. Ahken wahk jes fahn.” Ok, maybe trying to write the slurring won’t work, but imagine the drunkest person you’ve ever seen in a bad B movie and double it. He was WAY out of it. He clearly could NOT “walk just fine.”

He almost fell off the table at least 3 times while I was dressing him, mostly when I was trying to lift his rear end up to get the waist up where it needed to be. There was a bit of lift-n-drop, lift-n-drop going on, yet he slept, only rousing once to say, “Is it done yet?” He ended up in this position.

I told him it was over and we were going to figure out how to get him to the van. Again he said, “I don’t need a wheelchair.” Then he added, “Just sit me up.” I told him if he could sit up on his own, then we wouldn’t use the wheelchair. He tried, if you count a feeble grunt with no actual movement to accompany it. “Come on, just sit me up.” I didn’t comply, as it became obvious he was getting ready to be in a puddle on the floor. So I tried to shove him back up on the table more securely.

When the nurse returned with the wheelchair, she said, “He just needs to stand up, then we can get behind him.” I assured her he would not be standing up. She kept saying, “Muncher, Muncher! You need to wake up. It’s time to wake up. You can’t go through the waiting room like this.” Apparently there were a whole day of vasectomy patients behind us, waiting in the room that we’d have to pass through to exit. She didn’t want this picture in their heads before they got to the moment of truth of their own. “Muncher, Muncher! Please wake up just a little. I need you to wake up!”

M was not responding to all this encouragement from the nurse. He was snoring right through it all. But as we scooted his rear around to attempt to get him off the table into the wheelchair, he did manage to say, “I don’t need this wheelchair. I can walk to the van.” I ignored him. I ended up lifting him up completely, with my shoulder in his chest and him slumped over my back to pivot him into the wheelchair. The nurse helped by holding the wheelchair still. I probably shouldn’t have let him plop into the wheelchair quite so roughly, but there wasn’t much I could do about it at that point. I just about ended up in his lap from the momentum of him falling down into it.

The nurse gathered his feet up and straightened his head, like she thought it would stay upright, and then headed out of the room. I grabbed my things and pushed the stroller out behind her. She kept urging him, “Muncher, Muncher! PLEASE sit up straight when we go through the waiting room. Please wake up! You’re making us look bad.” I just followed and smiled at the men who looked nervously at our little parade as we passed through the waiting area and out the front door.

We went down the elevator, M sleeping soundly, Kinlee looking at him like he was green and had 4 noses or something, the nurse still saying, “This never happens. I don’t know why he won’t wake up. We’ve never had this happen before.” I just let her stew a little and didn’t say anything. When we got to the front door of the building, she waited while I went to get the van. I put Kinlee in her seat and brought the van up to the front door. The nurse wheeled him out to the passenger side door, and I told her I wasn’t sure how we were going to get him up high enough to get into the seat. M managed to throw in his 2 cents by saying, “I can get in by myself. Where’s the door?” He was reaching for something to hold onto, yet his hand was only about 3 inches off the arm of the wheelchair, missing it’s mark by over a foot. As much as this was funny to watch, I was kind of wishing he could actually give us some assistance. The nurse pushed him out of the chair from behind while I held his legs stiff so we could turn him with his rear to the van. Then I grabbed him around his thighs and lifted him, again quite roughly, into the van seat. I had thought to recline it so that he could flop back, so we just shoved his feet in enough to shut the door, I buckled him in, and the nurse said, “Good luck.” It wasn’t a comfortable position, but it worked.

I called M’s parents to see if Dad was available, because it was very clear that I was not going to be able to get him out of the car, up the steps to the house, and back to the couch or the bed. I figured since he was in the van, we could just head south 45 minutes and let them help me get him out and recover there for the day. But first we went by Braska’s school to cancel a therapy appointment we had in an hour, and we stopped at QT to get frozen cappuccinos (a fave of me and Julie) to share with her since she’d kept Braska for us. When we got to Julie’s, I left M in the van, in the shade of the driveway, and put the windows down. I brought out a blanket to prop his head up since it didn’t look comfy the way it was. I went in with Kinlee and decided we’d give M a bit to come around a little, maybe avoiding a trip south. Julie and I chatted for a while, about 45 minutes, as I watched him out the front window to make sure he wasn’t stirring around or anything. He didn’t move a muscle.

I loaded up the girls, called Mom to say we were coming, and stopped by home to grab some things. By the time we were in our driveway about 5 minutes later, M was a bit more conscious, asking where we were, saying again that he was fine to walk into the house by himself. He was holding his head up a bit more. But he still couldn’t move his limbs well, and I didn’t want to chance him ending up on the garage floor for the remainder of his recuperation.

We headed down to his parents, and by the time we got there 45 minutes later, almost 2 hours after leaving the clinic, he was more lucid. Dad came out to help him in to the house, but he was able to bear most of his weight on his own.

There were hours more of sleeping, bags of frozen vegetables that his mom deemed “contaminated” and lots of crude jokes at his expense.

Footnote: 6/8/2011

This story still makes me chuckle almost 2 years later. From what I hear—from those who have this on their Top 5 fave stories ever—it’s better if you read it out loud to family. So feel free… let us know if anyone harms themselves falling out of a chair. Not that we’re legally responsible for such things, mind you, but we’d love to know about it.

Grumpy about being sick. Sick of being grumpy.

2011-06-07T09:38:00.002-05:00

This is the face I get from KiKi MOST of the time lately. --->

And no, it’s not fun when it’s as common as it’s become. I don’t know if it’s just a 2-year-old phase or if there’s something wrong physically or if she is just struggling more with our schedule adjustments and my working most nights/weekends.

But—all cute kid, “terrible twos,” and drama queen comments aside—it is truly wearing on me. Now that I think about it, she’s probably getting that face from me a lot, too. Which came first….chicken or egg…

I’ve been sick now for 6 days. Braska is still sick, day 7. Though all of us are some better, Braska and I are still coughing up all kinds of grossness, having much less energy than usual.

I know that for my part, I feel like I’m going to truly lose my mind.

It’s not just the sick, though that clearly hinders my ability to take things on with my normal resolve and determination, but the combination of factors that “just happen” to be in place right now is really wearing on me.

Work is frustrating, mostly in the fact that I have to HAVE the job in the first place. I feel like it has upset the apple cart of my life and routine. Though I have always been lacking in some areas of life, I am not successful at any area of life right now, and that is SO SO hard for me to deal with. I’m a firm believer in the truth that all things will be brought together for good, and I know I can’t see the big picture, but right now, it’s a really hard thing for me to not just throw in the towel and refuse to even get out of bed.

M and I are not great at communicating with each other, to make a gross understatement, and with us meeting in the driveway as he gets home and I leave for work… it’s not really helping create closeness or security. That, in itself, rocks my foundations.

Braska’s teeth grinding is at an all time high over about the last 2 weeks. I don’t talk about this a lot, but it’s something that really drives me nuts. She grinds constantly, literally 90% of her waking hours lately. At least. And it’s loud, just ask family and friends who have experienced it. (“Holy cow! Is that her TEETH making that sound?!?” “Doesn’t she ever stop?”)

Kinlee’s constant whining, crying, and refusing to cooperate with any part of our daily schedule is just pushing me over the edge. No matter what she is offered, she doesn’t want it. When she asks for something, I get it for her, then she collapses into tears and refuses to take/eat it. Right now it’s 9:02 am and she’s been up for 2 hours. She has completely refused to eat or drink anything, but keeps asking for breakfast. Any option is refused though. Just now I had to blow my nose, she is on the other side of the room and immediately yelled, “Stop blowing your nose! You can’t blow your nose!” There’s no rhyme or reason to it, but after hours on end, it’s grating. In a few seconds, she will be giggling about something, and then a millisecond after that, in a pile on the floor crying because her sister walked by her too quickly. It’s not that there are no pleasant times, but it is impossible to know how long it will last or when the next one might show up. Exhausting.

Another little example… now she’s singing, “Jesus loves me.” It’s adorable. But I looked up at her to smile and nod, and she said, “You can’t say ‘Yeah!’ Don’t look at me!” I looked back down and she continued sweetly.

She doesn’t want to get dressed, she doesn’t want to get in the car, then she whines because we’re home and it’s time to get OUT of the car. She wants to go to the store, but then she freaks out when it’s time to go in. She doesn’t want to go to bed, she wants to read a book. But when we read a book, she doesn’t want Braska to watch. So we read the book alone, but then she’s mad because Braska is playing with something else. She wants to go to the Y but when we get there, she flips out and won’t go in without a fit.

Then there will be little moments of pure fun, sweet little super-smart 2-year-old fun. Conversations that crack me up and interactions that I’d love to have on video.

But they are suddenly far less rare than the drama, the whining. I realize I have nothing fair to compare this to since Braska’s about as agreeable as they come, but wow… I feel like I cannot do anything right for this child.

I always feel like I have to acknowledge, when I pause from the optimistic to be honestly open about struggles, that I know this isn’t life-threatening or earth shaking. But I can say in all truth that whatever these factors are that come together in the spheres I live in right now are making me feel completely out of control, and it’s making me really disgusted by the mom, wife, and person who is walking around in my skin these last few weeks. Such a lonely feeling…

Yesterday all three of us girls were in the recliner crying at the same time, Kinlee for who-knows-why, Braska because Kinlee was crying, and me because I couldn’t think straight and tears just came. I was praying outloud, thanking God for my girls but pleading with him to help me be a better mom to them right now, because I’m on my last nerve. What a strange mix.

So forgive me please for not being my usual “glass half full” self. There’s not really anything that anyone outside our home can do to help, and several have offered, which I appreciate. (Unless you suddenly want to sponsor a family for a few hundred dollars a month.) God is good, all the time. Even when I feel like this and question why I have been set down in this particular moment in time. We will survive and learn from all things, but I’m sure praying that there is a time of peace soon to come for a little reprieve. Feel free to join me in that prayer and any others you want to offer on our family’s behalf.

To end on an up note: There have been positive things happening lately, so as I have a chance, I’ll share those, too. Swimming lessons, DS conferences, encouraging friends. We are blessed. Good and bad circumstances notwithstanding.

Edited to add---We managed to get to Aldi for WAY overdue shopping without meltdown. Praise God!

Bless you, Mommy. Bless you.

2011-06-03T09:57:00.001-05:00

My girls are sick of my being sick. More so than they are tired of being sick themselves, I think. Kinlee says I sound funny and sometimes she laughs when I try to talk. Because nothing comes out. She says I’m a sad mommy.

They are so good and polite. Something that is very important to me, and we work on it diligently. When someone sneezes, they are both all about a good, hearty “Bless you!” Braska has also taken to blessing those who cough. And let’s just say I’ve been doing plenty of that lately. So she has been blessing me over and over. And it’s nice, I admit. But the poor thing is stopping what she’s doing to send me her little “bless you” so many times that I feel a little bad interrupting her so frequently.

So when I’m able, I have been going to the other room to do my hacking. But the little superstar that she is… she followed me in there, “Bless you, Mommy. Bless you.” Then she turned around, walked back to the living room, and resumed watching Word World.

And I had to smile. Because this mommy is surely blessed.

Distracted by Joplin

2011-05-28T23:22:00.002-05:00

If you have NOT heard news of Joplin’s devastation, I’m not sure how you’ve avoided it. It’s been news everywhere, I hear, but of course being here in the state has made it constantly covered and updated in our area.

When news came that they’d had a direct tornado hit on Sunday, I made a few contacts to people we know there or who have loved ones there. Though I’ve never lived in Joplin, we have quite a few connections, and several years ago I spent a good deal of time there.

My sister-in-law is from there, her family still living in the area. My sister went to college there for one year. My father’s employer is headquartered there. My uncle and cousins went to college there. I had friends in college who were from the area.

Yesterday, my parents and my youngest sister went to Joplin to serve. Help. Do something. My sister took some video as they drove through. Even after seeing all the photos and video through media sources, seeing it at eye level, block after block is overwhelming. I can’t imagine experiencing it first hand.

This week, I’ve been following a couple of stories… many of you may have been aware of these as well. They gained quite a bit of exposure via Facebook especially.

Will Norton was driving home from his own graduation from high school when he was literally taken from his father’s arms and swept through the sunroof of his vehicle and away into the chaos of the tornado.

(Photo courtesy of the Norton family.)

They had hoped to find him alive, but just last night news came that he’d been found, and unfortunately that he was not alive.

Skyular Logsdon was a 16-month-old who was with his mother when the tornado struck.

(Photo courtesy of Skyular’s family.)

He was also taken from his mother’s arms by the twister and was missing for days. I kept checking on the status of the search, but Wednesday he was identified in a morgue. His mother is only 18 and still in the hospital for her injuries. Heartbreaking.

Then, the story of a woman who heard of her father’s passing in the tornado and died of a heart attack from the stress of the news.

It’s overwhelming, and I’m a few hours away. I’ve not seen it with my own eyes in person, and I’m really bothered by all the destruction and the hundreds of sad stories. I’ve been praying for the families, the missing, for the strength of those who are working. I’ve been amazed by the outpouring of generosity in both time and gifts for the city’s residents from people near and far.

Then I got an email from my sister yesterday… with this story. Please take the time to read it. It is written by an ER physician who was in St. John’s when it was hit. (These are some stunning pictures of the inside of the hospital.) The way he shares what he saw is amazing. What a powerful essay about his experience.

(Photos from St. John’s/Mercy Health’s Flickr)

So I get up each morning, go throughout my day, complain about the little annoyances of my life in the moment, and then stop to realize that I better zip my lip. Stop my griping. Get over myself and the whining.

For I have life. I have a home. I have my children. I have my husband. My house is messy, but it’s all here. I can account for where everyone that I care about is at any given time. And I am grateful. I must continue to be grateful. Consciously grateful.

Please continue to remember the people of Joplin, those who are still missing, and those who have been left to pick up the millions of pieces.

Lesson learned: Ouch

2011-05-26T15:34:00.001-05:00

They look yummy. And they are. But these small little tidbits made for a simple farewell to a coworker cost me a thumb. Or use of it. At least for a while…

Lesson Learned: When using oven mitts to remove hot stoneware from the oven, put them ON. Don’t cheat by trying to just them flat. There are dangerous places for thumbs to sneak past the protection.

And in case you’re interested in learning a super fast and yummy cookie option…
Cake mix cookies, variety style.
1 white cake mix
1/2 cup oil
2 eggs
2 tsp vanilla
1 1/3 cup oats

Mix it all together by hand, then add in whatever you like. So far some of my favorites are to roll little balls in coconut or cinnamon/sugar, add chocolate chips, or leave plain and decorate with icing. I’m going to try them next with a bit more oats and raisins. Mmmmmm.

I make them small, bake them on a stone ungreased (if well used/”seasoned”), preheat the oven to 375 and bake for 10 minutes. Leave them on the stone for about 5 minutes, then move to wire rack.

Easy. De-lish.

That's H

2011-05-23T09:40:00.001-05:00

We are at the eye doctor's office and Braska's doing great. She got a good report, so I'm pleased. Of course, her favorite part was the TV that kept showing letters. She just stood there and announced them all to us. Good times.

One long day, almost over

2011-05-18T22:09:00.001-05:00

I'm exhausted. I am mentally tired.

But I am thankful.

Thankful for access to the best medical care.
Thankful for the freedom to spend time holding my girl.
Thankful that M was able to go with me to the hospital.
Thankful for excellent nurses and doctors who care.
Thankful for our families who helped SO much today.
Thankful for the many, many people who prayed for us today.

Braska is sleeping and we hope she has a good night. There were a few unpleasant moments this evening, but we are all doing ok. I'm so glad we are home and well. The rest will come. And I'll continue to be thankful. God is good. All the time. No matter what. Good times and bad. But I am thankful that today we end on a high note. My girls are safe and sleeping well. We are blessed.

2011-05-18T07:48:00.001-05:00

Letter time at the hospital. Love my letter beads!!

Eye surgery #1 tomorrow

2011-05-17T15:04:00.001-05:00

The call came this afternoon with our surgery time details. Eye muscle surgery, left eye, for strabismus, to indirectly improve the head tilt to the right shoulder.

Be at the hospital at 6:45am. Clear liquids after midnight. NPO from 4:30am.

No problem. I’m glad to get it out of the way first thing in the morning.

I also found out that a friend of Braska’s from church, Caleb, will be at Children’s tomorrow morning for some difficult testing and appointments. It’s nice to know that we’ll have friends in the building, them praying for us and us for them, while we’re both pulling for our kids to do well.

So when you get up in the morning, please be praying that all goes well and without complications. Updates will be done on Braska’s blog, for the most part.

Finally 37

2011-05-11T15:18:00.001-05:00

Today’s M’s birthday. He’s 37. Finally. The time from October, when I jump ahead in age for a few months, to May, when he catches up seems forever. He is relentless, let me tell ya.

This is currently one of my fave pictures… Daddy walking with the girls into church. Just what daddies should be doing, in my book. And he does it every week. This ranks high on my list, and I’m thankful.

I’m working tonight, so not much fun going to be had around here for the birthday boy other than Daddy duty all evening. But Friday evening we’ll do something more fun.

Welcome to 37, young pup.

Q & A: Ginkgo biloba and eye surgery

2011-05-09T10:05:00.003-05:00

Since there were a few questions, I’ll put them here and answer them openly in case anyone else was wondering… (Oh, and the sale is even BETTER now… if you’re still wanting to pick up some GB for your house. It’s not just for kids with DS, lots of adults use it for memory and sharpness. I keep thinking I should use it myself. We just recently started M on it, as it is said to help with dizziness/vertigo, which plagues him occasionally. And it seems to have helped. We'll see how it goes as we move forward.)

Regarding ginkgo--
My biggest question..how is this pronounced? :) geeng-ko bill-o-buh is how I understand it to be. Other opinions welcome.

How much do you give Braska? Braska gets just about 0.3 mL each day of the liquid. The liquid we use is 500 mg per mL. Some of the popular brands are only 80 mg per mL. The dosing instructions in general, as found here, are for 5.5 mg per kg (2.2 lbs). For Braska that would be about 60 mg, which would be just a few drops of our brand of liquid extract. I’ll be honest, we give her a bit more than that equation recommends. At first it was simply because I didn’t understand the different strengths of the various brands, and then it was because she does really well on the dose she takes, so I’m not going to mess with it much. There are a lot of different thoughts among families who use it and developmental pediatricians about how much is really the ideal dose. Many recommend more mg than we use. I have heard many say that it’s more accurate to use a tablet version for milligram purposes, but with the g-tube situation in our house, liquid always works better. The bottom line for me is that it is not something that is dangerous and must be taken to the exact mg amount, so I’m comfortable that we’re within the proper range.

ETA: My friend Tricia and I spent a while last week looking over links and Googling dosing and strengths of different types. We came up with some good info and some residual confusion. But I feel comfortable after reading quite a few things that we're within an acceptable range for Braska.

Just out of curiosity, did you tell her teachers what was likely causing the difference? If so, what was their response? After we had received reactions from teachers, therapists, and other caregivers, I did talk with most of them about it. (I can’t remember which conversations I had with whom back then, very honestly.) But I do believe I let her teachers know that we had started this and that I felt that was helping with her ability to cooperate and pay better attention, participate better in group times at school, etc. I can’t know for sure, of course, which elements were due to GB, but I do know that the days she seems “off” or “out of it” a little bit, as the teachers or therapists might mention when I pick her up, those days are often days that she didn’t get her dose in the morning or even for two days in a row. We try hard not to let that happen, but life interrupts my plans sometimes. I don’t remember anyone have anything negative to say about her taking it. The consensus seems to be that if it is helping her, they are all for it!

The biggest thing holding me back has been the issues I have heard about sedation/blood issues and ginkgo...did you have any concerns about that?
I’m assuming you mean the issue with the blood thinning quality that can be part of ginkgo’s effects. I am not worried about this, specifically. Most everything I can find on this particular element of GB simply states that as long as the GB is stopped 36 to 48 hours before a sedation or procedure, and started at least 24 hours following the procedure, there are no problems. Braska will be having her eye surgery in a couple weeks, and we’ll be stopping her GB a couple days before and restarting it probably 2 days after.

Also, there were some questions asked of me about what our doctors felt about it. Our pediatrician generally has the “if it doesn’t hurt, go ahead” philosophy, and though I don’t think she is necessarily recommending GB to her toddlers, she didn’t have any problem with us doing it. The doctor at the DS Center at StL Children’s said she hadn’t seen enough evidence to really solidify GB’s positive effects in her mind, but that she had known of many families who use it and have reported great improvements.

I’ll just close this part by saying that there are a lot of other supplements and formulas out there that people swear by. That’s ok, but this is the only one I’m currently interested in. I’ve thought a little about Longvida Curcumin lately, read some interesting things about it, but for now, we’ll stick with our current regimen.

Regarding eye surgery--
How did they initially diagnose this? We have been seeing vision specialists, both of the therapeutic and medical varieties, since Braska was just a few months old. She has had the tilt up, with her chin in the air and looking down her nose at things, for about 3 years, I’d say, with some less frequent periods of it even before that. We’ve seen the pediatric ophthalmologist at least every 6 months since we started with them at Braska’s 6-month check in May 2007. The combination of her crossing and her strange head positions have been discussed at almost every visit.

Initially, the crossing was determined to just be a symptom of her farsightedness, as she struggled to focus on closer things and then crossed from the difficulty. This was when glasses were prescribed for her at 12 months old. It did correct the crossing for a while, but when she was about 2 1/2, the crossing was really seeming to come back in the left eye. Even with her glasses, that eye would sometimes drift inward.

As the head posturing got to be more consistent and more annoying, quite honestly (to me, not to her), we brought it up again with the eye team, and they really felt like it was not visual in nature for a while, probably a year. They looked at many possibilities and examined her several times, but everything pointed to her being able to see ok. We had her, in turn, checked out by PT and OT for this, asking her therapists to see if they thought it was “stacking” or a strength issue that caused her to slouch and rest her head on her upper back. After looking at it from several different angles, everyone felt like the source had to be a vision issue.

So this past year I pushed a little harder with the eye center, asking for more research to be done to look at possible reasons for this. The hang up kept coming in that Braska presented differently every time they would check her eyes. One time they would see this, the next time they would see that. We were told that if it were one or the other, it could be repaired, but they didn’t want to aggravate one by working on the other. Etc, etc, etc. It really became frustrating.

After a few diagnostic tests, including a Cardiff acuity test and some limited video recording of her eyes to study the patterns of the nystagmus, it was finally determined that this Manifest Latent Nystagmus was her proper diagnosis, along with the esotropia (turning inward) strabismus. Part of the element of the MLN is that it looks different at times, so it caused them to be “stumped” (their word) for a while in firming up a diagnosis.

If you’re looking at Braska’s symptoms and seeing something familiar at your house, I’d definitely bring up these diagnoses and see if maybe they fit. I’m NOT saying that they will, but these things are rare enough that it might have been a while since the opth has seen a case, I suppose.

…our dr. is doing some research, but I'm thinking I'm sending her some info on this diagnosis as it seems to be very familiar...do you have any other sources or websites you have found useful? I don’t have very many websites, honestly, to refer you to specifically, but here’s a few I found that refer to the Manifest Latent Nystagmus and the head tilt element. Since we now believe the tilt to the side to be due to the strabismus and the tilt up (chin in the air) to be due to the MLN, there are two separate lines of both diagnosis and treatment for each individually. Our doctor does think that the first surgery may help the second problem as well, but he feels it will not make full correction. So we’ll probably be looking at a second procedure in the early fall.

MedHelp topic
AllAboutVision
American Optometric Association

Feel free to ask any other questions you might have… it is amazing how much we can learn from each other as we all encounter new challenges.

5-year Momiversary

2011-05-08T07:45:00.001-05:00

It’s been 5 years since I had the first Mother’s Day that was more personal due to my new role as a mother. And Braska wasn’t going to be born for 6 months. I don’t remember that Mother’s Day, as it’s lumped in with a period of time that for sanity purposes has been removed from my quick-recovery memory. I’m sure there was little if any fuss made over the day, but I’m also sure I didn’t miss the significance.

The beauty in looking back sometimes is to see how far we’ve come. This is a common thing for me. Because we have come so far. SO far. Our little family of 2, then 3, and now 4 has experienced more life-changing, breath-stealing, patience-testing events than I ever thought possible… but I accept it and am thankful for it, even when some things still creep up and remind me of the hurt.

Because had it not been for the journey, we would not be at our current place. And this place is not so bad. Not bad at all.

To wake up with little faces next to the bed who want to cuddle and play before we all start our day.

To spend so much time marveling at the silliness and the sheer volume of smiles that fill our home every day.

It is not always pleasantries and giggles, but even in the most trying times of disobedience and 2-year-old drama and the ripples of disability, this is where I’m supposed to be, and I’m doing my best to embrace it and not miss a minute along the way.

And a note to my mom, Happy Mother’s Day… thanks for teaching me to be the mom I am and giving me the genes of determination to always withstand the bumps in the journey.

Gotta go with ginkgo

2011-05-03T16:09:00.001-05:00

(Biloba, that is. Liquid gold. Brain power.)

If you heard the Beverly Hillbillies theme and rhythm in your head as you were reading that, you’re as twisted as I am. Welcome.

The point of this was supposed to be telling you about a great sale on Ginkgo Biloba at Puritan’s Pride. So there ya go. There’s an awesome sale. Buy 1 get 1. Or even better buy 2 get 3. Yeah. That’s my kinda deal. Just ordered me a sweet fivesome a couple days ago. Today’s the last day of this current sale!!

But I figure I can’t really just throw out that there’s a sale, that I ordered 5 bottles, and then not tell you why we would stock up like that. That’s just not fair, now is it.

Back in the fall, I once again looked at the option of ginkgo. I’ve heard parents talk about it, and I know some adults with no particular disability or diagnosis who love it for it’s help with maintaining a sharp memory. I found several bloggy friends who use it with their kids, most preschool or early elementary age, and I talked to a few of them in detail. I also did my own research about what it had to offer, how the different brands were different. (Found that the main two brands I found are, in fact, not different at all. Hence my going with the less expensive route. The route I linked to above.)

Combining that with what I’ve learned about GABA from DS researchers and conference speakers, I decided that we were going to give it a try.

The nonscientific summary is that there’s too much of something in the brain in kids with DS and ginkgo is effective in inhibiting or absorbing that excess. This allows for better connections in the brain. (I’ll include some more scientific links at the end.)

For us, it’s been like seeing Braska connect what she knows with the ability to DO it.

I began her on GB and didn’t tell anyone. Not her teachers, her therapists, or even her dad. The teachers and therapists commented after only a few days that her attention seemed to be better, that she was communicating a bit better, and that she seemed more “on.”

That’s a recurring sentiment around here. She is just “on,” or “with it,” or “sharper” when she has GB in her system consistently.

M wasn’t initially as convinced, once I told him about it and what her team had said. I noticed a difference, too, but I didn’t want it to just be my perspective, since I knew, and the psychological element of *thinking* I was seeing a change was possible.

And then one day he mentioned how “out of it” she was. She was kind of zoned out. She wasn’t as responsive, as quickly, anyway. And I told him she’d been without the GB for about 4 days. As a trial to see if we saw regression back to the former state.

And we definitely did. I was pretty impressed, I admit.

So she’s consistently been on it ever since. Save for a day here or there that I forget, when the schedule is different in the morning or something.

Braska’s speech has always been her strength. Still is. Her articulation is great, and her vocabulary is very good as well. But until these past several months, her language—the actual usage of all those words—was still lagging behind. She could identify anything, label like crazy, but she didn’t USE the words in sentences, asking questions, spontaneously.

She is kind of blowing me away lately. The spontaneous sharing of info. What did you do today? Where did you put your shirt? How was school? Who did you see at Y-school today? She can actually answer the questions now.

She just randomly comes to share thoughts with me…

“Mommy? I need some milk.” I ask her if she wants a drink or wants it in her belly (via g-button). She’ll tell me whatever her whim is at the moment. And then she’ll tell me when she’s full.

“Mommy? Belle Belle go outside?” When she sees the dog by the backdoor.

“Mommy?” (See a pattern? Everything starts with a questioning tone to Mommy.) “I wanna watch Welcome to School.” (Signing Time DVD)

When leaving the house or school or anywhere, “Mommy? Please give me your hand.” She stops walking and reaches up til I comply.

Just today, after her napping in the car for a bit after we arrived home from running errands, she came to me in the house and said, “Mommy? I need put on play shoes. Go outside and play, please.” She knows that we don’t play outside in our “go out nice” shoes, so she came to tell me to change her shoes and why. Not bad.

It’s most interesting to watch the concepts that she grasps and can now articulate. Abstract concepts are notoriously difficult for kids with DS to get. At least, according to the people who study such things and most of the parents I know. She still struggles with many things, but she has definitely made great strides in some new conceptual areas.

It’s hard to give great examples, I guess. But those who have seen the before and after all seem to agree. For Braska, it makes a difference. For Braska, it has brought new comprehension and connection between concept, understanding, and appropriate related action.

I can’t make any guarantees, and I’m not pretending to do so. But I can share what’s worked for us, so that you can make a more informed choice should this ever come up on your radar.

A few more links on the subject of Ginkgo Biloba…
Ginkgo FAQ
Ginkgo Info (This is not an endorsement of the Changing Minds Protocol!)
Ginkgo and DS (a parent perspective)

I’d love to hear if you have tried GB, what you thought about it, and/or what brought you to that decision/conclusion.

An eye plan

2011-04-28T23:14:00.000-05:00

(Backstory here… if needed.)

We saw Dr. L on Monday. He decided that although there IS Manifest-Latent Nystagmus present with Braska, it is not the primary concern that needs to be repaired first. He feels that the strabismus/esotropia (Left eye crossing inwardly) can be corrected first, hopefully making improvements in the head tilt that Braska consistently has. (That’s the tilt toward her right shoulder.)

The tip up, chin up in the air looking down her nose at everything, is mostly likely still related to the MLN, and we will be looking at a second surgery to correct that, probably in September.

So for now, we’re planning on surgery #1 on May 18 at StL Children’s. We appreciate your prayers for health between now and then, a successful and uncomplicated procedure that day, and a swift recovery with as minimal a level of discomfort as is possible.

Easter chicks

2011-04-27T23:12:00.001-05:00

We had a very nice Easter. Good visit with family and fun for the girls. Braska will be sharing more details about the day sometime tomorrow… if you’re into the back story.

Just a couple pics that sum up the day…

My girls, who will NOT look at the camera when asked. Of course. But this is a great shot of the faces I get many times a day. “Come on, Mom. We are SO over this camera action.”

And my sis, the host for our Easter festivities. Gotta love that straight-from-Mexico tan. Darn her little jet-setting self. For real though, we always have a blast hanging out at her house… cooking and eating and talking about all the latest stuff. Good times.

Stereo reception via foil

2011-04-26T18:12:00.003-05:00

Edited to add: No, I'm not contacting the beings from out there somewhere. Just getting a little hair spruce-up. Ya know, sprucin' for summer.

Easter afternoon naps

2011-04-24T15:27:00.003-05:00

We had a nice morning, church with family, then down here to my sister's house for lunch and egg hunting. The girls have been good and seem to be enjoying their first actively-easterish Easter. More pics soon on Braska's blog...

For now, the girls are napping in their rooms, as they claim the extra rooms at Auntie's house. It is time to just relax...

It can happen. And it did.

2011-04-23T15:52:00.002-05:00

If you’re a local around StL, you’ve probably been watching the coverage all day. If you’re not around here, you might have heard a mention here or there.

The St. Louis metro area was beaten pretty badly by a very persistent tornado. There are still official reports to be made, but it appears to be one tornado, bolstered by some of the craziest and roughest storms full of hail the size of softballs and inches upon inches of rain.

The airport, Lambert-St. Louis International, was hit and is closed. That’s new. And strange. But more upsetting are the dozens of houses all the way through the area, in a line West to East, damaged severely. Many, people are displaced from their homes today.

People in the city always seem to think that these storms don’t happen in the suburban and urban areas. It’s always in the rural areas. It’s always somewhere just outside of our area. It can’t happen IN the metro.

But it did. Over and over and over. (Link to many photos.)

We’re ok. No damage to us or our house. And we are very grateful. We spent a good while in the basement last night, but our property was not affected. Unless you count the lake of standing water in our backyard…and the water leaking into our basement through the wall on the back of the house. But that’s nothing compared to hundreds of families in the area.

Thankfully, and miraculously, no one has been reported with any major injuries. Amazing.

I watched the coverage last night for a while, and when I woke early this morning, I turned it back on. A few minutes into the news reports and helicopter footage, they go to another area of the destruction and show several houses that are damaged along with a larger building that looked very bad. As the helicopter zoomed in a bit, it was clear that the bigger building was a church. The trusses over the auditorium were still standing, but there was nothing attached to them. The pews were all visible, the stage and the baptistry.

And then I stopped and hit the rewind button on my remote. The stage and the baptistry. I know them. Well. Then I hear the announcer say where they are. Near Washington-Elizabeth. Oh my goodness. That’s my church. Not where I currently attend, but that’s where I went for some of my college time in the North County area, and I also went there while I lived in the area again a few years after graduation. It’s about 10 miles from where we live now.

I just stared. The stage is very unique, it was clearly Ferguson Christian Church. The helicopter camera zoomed out again, and I recognized the shape of the building and the location near the corner. I couldn’t believe it.

I used to lead worship there. I played the piano in there when I was early and needed to just play a bit. I stood on that stage many times. It was my home church for a few years. It was a place I belonged for that period of my life. I had great friends there, and I still know several who attend there. The preaching minister is married to one of my good friends from college. The chairman of the elders and his family were very close when I was there before. I housesat for them, and their kids were my friends. The children’s minister and her husband went to college with me. Her father was one of my professors, and he’s an elder there, too. All those people were in the building when this happened. In this auditorium. Until just 2 tiny minutes before this happened.

And now it’s just walls. The classroom part of the building is less damaged, judging from the aerial view, but the auditorium is just walls. It is very surreal.

There were people in that auditorium just moments before the tornado hit. Thanks to a text message notifying of the pending twister that had done damage just west of them, they were able to get everyone downstairs and safe.

Amazing. What a blessing. And yes, even in the midst of such sad news, I know the people there are so thankful that no one was hurt and they are feeling blessed. They know that their church is not that building. They know the Lord and his people will provide what they need. But of course, it’s so sad to see the building destroyed. (Video clip here.)

Please remember them in your prayers, as well as all the many others affected by these storms last night. It’s going to be a very different Resurrection Sunday at FCC this year.

Eyes can be scary

2011-04-19T22:05:00.001-05:00

Today was the appointment with Dr. C to discuss (again) the issues Braska has had for almost two years now. The head tilt and tip. For lack of a better description. I wish I had time to find pictures, but if you’ve been around long, you’ve noticed that she looks down her nose at everything, literally. (I just peeked at her blog and saw that the picture posted earlier today of her at the Eye Center’s front desk shows the tip and tilt, both. If you look, she’s looking into the desk area, but her head is aimed as if she’s looking up at the ceiling. Her eyelids look closed because she’s always looking out of a little space right above her cheek. The pictures of her scraped up face and head from last week show it as well. Rarely do we get a look with open eyes straight ahead through the glasses.) She tips her head way back and almost faces the ceiling to see something straight in front of her. She also tilts her head to the right shoulder as well. In the last year, we’ve noticed that even WITH her glasses, her left eye is crossing inward quite a bit. This is supposed to be managed with the prescription on the glasses, but it seems to have become worse.

It’s been one of those things that drives me nuts, but that I always feel bad getting frustrated about since it feels like it’s just because I’m vain about the zillions of pictures that I take with her nose in the air.

The reason why she does this is that she has nystagmus, or “wiggly eyes.” This is just one of a few diagnoses that she has related to her eyes. It’s been present from birth, though we noticed it more at around 4-6 months and then progressing more in the last couple years. It’s gotten really severe, in that she often is tilting or tipping at 45 degrees, which is pretty significant when it comes to the problems it could create with posture and other issues. The tilting or tipping is to find her “null point,” the place where the eyes do a minimal amount of moving. She is adapting by positioning her head because she is unable to control them as she wants to when she is looking at things straight on.

So today, after “stumping” our ophthalmology team for a while, or at least presenting in confusing ways during the last several exams, they were able to pinpoint that she has what is called Manifest-Latent Nystagmus. This is good news because at least now we know where to look for our next step. It’s not AS good, because the next step is most likely surgery.

Granted, we’ve been through more than a few surgeries, open-heart being the most significant, and we’re not really afraid of procedures in general. BUT for some reason, this one has had me more hesitant than the others. Even the heart. Because it’s her EYES. I have real trouble considering the results of something going wrong with her eyes. The heart HAD to be fixed for her to live, and somehow, that wasn’t so scary. It was the only option. In this case, it does appear that it NEEDS to be done, also, but I still wish they weren’t going to mess with her eyes.

Dr. C, though she is VERY experienced and a lead of the eye center at Children’s, has not done the Modified Kestenbaum procedure that is required to help correct Braska’s issue. But another doc in the group has done some and we’ll be seeing him on Monday morning. Dr. L will be the newest member of our specialist team. Dr. C also feels that the crossing that we see a lot in the left eye is also a result of the MLN issue and not actually true strabismus/esotropia. I’ve read a lot about this today, and there seems to be a lot of evidence to back her up. That’s why she has letters after her name and I don’t!

It was explained to me that the adjustments to the eye muscles will be somewhat rotational instead of the typical horizontal or vertical. So her particular issue and the needed repair are definitely more rare than most similar issues.

Yay. Because we can’t do anything normal around here!!

Dr. C did confirm with me that this is NOT a DS thing. This is a nystagmus thing, and many kids have nystagmus without having DS. It is not uncommon IN kids with DS, but what she’s dealing with now is not one of “those things” that just comes with having DS.

Chalk it up. Her feeding issues are not DS (FAR beyond the “norm”), as well as a few other fun things that are part of life around here. And now we add this new diagnosis…manifest-latent nystagmus. No big deal, just something to learn about, address with the proper treatments, and continue to move on.

I’ll know more about timing for the repair after Monday’s appointment. We appreciate your prayers for our girl and for our team of great doctors. I’m very thankful that we have ready access to such a great facility and group of physicians.

A long week, short weekend

2011-04-15T14:16:00.001-05:00

Just because it was a long week doesn't mean it was a bad one. But with an all day training tomorrow for volunteers in the new parent program of the DSAGSL, it is going to be a short weekend. And that makes me a little sad. I would love to have a day to catch up on the house and a day to take the girls out for errands and playgrounds. We will just fit it all in. Or not. Maybe we will just enjoy the down time we DO have and I will not dwell on what I don't get done.

Easier said than done. But I will sure try.

Make it a great one.

multitask-a-blogging

2011-04-13T09:46:00.006-05:00

This morning we got up a little late after some much needed extra sleep. After a super quick breakfast for the girls, we jumped in the car for school. We hurried in to the school, dropped Braska and hurried back to the van. Only to find that I set my keys down in Braska's cubby.

Back to the classroom and back to the car. Kinlee and I came to the Y for a workout since I don't work on Wednesday mornings due to feeding therapy at 11:15. So now KiKi is at Y school and I am on the bike pedaling while blogging about our crazy schedule lately. Loving my "new" super cool Droid for this and other reasons. Not loving the short battery life but I will adjust. Happily.

When I finish here shortly, we will head back across the highway to the school for feeding therapy and then home. With a likely stop by for a QT visit with our buds. Tonight it is back to training for me. More CPR and then first aid and O2. Done at 10 pm. Then likely a collapse for just a few minutes!

Life is nuts right now but I'm not regretting our decisions yet. Just adjusting with a smile whenever possible. Flexibility is SO huge. If you don't have some, get on it!!! Life will be more enjoyable!

Happy Wednesday friends!