Your opportunity to help NOW

I just found out about a need, and you can help. Yes, even you over there!

The Newbold family is in the Ukraine right now to bring home their little girl with DS. They had a daughter with DS who died from leukemia at age 2. They have since committed to adopt two children, one is home, and now they are there to get little Dasha. I don't know them at all, but they are working through Reece's Rainbow. They have just learned that the amount they were told by the government to have ready is incorrect, and they are short $2000. They also have to come home without their daughter, for the second time, as they can't get the final adoption process done until next month now. So more plane tickets must be purchased. And so their expenses are sudden and significant. I can't imagine how devastated they must be! And how difficult when they thought they would be coming home with their best Christmas present!!

I gave right away. I just had to. This is what our community of blogland is all about, support in whatever form is needed. I ask you to pray, primarily, that they will be able to overcome these obstacles. And I ask unapologetically that you give, even $5.00 will be so helpful. Please bless this family and share your encouragement on their blog.

Thank you.

Great gifts for therapists, Angel Tree 2008

I just went and made my second round of "gift buying" at Reece's Rainbow. We did this last year and are doing it again. The response from our team last year was amazing.

Alot of us buy for Sunday School teachers, school teachers, therapists, daycare providers, etc. It's can be a chore to find the right thing, and if we admit it, most often what we give is either edible (not that it's bad!) or it's a dust collector. The thought is nice, but who really benefits? So we started last year with donating to Reece's Rainbow in honor of our therapists and service coordinator. They were so touched, and a couple of them actually ended up paying it forward and using the idea for some of their gifting as well. I heard from more than one of them that they get so many nice things, but they really don't *need* any of it, so this was a way to be appreciated but have it help someone who really DOES need it. I just gave them Christmas cards with a note inside that we'd made a donation in their honor and stating our appreciation for their work. So simple, but so very well received.

Please check out the adorable faces of kids who are still looking for homes. (Click on the picture below) You can even get an ornament with the child's picture that you've donated toward if you do it today (the 15th).



I give to RR frequently and significantly. I don't say that for any pat on the back, it's not about that. It's about putting our money on what's important. It's about stopping just the talking about how we are all supposed to help others and put those with needs first and actually DOING it.

I hear people talking about if you have "extra" to give to RR or other great causes. I appreciate any plug to help others. But I don't know anyone who thinks they have "extra" money. I know that I don't. We're literally cutting back on everything from what brand of milk we buy, to eliminating some of our "fun stuff" that we don't really need, to keeping our house less toasty warm in order to simply make ends meet each month. We're not doing Christmas gifting with family, (which is more than fine with me since I feel like Christmas gifts should be for kids anyway...all us adult siblings can buy whatever we might want so gifting becomes a hassle and stress to try to find something they haven't already bought for themselves, but I digress) and I don't miss it because to me Christmas is not about the gifts at all. It's about yummy meals and pretty lights and having fun and mostly about celebrating Christ's birth and the true gift that is to all of us.

Regardless of what the bottom line in the checkbook says, I make room for giving. We've never gone without. I don't expect we will. God always blesses us, not necessarily monetarily, of course, but in whatever way, it's more than worth it. It means I don't get the Chinese food every time I want. It means I only have one pair of maternity jeans. It means we eat alot of the same cheap food at home. And I don't mind one bit. These kids don't have any of that, and if they don't find homes, they may not even have their lives. Institutions are no fun, and that may be their future. It is just that simple to me.

So you may not have extra. You may have already done your shopping. But do you have something that could make a difference to a child's entire life, not just their playtime habits for the next few days? Will Braska wish we'd have given her some toy this year or will she benefit more from knowing that her parents value people and especially children who need to be spoken up for?

Honeymoon is over

Ok, it's not a honeymoon with a new, peaceful, compliant, baby girl. But still. This oh-so-easy little girl who has lived with us for the past 2 years has somehow morphed into a little grouch. And in the process, she has shared this contagion with her mother, who is now becoming one as well.

Is it teeth? Maybe. She's got a runny nose, like crazy. She so rarely has had one that I always try to find a good reason. She is WAY restless. No sitting still to play a while. Fussing when she's corrected. Heck, *needing* to be corrected!

Is it turning 2? I've always said it's not fair that we don't get a delay for 2 since we have all the other delays. She's shown some attitude, but it's pretty manageable prior to this week. Suddenly, she's becoming a bit of a pain in the rear at times. I don't cotton to this, no sir.

Alright, I know there are several of you who are laughing or rolling your eyes at me. If you know Braska personally, you are thinking I'm ridiculous. She's so darn well behaved at all times. She listens and minds. Yeah! That has been the case. I hope we return to that, but for now... this little booger is driving me nuts. Gradual, that would be a nice way to transition. But this all at once change to a stubborn toddler with a snotty nose... no fun.

And yes, I know. My world is soon to be rocked by a kid who cries and throws fits for no reason and actually *requests* to eat. My life as a mother with smooth sailing and happy, contented, quiet days are apparently over. Laugh if you must. Enjoy my coming-of-age. It's ok. I know I've had it good. I know many of you have said repeatedly to "just wait." In the overall scheme of things, this is nothin'. But that doesn't mean it's any fun!

IFSP meeting 12/08/08

It's that time again... time to look at what we've accomplished and where we're headed. Or I should say what BRASKA'S accomplished, since I'm not working all that hard, but she IS.

Let me back up for the sake of those who are newer to this fun of acronyms. IFSP is the individualized family service plan that is initially done with a kid enters the EI (Early Intervention) system, normally soon after birth for kids with special needs. Every 6 months, or when a change needs to be made sooner (OR when you change states), it is reviewed and updated. This goes on from birth to the 3rd birthday. In our experience, it has included the service coordinator--who keeps everything in line and organized regarding all our services/therapies needed, the various therapists and service providers, and the parent(s). We basically walk through the various therapy categories relating to the goals that we set 6 months ago, discussing how she has done, what goals she's met, what she needs to work on now, and then specifying what goals to set for this next period.

We moved to Missouri right after Braska was 18 months, so it works out nicely now that her meetings fall close to her birthday and half-birthday. I like things nice and neat like that.

So Monday afternoon was the big day. I don't really fear these meetings like some seem to, but it's not like it's fun either. I like our team, so it's not their fault. It's just sometimes hard to sit down and plot out what you want your kid to accomplish in the next 6 months. And I knew that some goals would not change from the last 6 months, in our case. Thanks to Little Miss Refuse-to-Eat. In attendance were Miss C (best service coordinator ever!), the OT, PT, and ST(By the way, that's occupational, physical, and speech therapy...all the letters...), and the nutritionist. Oh yeah, and I was there too. Of course, they always sit on the floor! Come on, people, why do I have sofas and why did I clear them of laundry and toys?!? Silly girls. They humored me and sat on the sofas. Aren't they nice?

Overall, it went well. I was pleased that everyone seemed to largely be on the same page as far as what we're looking at for the next few months, and they were very cool about the changes I wanted to make. I won't go into great detail. If you're interested in the goals, I can add more on them when I get the official copy of the updated IFSP in a few weeks. But I'll just give you an idea of what we're aiming for and what we changed or tweaked.

Kiddin' Around-- This is a new thing for us. We actually went on Monday morning and observed; well, actually we got to sit in for a bit of class. It's what I call pre-preschool, for kids that are 2 and receive some kind of EI services (if I understand it right), but there are a variety of issues. There were 5 kids there, though the teacher told me they would be getting 4 or 5 more in January when Braska starts. Her buddy, Jack, is one of those...and we're very excited that they're "starting school" together. One of the little girls in the class now has DS, and she's adorable, of course. Quite a live wire too. So there will be at least 3 of 10, and that seems cool to me. Side note: Since we live only blocks from Jack and he's just less than a month older than Braska, I'm hoping that they can go through school together. That would be so cool for a kid of mine, since I never went to the same school for more than 3 years. Anyway, KA is a weekly class, I think for a couple hours, and the teacher, Miss A, seems very nice. Since we'll be adding this weekly, and due to Kinlee's impending arrival, we decided to make some other adjustments to the schedule. Braska will start KA at the beginning of January, and from what we saw for the short while we were there on Monday, I think she's going to like it. She liked sitting in the circle in her chair and singing songs. She picked up on the Hooray! parts like a pro. And the romper room....it's like toddler heaven in the form of a colorful, cool playroom! I feel good about it fitting well into what we're working on with her now, and I like Miss A's approach to the few things we chatted about.

PT--This has been weekly, and we're keeping it that way. Braska has very low muscle tone, even for a kid with DS, so she has to work VERY hard at gross motor skills like crawling, standing, and taking steps. This is probably her most difficult element. She's just getting to where she will cruise a little at the couch, more at the bathtub. She loves to take steps when she's holding our hands, but she's not strong enough to hold it together to stand or step on her own. She'll get there, but we'll keep working hard in the meantime. She tries hard...it just takes so much more effort than it seems like it should for her. Braska likes her PT very much, so that helps alot.

ST--This has been weekly for about the last year or so. As many of you know, this is Braska's strength, in my opinion, and I think the pros would agree. She understands instructions and minds them, for the most part, and she is loving adding more verbal communication every day. Since we know that right now she is very self-motivated, we are going to back off to every other week. This will help me in easing the schedule, and we do not feel it will harm her at all at this point. We'll continue all the work we do at home on these things, which is quite a bit of reading, singing, and practicing words, sounds, and letters. And the ST sessions will focus on labeling (like pointing at a picture of milk when asked which is the milk) and working on two-word combinations. Miss J has some good ideas of what to do for our next steps, so I think Braska will continue to do well, even with the change in schedule.

OT--This has been weekly, and it has varied alot. Our OT in C-U was also kind of our PT for the first year of Braska's life and helped her through sitting, and transitioning to sitting, and working on crawling. Once we came here, our first OT was all about feeding, which was what our goals were for that area. When we changed to our current OT, the approach changed, and it has been more about interacting with food but not so much eating. Braska's never had much focus on fine motor in the "classic" sense, and she's not making any great strides in feeding, so I decided that I wanted to let go of the food element for now and go with more of the fine motor in a play-based environment. Her issues with feeding are less about sensory problems with food and more behavioral. Plainly, she's stubborn!! Well, that might only be 95% of it, but still. The cool thing with scheduling OT is that our OT is based in the same facility location as KA, so she is going to see her for sessions there during KA every other week. I think that's wonderful, and I think Braska will probably respond favorably to that change. It will ease up our schedule too. Big thanks to the OT for doing that!

Nutrition--We've been seeing the nutritionist every other week for a few months, and she works on introducing foods and feeding. Braska cooperates pretty well considering her history, but it's slow going for sure. We're going to keep it the same for now and continue this part of her feeding work. Honestly, we are just not worried about this. She will get it. It may take watching kids at school and her little sister eat and enjoy yummy food to get her to take an interest. And that's fine. We're definitely at a no-stress point with the feeding thing. It's exhausting to make it a big deal. It will come. I've no doubt. In the meantime, it takes all of 5 minutes to feed her and there's no mess. What's to complain about?!?

So there you have it....that's the important part of the meeting. It was interesting to look back over the IFSP from June and see how type A I was, and then to note how nonchalant I am about this stuff now. Life changes, priorities change, and the kid's needs change. We're alot more laid back now, and I like it. Miss C did make mention of the transition meeting in the spring. What?? Do we have to talk about that already?? Actually, I tease her, but I'm not so worried about it. I've got faith in this bunch to get us where we need to go, and I like that we have a few options about frequency for when she starts preschool next fall after the transition on her 3rd birthday. We'll deal with that later... For now, I feel good about the goals we came up with, the plan for the next few months, and Braska's progress.

Oh yeah, and I did let them know that we'd probably be off a few weeks in February when we're trying to figure out how to have 2 girls to deal with. I've gained a bit of wisdom since planning only a few days off when I had Braska! Ha...little did I know...

If you have questions about any of this, feel free to ask!

IFSP fun

I just put up some info on our IFSP meeting from Monday on Braska's blog. It went well. I feel like we're in a good spot.

And let me say, that's no small thing. It's nice to feel like some aspect of life is in good shape and under control. It's not like my life is bad, no way. Just that it's good to be able to check one more thing off. Braska's in good hands, and we have a good plan. I'm thankful for our team, and I appreciate how much they like my girl!

You moms or parents who have the privilege of doing these IFSP/IEP meetings...do you like them, dread them, go with the flow, or have a planned agenda of things to accomplish and change at each one? Apparently, some parents never have much input, just going with whatever the team says. It's good to trust your team, but I'm surprised that the parents wouldn't have things to say in regards to what they want for their child that the therapists may not be privy to.

Just curious...

Little call, big letters

This will make more sense to you DS moms and families out there... I apologize for the cryptic nature, but you'll have to trust my reasoning.

Braska had a lab draw on Tuesday last week. The GI called me Wednesday and said there were some significantly elevated levels in the results. Ok fine. Not like we've never had an abnormal lab. But then he used *those* words...the C word and the L word. Said he'd be talking to hem/onc. We needed to go redraw on Friday morning. We didn't freak or anything, but when I hung up the phone, I thought, "Wow, so that's what it's like the first time they mention it."

We took her for her draw again on Friday morning, and we figured everything was fine since we got no call over the weekend. Yesterday I checked in with them. Dr. R confirmed that everything was clear, almost in a "weird way," but they checked with the lab to make sure it was a viable result. All is well. Follow up in 6 months as usual unless there are concerns.

We're thankful every day, and especially so now.

Point taken... good news first next time

Sorry to scare so many of you... I didn't think about anything other than the chronological events of the last post. My bad. There was never any great fear or concern on our part, so I am sorry to cause stress or "freaking out" to any of you! Thank you for all your kind words, though. We love having so many people love our little princess.

Next time I'll start with ALL IS WELL!!

One seriously long day

I can't even fathom going through the details right now, but I need to for good record keeping. It will have to wait. I left the house at 8:03am and returned home at 7:05 pm. And I don't live 3 hours away anymore!! These days usually go so smoothly...but the honeymoon is over. This will be the last day we do the full day of visits. We moved here to be close, so we'll not do more than 2 or maybe 3 on the same day from here on out.

Today's accomplishments:
ENT--Check
DS specialist--Check
Cardiology--Check
Echocardiogram--Check
Eye center--Check
GI--Check
Audiology--Check
Lab--Check

Braska did marvelously, with some understandable rough spots. But she was great overall. And thank God that my mother-in-law came along... what a day.

Details later, probably on Braska's blog in the next few days. Ahhh! And I still haven't talked about our good day yesterday... I'll get there. Sometime soon.

Rested... for now

We've had a rough couple nights. Braska's birthday party went well. I'll get to that later, but soon I hope. But last night, Braska went to bed at 8pm (quite early, and without full feeds for the day) and I hit the pillow at about 8:45pm. M came in then too, because none of us have had good regular sleep for a bit. He was out in 2 seconds. I laid there til about 10 before falling asleep, but still. I expected Braska to wake up super early since it was an early to bed, but she slept til just after 7:15am and I slept till right around then. Not a bad deal. I'm up with visions of grandeur for things to accomplish today... we'll see.

Tomorrow is a crazy busy day, 7 appointments at Children's DS Center and various specialists, from 8:45am til about 4pm. Thank goodness for my mother-in-law coming along to help occupy and be extra hands through the day!

November is here

Fair warning...I'm not all that "with it" so who knows if this will be cohesive or not.

October went fast. I didn't get the whole post-every-day thing, but I did get in 31 total. Does that count for 31 for 21? I'm not going to stress over it, for sure. I did enjoy all the updates from all of you. But there were a few times when I felt posts were below par for my goals with this space. Not the end of the world, of course, but still...

November's going to be a busy one too. Tomorrow's the big day. Election day. I've already voted, thankfully, so that's nice. I can't tell you how happy I will be to not see another campaign ad of any kind. I've been praying often about this whole thing for months. No, that doesn't mean, "God, please don't let him win." That's not it at all. It means asking for peace and patience, as well as understanding that often history shows that nations are given what they ask for, even if it is not what is best overall. Sometimes that means we'll hurt for a while before we realize what is truly important. As a country, this could be a tough time. Honestly, it could be tough with either party winning. My hope is above all that we will realize that we are each accountable for our actions and choices. We live in a great country! And that is one thing, I don't have any desire to *change.*

After election day, we'll be looking toward our 8th wedding anniversary, my sister Julia's 13th birthday, my parents' 38th anniversary, Braska's 2nd birthday, a full day of appointments at Children's (7 hours, 7 appointments, one day), and finally Thanksgiving. Throw in 12 therapy appointments, 2 playgroups, 2 more dr appointments, and a smattering of other things on the calendar and we'll be busy.

It's getting overwhelming, I admit. I haven't felt well lately. It may just be the difference in pregnancies from one to the other. It probably has to do with having Braska around to play with, carry, deal with, and keep happy when I'd rather be napping. It's not some big problem, but it is interfering with life as I'd hoped it would be at this point in this pregnancy. I'm tempted to thin out our schedule a little just to keep caught up better, but I don't know if that would help or not. I go to the OB today for a regular check in. I'll let her know what's up, and she'll probably tell me it's just the way it is. But I'm just disappointed that I generally spend most of the day every day feeling tired and very achy. It's nothing that can't be dealt with, but it's still sometimes frustrating.

But time is flying, so we'll soon be to the next overwhelming stage of dealing with two kids out here in the open! Somehow, we'll figure it out. For now, I'll nap and rest when I can. I just miss having energy and actually *wanting* to do things outside the house.

So can someone go do some fun stuff and let me live vicariously through your experience?? Make it a good month, people!!

Distraction dancer

Sunday mornings at church are Braska's special time with Daddy. She sits with him, he holds her during the music and she dances like a crazy girl when the band gets going and claps right along with everyone else. She always attracts attention from those around, and sometimes I feel like she's gonna burst with excitement. Speaking of which, we could use a bit more of that at church, couldn't we?!

Anyway, this week, like most others, she was having a ball. One lady directly behind us played with her, waved at her, and when we sat down for the sermon, she played little games with her. She'd put her hand on the back on the chair, and Braska would push it away and smile. Over and over. (I hope she is a multitasker, because it was a really great message, so I'd hate for her to have missed anything.) Braska usually falls asleep for part of the quieter parts, and then wakes at the end to dance a little more before we go. I haven't figured out a way to discreetly video this fun...but I sure want to. It's the most animated she gets, and it's no wonder people are drawn to the giggles, wiggles, and smiles. Each week after church, as we leave, we always have at least 3 or 4 people come over to mention that they were watching her and just loved seeing her dance and cuddle with Daddy. I see it as a nice way that she makes people smile on a Sunday morning.

To hold you over...here's this Sunday's fashion pic before church. It's one of my favorite new outfit combinations. Ralph Lauren and BabyLegs with a side of Old Navy and Gymboree shoes. Can't beat it!

Ain't it kinda funny??

We're all wanting to be good little advocates, and it is a priority of mine to put a good and real perspective of life with Down syndrome "in the house." But we're all so busy just living life with our little ones that we're too busy to talk about how we're doing it. Funny.

And I guess, as many have said better than I, that's the point. Yes, we were shocked. Yes, I thought life was (cue the dramatic movie music) *forever changed.* And yes, there have been some things to figure out, to say the least. But the beauty is, you don't have to figure it all out at once. You get to wake up just one day at a time, like everyone else. And ya know what's crazy?? Life goes on. We do what we do, and we find it to be so much beyond more enjoyable than what we thought. PLUS, we have these ridiculously cute kids to play with in the meantime!

Just wish I could bottle this and share it with all those who are a few paces behind and still freaking out. It sure would've done me some good a couple years ago.

So much and yet nothing

It's 11:35pm. I should be in bed. Long ago in bed. But it's not been working that way.

And I have alot I want to get in before the end of the month, blog-wise. I want to talk a little about discipline and what we do with Braska. (Yes, even our perfect little compliant child occasionally pulls a naughty one on us...and she does get in trouble when that happens.) Part of me wants to talk about politics, but I can't formulate like I want when I'm this tired by the time I get to blogging. And I'm guessing I wouldn't successfully change many, if any, minds. (If you're undecided and just want some interesting perspective to consider, send me an email if you want.) I want to talk about the great things we've learned in these 23 months of being in this club that is living with DS.

But I'm exhausted. My kitchen is so darn messy. I need to get off this computer. So for now, these things will wait. And hey, who says I can't talk about them in November anyway, right?

Parenting Baby Galleries

Back in September, we were happy to find out that Braska had been included in the 3rd gallery of the Parenting.com A Special Joy: Babies with Down Syndrome. There are now 20 galleries! 20!! How great is that!?! And we know so many of those cuties...that's pretty cool, I think!

Check out all 20 from here.

Can I just ask a favor of those of you who don't have kids with DS but have blogs? As October is Down Syndrome Awareness month, would you be willing to post a little something with the link to the gallery page? It's kind of to be expected that those of us "in the club" would be all over it, but I think it would be a neat extension of the awareness aspect if we could spread the word via non-DS related blogs as well. We like to show off our kids, sure. But it would mean alot to have those who have been impacted by our kids to put in a plug for them as well.

Thanks, really.

True Royalty times 6!

There were some great stories this past week about some wonderful teens with DS making news during homecoming season. It is so amazing to see how well these kids have made friends and made a difference in those friends' lives. The friends will be better people forever just for knowing these super cool kids.

There may even be more, but these are the ones I've heard about. (Thanks to all who sent these to me or posted about them!!)
A Queen (video here)
A Queen
A Queen
A Queen
and a KING
and another KING!

Contagious?!?

Newsflash: DS is contagious!! Keep reading!!

Down syndrome is a genetic disorder characterized by a triplication of the genetic material on the 21st chromosome. This trisomy occurs with the first division of the developing zygote, as a result there is extra genetic material present in every cell of the individual. Recently, science has discovered that this cellular abnormality is highly contagious. As result, family members (and even friends) of individuals with Down syndrome often find themselves exhibiting dramatic changes due to this "something extra" permeating their bodies at the cellular level. These changes manifest themselves in a number of ways. Something extra in the visual cortex results in parents who view the world differently. In addition to seeing things in an entirely new light, these parents also report having an increased ability to focus on what is important. Spontaneous appearance of tears of joy have also been confirmed. The section of the brain used in logical thought undergoes dramatic changes.

Parents suddenly find themselves able to comprehend and discuss complex medical procedures. The ability to decipher long strings of acronyms appears almost immediately and it is not uncommon for affected parents of newborns to be able to differentiate between ASD, VSD and PDA. Familiarity with G-tubes, picc lines and the NICU is another side effect.

Over time, the entire nervous system is transformed, enabling parents to perform tasks previously thought impossible. These changes result in individuals finding the nerve to advocate before large crowds, speak to classrooms of medical students and educate the population at large about issues they are passionate about. These changes are closely tied in to dysfunctions in the verbal abilities, which makes it virtually impossible for parents to bite their tongue. Often, individuals who previously considered themselves reserved will find themselves outspoken and effective communicators.

The pulmonary system is altered to a dramatic extent. Parents report having their breath taken away at the slightest prompting. The cardiovascular system develops similar vulnerabilities and reports of hearts pounding loudly and swelling unexpectedly are not uncommon. One mother reported that her heart skipped a beat when her son smiled at her for the first time. The extremities are also altered. Arms reach out to strangers for support, and in turn, hands comfort and nurture those in need. Legs strengthen and balance improves, allowing parents to stand firm in their convictions and walk without faltering, even when shouldering a heavy load. Scientists are baffled by the widespread scope of these symptoms. Equally perplexing is the response of those afflicted. Parents readily acknowledge fundamental changes in their being, however, almost universally declare a preference for their new, altered level of functioning. "I wouldn't change a thing" is a common refrain. Apparently, the presence of a little "something extra" enhances the lives of individuals fortunate enough to be infected.

Wendy Holden

(Thanks to our great CL, Missy, at the iVillage DS board for posting this. I think it's pretty nifty!)

Pink and Minty

I love peppermint ice cream. It's only around for the holiday season usually, so I enjoy when it shows up in the stores. Tonight I snagged some and learned a little something.

Braska loves it!

That's my girl. She ate more than 1/4 cup of the stuff, and in our world of no food orally, that's HUGE!!!! Now understand that she has these moments. She does something then won't repeat it afterwards, so we're cautious, but we're still excited. She just kept asking for more, so I kept giving it to her. We don't care much what she eats if she will eat by mouth. For now, anything is a win.

Like I say often... celebrate the little things!!

Heartbreaker

Tonight we went to dinner with some friends. As we were waiting for them to arrive, one of the waitresses passing through the entry area stopped and talked to Braska, going on about how pretty she is (to which Braska signed "pretty" of course, compounding her cuteness). Then a few minutes later, she came back, this time with another waitress, to show her "just how pretty" this little girl was. She kind of patted her and acted like she just wanted to cuddle her, and she said, "She's sure going to be a heartbreaker one day." We agreed with her as we smiled.

Earlier this week, a woman came across the parking lot at Aldi while I was putting things in the trunk and talked to her, saying she'd seen her in the store but hadn't been able to catch up with us. She walked over a full aisle out of the way to her car to come say hello, ask her age, and comment on how well behaved she was in the store line. I thought that was nice.

We have been so fortunate in that people have always been so wonderful when we're in public. There are stories of those who have just plain ridiculous and rude things said to them about their children with DS. I always wonder what I'd say in similar situations, and who knows how it would go. But I am grateful that to this point, we've had only good experiences. People come up to use in every place we go. It's become a game to guess and then count how many people will approach us at Wal-Mart or the grocery store. All ages, men and women, lots of kids. I'm often amazed at how bold they can be. Not inappropriately, in my book, just seemingly enamored by this little girl with pigtails and glasses. She's generally kicking and dancing in the shopping cart, because she just LOVES being in one. I can see how she would garner some attention. I'm just glad that those who would say dumb or unpleasant things have not done so within earshot.

As far as I can remember right now, only one of these encounters has been with someone who had a child or relative with DS. The rest were just people commenting on her glasses or being cute or behaving in various situations. (She is really unbelievably good in public situations. We're blessed!!) I realize it may not always be this way, but for now, we are so grateful to be able to make alot of people smile. And I have found that I enjoy mentioning, when it comes up, that she has Down syndrome. At that point, no one has said, "I'm sorry." No one has put on a sad face. They just smile and say, "Really??" with surprise. I love to see a new bit of perspective come to so many faces. Like their 3 minutes of waving and talking to Braska has somehow imprinted a new realization or possibility in their minds. And THAT is worth everything.

Why EVERY life matters

Karen K sent me a link to a blog today. I get links to blogs from friends alot. Blogs that are funny. Cute kid blogs. DS blogs. Blogs with good music. Lots of blogs. Many of them, though, are stories of amazing families who are making the most of a difficult situation.

This blog Karen sent today is much the same as some others. The tragic story, some might say, and the strong people who are living through it. Tomorrow, this very young couple is going to meet the son they've been waiting for and loving intensely for a long time. But it will be bittersweet as they know his time with them will be most painfully short.

But here's what struck me... This story reminded me of why every single life matters. Even though this little boy will have such a short time on earth when he is visible and touchable and breathing air, he has made a difference that will NEVER be undone or forgotten in hundreds of lives. His parents' decision to grant their son life for as far as they can control it has impacted SO many people, even the doctors, nurses, and staff that have walked with them through this journey. We will likely never know how far the ripples of their decision and committment to their son will go, but people who are changed tend to promote change in those around them, and it continues, and the world is changed in the process.

This is one reason why I am heartbroken when I hear of someone receiving a prenatal diagnosis of any number of types and choosing to abort "for the sake of the baby." That life has a purpose. It belongs to a child whose existence is no accident. There is a specific reason why that baby is given, though we may struggle hard with the details of the "why" sometimes. This family was talked to about "terminating," but they knew they could not. The end result may be the same, but this child will rest in loving arms as his parents are able to cuddle him for the short time he has. His parents know this will be horribly painful, but they are doing what parents should do at every opportunity, putting the best interest of their child ahead of their own comfort or convenience.

I want to say so much more, but it's getting jumbled and poor, so I will simply say this...we may never know how our faithfulness in difficult situations affects others, but it is clear that it does. This family does not know me at all, but simply spending a couple of hours learning about their family and the struggle for their son's life has made an impression on me that will remain. Now I'm telling you, and hopefully you will find the same. Baby Isaac has made a difference, and he is just tomorrow getting to be held by his parents for the first time. His life matters.

The blog is He Will Carry Me and it is worth the time to read their story and their phenomenal example of truly trusting God with their most precious one. Many of you will identify with different parts of their story. A most touching aspect is the Dear Isaac compilation of letters to the boy from his mother. Even in a sad time, there is encouragment and hope. Real hope. I don't find this depressing at all. It is sad, absolutely. But it's that HOPE and trust that makes the difference.

Please join me in praying for this family as they take these next steps through tomorrow and whatever it may hold for them. I believe that we are shown things when we need to see them... there is a reason Karen sent this to me, and there is a reason I felt so compelled to share it with you. Don't miss out on the blessing this could be for you, now or down the road.

And hug your little ones an extra time today. Or two.

Taking notice

Just another word about last night's dinner. When we were leaving the restaurant, there were alot of people waiting by the door to be seated. Over to the left was a young lady who I only caught a glance of as we passed by and dodged other people. M asked to me as we turned the corner into the airlock/entryway, "Did you see her?" I knew what he meant and said I did. I asked if she'd reacted to Braska, and he stepped back to a window between the airlock and the waiting area to try to wave with Braska, but there were too many people between.

Big deal? Yeah, maybe. But I've found it quite interesting that adults with DS, especially when with their parents, are so happy to see Braska (and us too) and they love to say hello. I am not bothered by it at all. We've had no odd situations, just really great people who have wanted to meet our little princess or simply connect with someone under that invisible umbrella that is DS. I'm always a bit amazed that they can pick her out of a crowd. Granted, I don't see the DS anymore. I mean, sometimes it's clearer than others in her face, but most of the time, I look at her and just can't find it, even when I try. I think the glasses help alot, just kind of a distraction of sorts for people. We've found that to be true, but it's not at all that we're trying to hide her. It's just always neat to me that from across a crowded room, this young lady spotted Braska and just beamed while she watched us walk by. There were a couple other kids around, but she was totally zoned in on Braska.

I wish we'd have had the chance to go back and say hello or something. I don't know how that would have gone exactly, but had I noticed her sooner, and the crowded thing not have been a problem, I would have stopped for Braska to wave, for sure. I actually had to ask M if he was sure that the young lady had DS. He said yes, but he had to look twice too. That's cool, I think. Not that we wonder, but that previous to having Braska, I wouldn't have believed that I'd ever *not* notice someone with DS, that they would seem "normal" enough to blend in. We've come a long way, and I'm enjoying the journey.

Middle of a long day

It's 3:45p, we've been home about 35 minutes. My feet hurt and I'm sore in unfortunate and inconvenient places. BUT the garage sale went pretty well, as they go.

Oh yeah, before I forget ... 11 years ago today, my husband (then someone I'd never met and only had talked to online for 6 days) drove over 28 hours from Montana to Missouri because he "just had" to meet me... time flies. Here's the rest of the story if you missed it last year.

We ended up with a TON of stuff... big stuff, little stuff, junk, real finds, and alot of it sold. Overall, the sale brought in close to $2000 total, most of that going to the brother-in-law who had the furniture and bigger ticket items, but the parents-in-law did awful darn good with their ridiculous tons of DVDs that were a big hit. Me and M did ok, as things go. I think we came home with just shy of $100, plus a car seat for Braska to use for the next 2 years (at least) in Daddy's car as a back-up and the toy that she has been loving that we've borrowed from the PT. I walked up the driveway this morning at 6:30am and couldn't believe it was sitting there. So I snagged it up quickly. Both of these were Trevor's, a friend from the in-laws' church. She and one of her friends had a sale last week, and I got a crazy good bargain on a double stroller. (I've been in denial about needing one... but I dealt with it, and now we have one.)

We had alot of traffic through there, especially for a sale this late in the year. I think it was a success. And not as unpleasant as I thought it might be. It makes a HUGE difference when most of what is there is GOOD stuff, and not just the junk we don't want. Whoda thunk it??

Now I'm trying to rest my feet for a moment, but soon it's shower time for the second time today as we get ready to head to dinner with a couple we've never met. Should be fun. M met him online at a tech-guy kind of web forum... they decided to let the wives come along too. Then, it will be BEDTIME!!! Can't wait...

Off to a great start

Braska was up at 3am in the oh-so-frustrating way she does on rare occasions, sitting up and crying in her crib. After a few tries of rocking til she was asleep and then putting her back in bed, only for her to pop up right away saying "up! up!", she went back to bed with me. As I've mentioned before, I'm not at ALL a fan of kids sleeping in the parents' bed. But when the two options are for me to sit and rock her while she sleeps or to lie down and at least rest while she sleeps, I go for the horizontal position.

She wasn't snoring, so that was an improvement over the congestion issues of a few weeks ago, but I still can't sleep at all when she's right there. I hear every sound, feel every quiver or kick, and it means no sleep for as long as she's there. I managed to get comfortable for a while, but it was short lived as I was on about 10 inches at the edge of our lovely king-sized bed. In my state of aches and pains, with Pepino constantly telling me that she is not happy with my position, this was not a most pleasant few hours, to say the least. But we made it until about 7:20am when M got up for work. Of course, Miss Slept Well While Mommy Didn't was happy, giggling, and ready to play, while I was a tad on the grouchy side.

We got up about 7:45am when her pleas to "get up" were finally heeded, and we started the day. Now it's 9:30 am, and I've changed her twice for massive puking episodes (we call them full-feed, because it's soon after her feeding and it sure looks like the whole 6 oz.), once for excessive diaper mess, and changed me once for her wetting on me while I was trying to whisk her to the tub. There are 6 wet spots on the carpet from puke/spit-up and the carpet cleaner that was added to try to help. We have two therapies scheduled today, ST this morning, and PT this afternoon. Napping is tricky on Thursdays with that schedule, so I've cancelled them for today due to her iffy situation and my lack of sleep and impatience with generally everything.

I'm sure it's just a fluke. She's not really acting sick. I think she might be working on another tooth or two. Whatever it is, it's not the way I like to start a day.

To end on a good note....it's so nice and cool outside, that's nice.

Darn, she just melted into a crying puddle again. For a girl who doesn't cry more than a couple times a month, normally, this is disturbing..... Happy Thursday.

When did October get here?!?

Ok, I get it...today. Right. It's the 1st. But still. How did that happen?!?

Maybe it's because the last 5 months have been just about the busiest of my life so far, but this summer just plain flew. But it's ok. Fall is my favorite. I love the cool weather, the faint smell of fireplaces starting to float through the air, the changing colors (which we'll get to see more of here in MO than back in IL), and the comfy clothes that allow for hiding things. Bring it on!

What does October have in store? Of course, it's Down Syndrome Awareness Month, don't forget. Hmmmmm...what else? Well, we'll celebrate the 11th anniversary of my meeting M and being swept off my feet (give or take a trip and fall here and there...ha!), a family yard sale, there's my brother's 32nd birthday, the (hopefully) confirmation of Pepino's gender, my 35th birthday (what??????), Braska's last month-birthday before she's 2, and my mother-in-law's birthday. Oh, and Halloween. Then there's 2 doctor appointments for me, 2 for Braska, and 17 therapy appointments. I'm sure there are a bunch more fun events....we'll see as we go.

Welcome October!

31 for 21 Preview

It's that time again... almost October. For me, it's always been a fave, as the most wonderful people are born in this month... like me! But it's also Down Syndrome Awareness month. (Or should we say Month for Awareness of Down Syndrome to be PC? Sorry...I'm hardly ever PC.) So as we did last year, many of us are attempting to blog every day in October, focusing at least partially on DS and how it fits in our lives, affects it... or doesn't. There are a bunch--A BUNCH--of great blogs participating in this fun thing that Tricia started last year. So check out the list at her blog and get to know some new people this next month.

As a preview, I found out about this today and thought it was pretty cool. It's worth checking out. And there are a few pics, but this is my fave...this little girl's face... priceless.

(Fair warning for some of you... every link I could find to this story failed to have people-first language. I looked. I tried to find one that did. It doesn't actually bother me, but I know some of you feel strongly about it. So I wanted you to know that I did try. :o)

End of the therapy saga

Braska's OT and PT have resigned from her team. I think this is really unfortunate, but after hearing from some insiders that I didn't even know I had in my resource pocket (you guys are so sneaky!), it's really for the best all around. They are good therapists and they'll continue to be, but I'm sure we'll find some wonderful new team members.

We've decided to take a break for the month of August since we'll be so busy. We'd actually already debated this, prior to this situation, just due to the chaos of moving and such, so it's fine with me. We'll contine with ST in the meantime. Jocelyn is just a peach of a girl, and Braska actually talked for her a little today!

Thank you to those who had helpful tips and especially to you therapists from near and far who offered a great, supportive perspective. What a great email response!!! I'm glad to know this is an isolated situation. Don't worry... we'll keep showing off our girl's progress and how she gets there!

The sweetest treat

I'm kind of grouchy. I've had a short fuse and been very blah. Maybe it's a phase of the pregnancy hormone train. If so, I hope this trip is very short! I haven't been posting because I don't like to be negative in a format that remains "for all of time....(echo, echo, echo)." And I am so blessed, that what little comes to frustrate me is really piddly in comparison. So I will simply be quiet...

In the meantime, here's something that I found this morning that made me smile. If you are anywhere near Falmouth, MA, please go buy a treat for me!

Hey DS Parents, Therapy session question

Do you guys take pictures of your therapy sessions? Videos? And if so, do any of you post them on your blogs or websites? Do any of your therapy providers have policies regarding that specifically?

I had a situation about this today, which I can't really post about here. I'd like some input. If you're game to help me out, leave me a comment and I'll send you the whole story. For those of you on DownSyn, it's on there too.

Thanks, Team!

It's a...

Baby, just one, and it wiggles. That's what we learned today from the MFM specialist, Dr. H. The due date is still iffy, in my opinion, but it'll be the first half of Feb sometime.

I was given all the ins and outs of the screenings and tests available. I explained that I'm not worried about things unless it's something that requires a change in care or delivery plan. We'll do the basic stuff and have plenty of ultrasounds.

The doctor asked what resources I found to be helpful when we got Braska's diagnosis. So I had an opportunity to talk about everything from our local group in Champaign to the blogs and forums that really made the difference for me. I let him know that I always want to be available to any practices that I'm involved in with work or as a patient if they have a situation where I can be of help. This is the office that delivers prenatal diagnoses to women, so I love that he is open to learning how to do it in a more helpful way. I told him of Braska's blog and he asked if he could write it down to share. I had blog cards with me, so I gave him a couple and said I'd be happy to talk to anyone if they ever thought it would be helpful. But often, it's much less intimidating for someone with new fears and questions to be able to simply look through a blog or forum than it is to talk to someone. So I'm so glad that we might be able to help someone get a more realistic view of Down syndrome and put a cute little smiling face with the big bad diagnosis.

Constant battle

Medical insurance issues and authorizations are my thing. It's what I do. It's been at least part of my job for more than 10 years now. I get journals and magazines and do seminars and continuing education in the field.

Even with, and maybe due to, this expertise, I get SO frustrated at how wrong some of the practices we deal with in Braska's care can get what should be a simple process. How in the world do parents do it that don't know how the system works?!? When they get an EOB (the explanation of benefits from the insurance that tells you what they pay and what they won't for a particular visit or service), and it says something is denied, do they just pay it and suffer the economic setback or do they know that there are any of 15 things that could be wrong causing that denial to be incorrect?

I've spent the morning calling our case manager at the insurance--who is little help, unlike the previous ones we've had--getting no pertinent info other than what I was telling HER. I had to tell HER how it should work and what her next step should be. Then I called the therapy location to inform THEM how to bill properly so that they will get paid. Now, mind you, I've done this at LEAST 2 times before for both these entities. I always try to be very nice when I deal with people on the phone that I know I'll be encountering again, so as not to start a bad rapport with them. But this time it was business to the point. Here's why it's denied. Here's what you did wrong. Here's how to fix it. Here's who to contact. Here's what to do next. And then I require them to call me when it's done correctly so I can follow up and make sure.

Sure, I've been a boss in this position for years, and it's not hard for me to take the demanding position, but when it's been in and out their ears with no good result, it's time to make things clear. I can recite diagnosis codes by the hundreds and I can pretty much tell you what things will be covered and what won't for several major insurances. I'm thankful I have this background in our situation, but so many of you don't! How in the world do you do it?!? I'd lose my mind... I'm close already!

Ok, I don't really vent often, but I'm just so tired of doing the work of all these other people who I'm paying to do their job! I'm very thankful for insurance, and I know the system CAN work when people will just pay attention and learn what they need to know. I can't train everyone myself! :o)

Doctor Therapists Realtor

I knew this was gonna be a busy week, but today was a little ridiculous.

9 am: Braska pediatrician appt. Just to get established and make sure she had all the right info. It was pouring rain when we left, and I'm no good at kid and rain combinations. We made it barely on time. My first concession of the day was to go out in schlumpadinka fashion. Yep, I've gone there. Capris, neat shoes, and cute top--didn't happen. Yoga pants and T was it. What has happened?!?

10:15 am: Back to the apartment. It's so darn trashed there's not anywhere on the sectional to sit down. But I feel rough, so it's plop in the recliner for me while Braska plays. Dealt with some work and emails but mostly I just sat still and tried not to be dizzy.

11:00 am: Knock at the door. The PT is here. Forgot about that one. I sent an email to find out when my appt was, but didn't get a response. Darn email keeps going to spam. Ok, welcome to disaster central. Braska did great, made some big strides with pulling up to her knees at the couch. But I could hardly keep my eyes open.

12:10 pm: Feed the kid in 3 minutes. (Thank God for tube feedings at times like this.) Rock her for a minute, put her to bed, and collapse into bed myself for a quick nap. But it doesn't happen. I can't nap. I always just race through the things I need to do and what I'm NOT getting done by resting. I get so mad that I can't go to sleep that I end up more agitated every minute. I laid there for about an hour and closed my eyes even though I couldn't sleep. We've got so much to do still today! I need to get some energy!!

1:10 pm: M comes in from work for lunch. I get out of bed. I've made no lunch obviously, so he has a pudding cup and some pretzels. Thank goodness he's not a foodie. We chat a minute. He gets Braska up because speech will be here in a few.

1:30 pm: Jocelyn comes for ST. Braska plays and cooperates some. She's not much for mimicking on command yet. But she had a good time. She likes Miss Jocelyn. M heads back to work at 1:45.

2:30 pm: We leave as Jocelyn does, heading out to the realtor's office. I had texted my sister Rachel to pick me up some food on the way to meet us there since I hadn't had a chance to eat yet. She came along to corral the kiddo while we visited several places.

2:45 pm: We met up with Sandra the realtor. Headed out on our tour of 6 places. We ruled out 3, I'm on the fence about 1, and we like 2. That's not bad overall. Houses in this price range are going quickly here, so a few that we had wanted to see had already sold over the weekend. I was pleased we found a couple standouts at this price point. It was really hard to actually walk through places that we were considering. I love looking at houses. Love it! But we are downsizing, and that's proving to be more of an adjustment than I expected. We loved our 2-car garage, but no more. We loved having 2 baths, but no more. We loved our spread out room for us and guests, but no more. It will be fine. We'll have room to be, but it will be an adjustment for sure. Not to mention the pool....... but it's ok. It really is. It'll be less for me to keep up with, and I like that. I actually was pleasantly surprised, as were Rach and Sandra, at the good places we saw. I was afraid everything would require a great deal of work, but two of the options are just about turn-key. That's important since we're trying to get all this done and moved in by 8/31...the end of our short-term lease in the apartment.

5:15 pm: Back to the realtor's office. We head home. I collapse and hand Braska to M. The local DSA meeting is in 45 minutes, but nope...just can't do it.

And from that point on, my mind races. I'm replaying every bedroom, bathroom, kitchen, finishes, carpet, neighborhood, etc. I'm betting there won't be much sleep tonight. My brain doesn't have a turn-off switch when I need it. So I pray God will show us "our house" just like he did 4 years ago, clear as day. I gleaned a few little hints today, so maybe more will come. We go back tomorrow night, me and M, so he can take a look at the top 3. My hope is for a clear choice or more rule-outs.

The new same ol'

I've had alot I thought about blogging about, but I can't seem to find 5 minutes of lucidity to compose any thoughts. How you 3-a-day-post-people do it....I'm so clueless.

Braska's got 5 therapy appointments per week now, so that in itself makes for busy. And this week we added an appointment for me today, and an appointment for her with the pediatrician tomorrow. That's alot of places to be in 5 days. Oh, and we're also going to look at houses tomorrow night, but it's very preliminary.

This weekend we spent 3 days in South County with the fam, I'm thinking we need a vacation home there already. Am I glad the drive is only 40 mins? Yes!! Do I kind of wish for weekends like this it was 10? Yuppers. I'm so darn exhausted. We had a great 4th hanging out at Cindy's place by the pool. Then Saturday Cheryl had a graduation party and we hung out some with Jerry and Nadine, relatives from Iowa, who were in town. Sunday it was back down for church and lunch before Jerry and Nadine took off, then hangtime at the parents for the afternoon. This coming weekend my brother-in-law is getting married, so we're headed south again, but they're worth it.

We had to find another place for Belle to go. She offended her host, so we found another willing party to take her. Thank you Nancy!!!!!!! I think she'll be very happy. I just want her to be happy, but I'm sure she is confused, and that's sad to me.

For those of you who like preg updates... I'm feeling icky and un-good, but nothing like the bad most of you probably deal with. Just a constant not-good that lets up for a few hours in the middle of the day. It sure makes normal things more difficult. I'm having some sleep issues, but I think they're related to exterior influences, not the tummy baby. I went to the OB today, very nice doc. She is sending me to an MFM (maternal fetal medicine specialist) next week for an ultrasound to determine when this baby's gonna get here. And of course, I'm high risk, ya know. Will be 35 when I deliver, history of baby with chromosomal issues and heart defect.... and some other stuff. High risk. Watch out! I agreed to go because I don't mind ultrasounds, but I made clear that I'm not interested in the invasive testing... what? we may have a kid with a chromosomal abnormality? No! Say it ain't so! Yeah, that would be the easy option, we've decided. We KNOW how to do THAT! It's them regular kids we don't know what to do with.

Alright, enough of this stream of consciousness blogging. Dangerous, it is. And I don't cotton to such things. Time to try to sleep again.

Mouse races

Last night it was out on the town for me. I was invited to go to a mouse race fundraiser by Adrienne. She's the leader of our local DS group in St. Charles County and I knew of her on DownSyn actually even before we moved here. So last night I met her for the first time, and then met her four friends who also came to the event. And all these fine ladies have kids with DS. Handy, eh? And I was the youngest....that's a new position for me, for sure.

This is Carolyn, Becky, Allison, Adrienne, and Jane. (Not sure of spellings...sorry if I got any wrong!) Pardon the grainy pics, Motorola Q--not the best camera, but not a bad PDA phone.


The event was to benefit a family, specifically two young boys whose very young dad died suddenly two days after the youngest was born. This is that one...Anthony, named after his dad. He has DS too! He's 8 months old and A.D.O.R.A.B.L.E.


The fundraiser was to benefit the education fund for these two boys. There were appetizers, drinks, a silent auction for sports memorabilia, and raffles for a variety of prize baskets. I really hooped it up, and got a PITCHER of Diet Coke. Yep, that's right. Watch out world.


And here's the mouse race part.... (I'd never heard of such a thing prior to this. But apparently it's a "thing" around here. Must be like toasted ravioli.) There's a guy in some goofy get-up that's kind of being the mouse DJ or something for the night. There's a mouse roulette wheel on one side, no pic of that, where the mouse runs around and where he stops, that person wins. Yeah, I didn't go for that one. But the main event was the 6-round mouse races. The mice start down on the left by the numbers, then they turn the gate and some run and some just sit. It's pretty silly.


They run 6 races, then the winners of the 6 run the 7th for the big winner. People bet on the mice, who of course have names of all varieties. In the 5th race, I chose Speedy. That's him #1. And that's the mouse DJ guy striking a pose.


And there he goes, Speedy wins!


This was my proof of my bet. I had Speedy in lane 1 for race 5. I ended up winning 5 out of the 5 races I bet on. Pretty silly. Unfortunately they marked my slip wrong on race 6, but oh well. I don't know how much money I won, since I just let it all go to the fund.


It was an interesting evening. Not the most fun ever, but it was nice to get out. I still can't quite understand how this kind of an event can be such a big deal around here, though.

Liquid baby

If Braska continues with the eye watering and nose running and rattling wet cough, she's gonna just soak into the floor and disappear I think. That girl's gooey. Now, granted, she doesn't drool, even now, and that's good. Drool gets to me for some reason.

The good news is that she slept better last night thanks to our pals ibuprofen and benadryl. All night. We all slept all night. How spoiled we've been!! Let's hope it continues, though.

We saw her new pediatrician yesterday for a quick meeting. I like her, and I think she'll be willing to do whatever we need for Braska, so that's what's important. We actually go in tomorrow for a before-the-weekend check on Braska's cough, but we'll see her associate since she's out.

BTW... Stay tuned for the return of Random Questions next week... are you ready?

A few winks

Last night Braska had some trouble initially, but M was nice enough to take her so that I could go to sleep, and he returned to bed sometime a little later after she was snoozing in her bed. She slept from about 11 to 4:30am, which normally would be a bad night for her, but after the last few, that's pretty good. I brought her in to our bed at 4:30am hoping she would snuggle up and go back to sleep, even if I couldn't. She was so restless, but she slept for bits here and there. She just thrashes around with her eyes closed like she just can't get comfortable. For her, that's especially weird, because when it's time for bed, she's like a stone. She zonks out in the position she lands in and doesn't move much at all.

She has had two short naps this morning, one that I got to snooze during as well. The other was on my lap, so I just managed to get some work-work done with one hand since the laptop was next to me on the couch, so as not to disturb her. We're headed to have a consult with a possible new pediatrician today (thanks Julie!) in about 45 mins to meet her and discuss Braska's history and see if we feel comfortable with the match. The really good part is that her office is less than 1/4 mile from our apartment, super handy, so that would be a nice switch, for sure.

Thanks for all the tips on things to try with Braska for some comfort. I have had her on Tylenol regularly, but no Benadryl. Don't know why I didn't think of it. Oh wait, she's not been sick in 18 months...that might be why! We're getting some today, though.

OH! And the other news... she has 5...count them...5 teeth coming in right now!!! That could be the problem. I only knew of 2 til I did some forceful checking this morning. Ouch!

Sleep, I miss you

Braska's been running a fever the last few days, on and off, but getting up to 100.4, which is way more than she's ever run for teething. She seems to be ok for the most part, a little snotty, but just a tad, and sometimes clingy, but also minimal. The problem lies in the sleeping, or lack of, that she's doing.

Generally, she's a peach in the sleeping department. When it's time, we say our "night nights" or thank you prayers for our blessings and ask for good things for those around us and far away, then when I say "Amen," she dives for the bed. This is the routine at naps and night. But the last few nights, she's been not wanting to go to bed, fussing (in a pathetic hoarse voice) and waking up numerous times just screaming. Last night she ended up in our bed, which is a big no-no in my book, largely because I can't sleep a stitch if she's in there. And that was the case. When we tried to put her back to bed after she fell asleep, it never lasted.

Today she did nap for a while, and I snuck one too during that time, but tonight's not looking to be any better. Big bummer. I'm not feeling great myself...scratchy throat and such. I just want to sleep all night. It's not gonna happen, I can feel it.

And, as if on cue, she just woke up crying again... and it begins.

I think HE can dance...and more!

I'm a big fan of So You Think You Can Dance on Fox. Last night we were watching it on the DVR and when this young man appeared, I stopped and said, "No way!" Both M and I stopped what we were doing and watched...here's what we saw.



After it was over, we we grinning, talking about how great his speech was and all kinds of what I call "geeky" DS stuff (therapies, diagnoses, characteristics, etc). Then we both said that the blogs would go wild in no time. This is just the kind of thing that we like to see, so why not post it?!?

This morning, there are entries on a few forums I watch, and Meredith is the first blog on my reader to post on it. I'm sure more will follow. But all blogging silliness aside, this guy is really neat. He is a neat guy, DS or not, but I personally believe that at least part of it is because he IS who is IS and has learned to be more than ok with that. That's all we want really. Go Brett!!

The Reason

Moving is no fun. Packing and unpacking is not enjoyable work. Leaving a life and a place we loved for a place we don't really know is scary. Missing friends and coworkers we liked so much is painful. Giving up something I'd dreamed about and never thought I'd actually have in my backyard is really hard. (I love this pic, just had to share...so clear and blue.)

Why did we do it? Why would we up-end our whole life? What could possibly cause us to do such a thing?

Nuff said.

Heading south

It's big news time--We're moving to St. Louis. Well, actually St. Charles, just NW of St. Louis. It's where I lived before we got married 7 1/2 years ago and I moved to Champaign. It's where M got a new job, just finalized yesterday after a whirlwind process that only began late last week.

It's a bittersweet time, as we will miss Champaign a whole lot. This is the longest I've lived anywhere in my life, and that's something. It's been very good to us, and sometimes it's been a little cruel to us, but that's life in this world. All in all, I will think on my time here very fondly.

We are excited about being close to family, close to friends in that area, close to Braska's doctors, eliminating the trips down for appointments and such, trading a 3 hour drive for about 30 minutes to downtown. The new job is very good, and it seems like it will be an easy transition for M to slide right into. He starts in 2 weeks, so the chaos will be overwhelming for a while, but in the end, I really believe life will be much simpler and that's a BIG deal to me.

Big kudos to my husband for making this move. He is not a fan of change, to say the least, but he is putting his family--specifically Braska's best interest--first, and for that I'm immeasurably grateful.

More details will come as we know them. It's all so very fresh still. So far things have been miraculously smooth, so we know this is the right path to take.

(While I blabber on, here's how M announced it.)

Peek at tomorrow

This weekend we were at my in-laws' place for a very quick visit. We went largely for a housewarming for Cheryl and Ethon, which was Sunday afternoon. They have a pretty darn cool place, so yay for you guys!

Sunday morning pictures are normal, we do them alot. This week, before we left for church, Carole took a few pics of my little poonchin. They didn't all turn out great, as she kept making funny faces and moving at the last second. I stole them off her camera for my collection, and when I looked at this one I just kind of stopped.

It's not any super great picture. It's cute, but hey, how could it not be? She's waving at herself, that's the reason the hand is up. But that's not what I saw.

Go ahead, click on the picture. Can you see it?

I don't see Down syndrome. I don't see a feeding tube. I don't even see a tough cookie, open-heart surgery survivor. It's not my favorite picture of her ever, but I can't hardly stop looking at it. This picture, to me, is a picture of what's to come. She looks less baby-like here. She has a whole different look to her, which I think will be amazing to compare to a 2nd grade picture or something in a few years. I can't explain it, I just see our future there. I don't think she really resembles either of us, now or in this pic, but I do see more of herself coming out in her face here. There's something grown-up about that little smile. I just can't wait to see how she grows into her personality. She's going to be one great little girl.

New Fave-o Site

Get a cup of good hot chocolate, put on your comfy clothes, and settle in with some non-rushed time to check out Dan Drinker's site. I can't even tell you how much I love watching these videos and reading what his family has written about him. I feel like I want to tune into the Dan Drinker 24-hour channel or something.

Dan is a young man with DS who is living and loving life, and his younger brother Will captures much of it on video. It's priceless, in my opinion. I just love it. Check out the blog, watch some videos, tell them that you've been there. I wish this guy lived near me!

The most recent post, about Breaking Up with Christine, is funny and poignant. Here's a couple of my other favorite videos so far... I've still got more to watch!
His 7th Prom
A Basketball Date with Sarah

Braska: Buddies and braids

Last week on Monday, Daddy came home from work with a present for me! A coloring book and colors! We practiced coloring for a while before he had to go back for a special work meeting.



Since Daddy had a meeting, Mommy and I went to eat dinner with Jack and his family and some of his friends. It was fun! Jack thought there was alot of talking, I think.



I found a new thing I like alot... Mommy says it's called mashed taters and country gravy. I ate alot of bites of it!


Mommy did a new trick with my hair last week, too. She said it was french or something.


"What do you think?"


"Huh? Really? Gee, thanks!"

We went to see the guy that gave me my Steps. He was checking to see if they still fit ok. And they do, for a couple more months, he said. I waited for him like a big girl, but I kept looking to see if he was coming soon.


When Daddy got home that night, I told him and KiKi all about it.

On Thursday night, Grammy, Papa, Auntie Julia, and Uncle Ryan came by. I sat with Auntie Ju and watched some TV.