Monday, December 31, 2007

Amazing story

Recently, I've been visiting the DS Forum on iVillage. The other day there was a post from someone that I thought was especially impressive. I asked for permission to share it here. Take a minute to read it and please be praying for safe arrival of the little one.
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Here's our story:

Part I
Young couple elopes to Vegas in Oct 2005...what happens in Vegas dosen't't always stay in Vegas as we conceived little Emily Grace there. Super excited about our new little girl soon to join us. Find out after quad screening we have elevated risk for downs. Shocked-we're only mid 20's (big misconception that it only happens when you're over 35) Hold out hopes and stay positive. Have level II found several soft markers. Still hold out hope and have amino. Found out week later Emily does in fact have Downs. Mourned the loss of our typical child dreams for about one day and then look at the blessing that we've been presented. Our little one would teach everyone else tolerance. Go for another level II at 20 weeks on St. Patricks Day 06 to check on development. Emily's little heart wasn't beating. Devastated, went through labor and delivery.

Do the testing just to be on the safe side-this must be a fluke as it is in 99% of the case. Nope, moms a translocation 21 to 14 carrier. Who would have though! 4 in 6 chance of each pregnancy after resulting in Downs.

Part II
Find out where having another little one. Girl again. Finley Hope. She's not looking to great from the start. Really behind in development - several issues. We don't do an amnio this time because we know moms a carrier of Downs so pretty sure this little tike has it too. We hold out faith but again at 24 weeks 1/12/07 this little one passes on to be with her sister. Back to labor and delivery to go home with no baby.

Part III
So now what do we do. Moms trying to get off the 40lbs from the first two pregnancies. We think about going the scientific route and do IVF but I'm too inpatient. "Come on honey" I tell my husband "3rd times a charm". Well first time we try it's a ringer! Pregnant again. We have no problem conceiving you see just having a healthy baby. So we are on this journey again. Hoping and praying that this time we will have a different outcome. For the love of Pete I've been pregnant for the last 3 Christmas's in a row and still no baby. I think I'm due right! We know that this little guy, Grant Thomas, has DS, but I don't care. We will love him just the same. Keeping the faith yet again for a healty guy to arrive 5/6/2008.

So there's our long story. Pray for us that little Grant makes it! I look forward to sharing lots of tips and advice with you all! God is love!

Saturday, December 29, 2007

Pack up, move out.

This morning we packed up our stuff (6 trips up and down the stairs to the car...ugh), vacuumed the carpet to look spiffy for when Rachel returns, and headed out. Well, not out exactly. I took Braska to get her glasses adjusted, amazing what such a little person can do when yanking off her glasses with one hand. Then I decided to go down to my in-laws' place to pick up a few things we forgot when we left Tuesday. And since I was down that way, I went by a hair place I found when we were there last weekend. They had time to get me in, so I dropped Braska at her grandma's and went back to get all fixed up.

Here's the goofiest face ever, I think...mid-foil processing.


Here's a few afters...it didn't really work to take one straight on, in order to get the full effect of the color outcome.


There's a bright red and blonde going on in there.


An interesting thing about the stylist who did my hair...she asked about if I had kids, etc. I chatted about Braska and her stuff. The stylist had a little girl about 6 weeks older than Braska. She asked about knowing about the DS, how she thought that only women over 35 could have babies with DS, etc. There were some bits of info I was able to get in there, and that's always good. She looked at pictues of Braska from her one-year shoot, and she said, "Awww, she doesn't even look like the typical Down syndrome kid. I don't see it very much at all." I had that little moment where I almost instinctively said, "Thank you," in response to a compliment, but then I didn't. I wasn't sure what to say, so I just said she was our little peach and we thought she was pretty great. Another case where she didn't mean anything by it. I ended up taking Braska back by there after I picked her up to say hello to them. Thought I'd use it as a little seed of awareness.

So my little vacation is over. It was good to have a few days. I got some journaling done, which I've been slacking on in a major way. I'm just no good at writing things with an actual pen and paper. I'd rather sit down and type. But that doesn't work in the whole process, apparently.

I got a bit of cross-stitching done, some good quiet "be still and know" time, got in some great programs from KSIV...yes, I actually choose Christian talk radio programs over other options. There was also plenty of HGTV and Food Network, of course. Those are my normal favorites. But there was no cooking, unless you count tossing some chicken nuggety things on a cookie sheet and into the oven. Surprisingly, I got a bit of laundry done, some cleaning, and I even changed the direction of the way her dryer door opened...something that should have been done 16 months ago when she moved in. All in all, it was good, mostly just time to have no interruption except for Braska's requests to be moved from one play venue to the next. I got some good pondering in, some handling of issues long overdue, planning the next few weeks and what needs to happen in them, preparing for what may be some rough seas ahead, and I feel pretty much ready. That's saying alot for me...feeling ready almost never happens.

When I left this morning, this was the view...the sun had come out, the fog of the last few days finally lifted, and it was time to get on with things. I felt that was pretty symbolic.


Thanks, Rach, for letting me borrow your space for a few days.

Thursday, December 27, 2007

My vacation home

This was my view this morning as I stepped out onto the balcony.

I will most likely never have a real vacation home, and that's ok. But when the stars align just right (or my sister goes out of town), I have access to the next best thing...a super sweet condo with high ceilings, comfy sofa, wireless internet, a little granite and steel, garden tub, laundry room, and plenty of very large TVs. Sound like a decent resort, right? And the cost... can't beat it, no way, no how. Little sis has come a long way.

So why vacation at this time? Well, we were here (St. Louis metro) for Christmas, went home that night, and then turned around and came back, just Braska and me, the next morning. Braska's g-button stoma site was looking a little concerning to me, having changed some in the last few days, so I called her GI and they agreed they needed to take a look. So on the road again we went. Since I'm back again and Rachel's gone till the middle of next week, why not have some free time in my old stomping grounds? Braska doesn't have therapy during this time anyway due to the holiday weeks. I can work from here, which I've been doing and actually keeping up. Woo Hoo! Even though it's a big complex it's surprisingly quiet. Lots of young well-to-do professionals who work alot and seem to play elsewhere. When they are here, things are still quieter than our neighborhood. I'm still surprised.

Tonight we went to my brother's house for dinner and visiting. I hadn't been to their house since the wedding...actually the last time I was there was Easter weekend 2006 when we made our big announcement.

We'll be here til...well, who knows. I don't think anyone has even noticed we're gone yet back home. Rach comes home next week, so we'll get booted then, if we're still here. For now we'll hang out, maybe see some friends, and enjoy our little resort.

Wednesday, December 26, 2007

Another one in the books

It was a fun weekend of family frivolity. We have a picture to prove it. If you need further proof, check out what Braska or Muncher had to say about it.


Monday, December 24, 2007

Wishing you all a very blessed Christmas!

Hope you all have a wonderful day with family and friends!!



Friday, December 21, 2007

Glimpse of the future?

I don't live in St. Louis. I used to, and I hope to again someday. But I do receive email newsletters and such from the Down Syndrome Association of Greater St. Louis as a resource and to familiarize with what they have going on. Today I got the Friday Blast email, and it had a note about St. Louis Life. St. Louis Life is a new residential facility and program for young adults (18 -30) with developmental disabilities in O'Fallon, MO. I just finished looking through their website and watching the video tour of the site. It's beautiful! What an awesome place and program!

I have no earthly idea or way to know where we will be, where Braska will want to be, or what will be happening in our lives when Braska gets to this stage in her life, but I just love that something like this is out there, providing a great place for people to spread their wings a little. That's encouraging to me. Check it out.

ALSO, in the info from DSAGSL was a link to some pics from their Young Moms Luncheon. It so so so makes me want to get to be in that club. A bunch of young moms all with young kids with DS chatting about what's up? It's like blogging in person...wait, maybe I should think about this. Anyway, here's the link to their pics including some adorable little kiddos. I would love for Braska to get to have so many little buddies.

Thursday, December 20, 2007

Lost bits

There have been so many times in the last couple weeks when I've thought of things I want to talk about or just throw out there for fun. I need to start carrying a little notebook around with me in order to jot them down. I could put them in my PDA/phone, but I'm not so good with the texting even if it is full keyboard. So here's a few semi-random things that I meant to give some time to... aren't you lucky you stopped by today??
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December 14, 2006, the day we brought Braska home from the hospital...finally. Then and now. I hope to try to recreate this pic every year. It's the first one after the day of her birth with she and I together.

We've come a LOOOOOOOOOONG way, baby....you and me both.
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I watched a show last week--I won't mention it or link it because I don't want to even accidentally be blamed for endorsing it--that I normally purposefully avoid even though it's watched in the other living room in our house. I watched it because it advertised having a DS character (this was not the ER episode), and I wanted to see how they dealt with it. I wasn't all that impressed with the actual storyline, but there was an exchange between two characters that I thought was interesting.
He said, "What would you do if you had a kid with too many chromosomes?"
She said, "How do we know that the rest of us aren't just missing a chromosome?"
(Might not be perfectly verbatim...didn't write it down right away.)
Interesting.
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Some things aren't funny. This is something I've been putting together in my mind for some time, and it'll have to wait for further elaboration. But it's important to me...humor is good, laughter is great, but some things just aren't funny and shouldn't be laughed off "just because"...family or not. I've seen so much of that kind of laughing do serious damage to whole lives.
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On Saturday, 12/15 we joined up with a couple small groups to do some caroling at a couple nursing homes here in town where members of our church reside. I haven't done this in many years, but it used to be part of our family Christmas tradition when I was younger. Granted, we are not actually part of either of these small groups from our church...we're kind of like the honorary small group members who don't actually attend small group. I wish that were different, but baby steps... Our friends are super enough to include us on social occasions so we jumped in. (My husband would say he was more dragged in, really. See his take on the night here.) It was fun to be with our buds again...we don't get together nearly enough anymore. And all the kids were at sitters, so we were fancyfree....well, as fancyfree as you can be on the churchbus visiting elderly and singing Christmas carols. But it was good. It snowed the whole time as we were in the middle of this past weekend's snow storm. It made for a nice setting.
A few pics of the evening...smiles on the bus. There were goodies and hot cocoa circulating to keep us happy and warm.
After we got done, we went back to the church to hang and eat more goodies. We borrowed Oasis, which is the teen auditorium area. It's pretty darn nifty, I say. Booths on the side, cafe area, with air hockey, video games, and such on the second level.


The girls gabbed as the guys played, for the most part. This is Jennifer S, me, and Karen K.

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Today was a pretty good day. I felt more like myself today, getting out, talking to people, interacting with adults. Here's how it went...
7am--Up, shower, get Braska up and fed, get us both dressed and ready.
7:45am--Leave the house!! Take Belle to the groomer.
8am--Use the time on the north side of town to run errands. Post office to get stamps, Target to return a gift, Wal-Mart to get things we need, gas station to fill up before weekend trip.
9:20am--Return to pick up Belle and head home.
9:30am--Check email, reply to work issues, finish a project.
10am--Freshen up and dress Braska for going out. (Previous outfit was for errands. Pathetic, I know.) Prepare diaper bag and collect Braska's stuff for feeding while we're out.
10:45am--Leave house heading for lunch meeting.
11:10am--Arrive early at the Olive Garden. Make a few phone calls in the car while I have a minute.
11:20am--Go in, get seated, etc. Have nice lunch w/good friend/work contact. Fed Braska while there. (I'm getting used to doing her tube feeding in public. I don't even notice if people look anymore.) Did some business, got caught up, and relaxed a bit over soup and salad.
12:50pm--Head to the mall (big deal, I NEVER go to the mall). Managed to get gifts for BIL#1 and #2. Found a clearance pair of boots at Payless, stood in line for Santa, got pics of Braska with the very nice St. Nick. (Soon to be posted on her site. Gimme a day or two.)
2:20pm--Arrive home, feeling like I actually got out, and loving it!
The rest of the day was a bit less eventful, but that's ok. I got out. I had adult conversation. Man, I miss that something fierce.
I didn't do a dish, clean a room, unload the dryer or any of the many other things I needed to do, but I still feel good about the day.
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While I was out today, getting gas, a guy came out of the convenience store with a brown paper bag, obviously holding one of the tall beer cans. (Yeah, I watch Intervention. That's how I know. Disturbing, yet very enlightening show. I've learned alot of helpful things that I've had a chance to use, but that's for another time.) He gets in his car, closes the door, fiddles around with some stuff, then opens the beer can in plain sight, downs quite a swig, then takes off. I don't like it. Not at all. He is putting my child at risk, and I don't care for it.
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Target is expensive. While I was there today, I thought I'd use my newly obtained store credit to get the things I had on my Wal-Mart list. So I went to check them out. Now I don't usually know what anything costs. If I need it, I just get it, so I can't tell you how much a pound of meat is or what my deoderant costs or anything like that. BUT I do know what diapers and Braska's liquid food costs. And wow, even the Target generic brand was 15 to 20% more than I pay at WM. All the items I looked at were a few dollars more expensive. I just couldn't do it. Even though it was "free money," I couldn't do it. I didn't think I'd become this person, but I guess I have. Looking at price tags. Guess it's about time. I don't know how all you Target shoppers do it.
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One last thing for now:If you're looking for more wit and sarcasm than the normal person can provide, check out M's blog. He's been posting again after a bit of a hiatus, and they're worth checking out. *Disclaimer (made with love):I cannot be held responsible for the content of that blog.*

Saturday, December 15, 2007

4 books in no time

When we travel back and forth to St. Louis, we like to listen to audio books on CD. Through our Thanksgiving "tour" and a little time listening in town and some in the house while I'm cleaning the kitchen or something, we've covered four books.

Here's the list...
King of Torts by John Grisham

It Ain't All About the Cookin' by Paula Deen

Vanishing Point by Marcia Muller

Fingerprints of God by Greg Iles

That's impressive for me, as I don't read fiction at all...but in the car it's good. We generally forget to pick up the books before we leave, so we swing by the library on the way out of town and I run in to grab 4 or 5 options that look interesting in some fashion. I did pretty well this time.

King of Torts was interesting to follow, and we kind of "called it," figuring out the order of events at the end, but that's ok. Paula Deen's book was one I listened to while M was sleeping...he wouldn't be going for that in his waking time. It was pretty interesting, I must say. Not what I expected; quite a colorful past she has. Vanishing Point was one that I've done in town and at home, but it's been a good way to pass the time while cooking or cleaning. And Fingerprints of God is a little weird and seems to have two stories in it that I'd prefer to be separate. We've not actually finished it yet, as we started it on the trip, but it's 11 CDs! So we've been doing it in little bits at home, but we're rarely in the same room in a situation that allows for listening to anything other than the TV. I will probably renew this one and we'll finish it on the Christmas drive.

Some people read this many books in this amount of time, but I'm pretty impressed that I can say I've "read" something lately, something other than my typical relationship helps, motivational/spiritual helps, etc. Pick up an audio book CD before your next trip!

Real snow!!

Finally we got some actual snow, the kind that comes down all day and night and is so darn pretty to watch! Granted, we had to drive in it last night, and that was no fun. Even in town it was pretty hard to see and navigate with the heavy snow and the wind, but we made it back home.
A funny thing about this snow storm...my husband and I discussed last night how our church would notify the 1200+ people who would normally be there on a Sunday that there would be no church if they chose to cancel services. We weren't sure. Maybe a cancellation list on a local radio or TV station? We found out this morning...I got an email. (The wind is bad at our church, as it sits in a wide open plain in the middle of corn fields outside of town, so when it snows, it's always way worse at the church. But this is the first time they've cancelled in the 6 years we've been going there.) And to add to that, I also got a text message from our old church, where I occasionally still show up a couple times a year. Ain't technology fun?

Our court Saturday morning.

The court Sunday morning. About 8 inches of snow.(Notice our neighbor has already shoveled his drive. He's good.)


Our drive and walk Saturday morning.
Our drive and walk Saturday afternoon...that's the husband beginning to shovel.

Our walk and drive Sunday morning.

Anyone for a swim?

A very cool snow thing... when we arrived home last night after a Christmas caroling party at about 10:40 pm, our neighbors were shoveling our driveway in the midst of the heavy snow and wind. We turned into the court and I said, "Someone's shoveling our drive!" As we got to the drive, we saw who it was. The neatest part? They said they thought we were in bed asleep, and they were doing it to help out. They wanted it to be an anonymous thing! That's cool. They are the best! I made up a container of the goodies that we came home with and gave it to them as a thank you. How blessed are we?!

Wednesday, December 12, 2007

Road trip follow up

The one-day trip that was supposed to fill last Thursday spilled into Friday. When we came out of the doctor's office to the choo-choo bridge (That's what we call the big glass walkway from Children's to Barnes Hospital and the parking garage...it has a train running all around it way up high.) it was snowing and already getting dark. I called my dad for an up-to-the-minute weather report to see how things were looking on the route toward home, and it was quickly determined to be more risky than I care for when attempting the trip. Instead we headed south a bit to the in-laws' place. (Have I mentioned how handy it is that they're just right there?)

It turned out good that we stayed til the next daylight, as the road home was littered with cars, semi trucks, and a few toppled SUVs in the medians and ditches.


It wasn't that there was so much snow, but there was a layer of ice on everything except the main road itself. I can imagine that in the dark and drizzle, it would have been quite difficult to stay between the lines.

When I pulled into my court, it was slip-slidey time. I even had a little spin out trying to get up what little slope is my driveway.


It's good to be home, warm, safe, and cozy.

Monday, December 10, 2007

Shop talk

Saturday I was at Wal-Mart shopping for a few items, more than one of which was in the baby section. I've always thought that when people are actually shopping in the baby section, they seem to slip into a friendlier mode, talking to others who are also in their world, discussing ages, genders, and latest milestones of their kids.

As I was standing in front of the shelves full of baby foods, cereals, and juices, there was a lady who came up from my right side. She was talking to the man a few steps behind her who was dutifully pushing the shopping cart piled high with their coats and scarves. There was no kid in sight. I should specify that she was talking LOUDLY. It was almost as if she was unabashedly inviting people to stop and listen to the earth-shattering things she had to say. As she walked up to where I was looking through the Graduates items for Lil' Crunchies, she stood about 12 inches from me and sighed very loudly. She said, apparently to the man, although she didn't direct it toward him, "I just WISH he would eat! What do you think we should try this time? Or do we just give in and let him eat the same two things." The man made no response, just followed as she passed behind me and then stopped on my left side. She continued, still sounding like she was trying to share this info with someone a few aisles over, "Nobody gets how frustrating this is! I wish we could go back to when he just took a bottle. "

Since I hadn't found what I wanted yet, I considered walking around the next aisle and waiting for them to finish and leave before returning to search some more. But that seemed silly. Before I realized I'd decided to say anything, I heard myself blurt out, "I know feeding can be stressful sometimes." "Well, WE are trying to get him to start taking some solids, and he only wants a few particular ones," she replied. "It's been like three weeks, and I don't know how long I can take this!" She had such a martyr's air to her, at least I think that's why I said, "Aw, that is hard. My daughter has a feeding tube." I surprised myself, let me tell you. She hesitated for just a second, and she said dismissively, "Well I guess I should be thankful, then. "

Thank goodness, I spied those evasive Lil' Crunchies, and grabbed them up. I said, "I'm sorry it's frustrating for you," smiled as sincerely as I could, and I walked away.

It got under my skin, and that surprised me. She had no way to know what feeding issues meant in our house, and I'm sure they are just as frustrated with their particular set of circumstances. There was just something about her more-distressed-than-thou air that was too much for me. It was almost like she wanted some kind of medal of courage for hanging in there, and if she did, I'm sorry she felt like she needed to look for it in a Wal-Mart aisle. I gotta say, that poor guy looked like he'd been hearing that song for a very long time.

Saturday, December 8, 2007

It's a small internet

On Thursday I received an email from a senior editor at Consumer's Digest. He said he had been Googling for a story about people who have used a cleaning service, and apparently he happened upon this one. How weird is that? He asked if I'd be interested in talking to a reporter. I was in St. Louis, so when I checked my email that evening, I replied that I would be happy to chat with a reporter. He wrote back to tell me who would be contacting me.

So the reporter called today. She was super nice, and we talked for almost half an hour. I just talked about my experience with Merry Maids and why I stopped using them. The bottom line on that is this...Since you have to have the clutter put away for them to clean, it wasn't worth the price to have them come and basically just wipe down the shower walls, kitchen sink and counters, dust, and vacuum. I'm not trying to be derogatory toward them, but in my situation, it wasn't what I needed. I need someone to come in who knows where I keep my kitchen stuff and will put away my laundry...that kind of thing. I need a mini-me, really.

The reporter's going to let me know when the story or report or whatever runs in a few months. I'll let you know.

Thursday, December 6, 2007

On the road again

I try not to repeat post titles, but this one is destined to be a fave. I can't believe I've circumvented it for all this time already.

We are headed for St. Louis again today. We're going to aim to do a one-day trip which means 3 hours down, get glasses at St. John's, then to Children's for swallow study and visit with Dr. R to check on the g-button. Then we'll race home to try to catch the Bears/Redskins game tonight. (Yep, that's right, we get NFL Network. Sorry to those of you who don't.)

God give us travel safety, good visits, great people to work with, and help Braska be in good spirits. Amen.

Tuesday, December 4, 2007

First evening snow

I love snow. When M got home from Tuesday night MTG with the guys late tonight, he came and said it was snowing. I got all silly and did a few jigs after he opened the blinds and I could see. This is my view...I could watch it all night. We probably won't get much more than 1/2 inch, but it still counts in my book.

Multilaptasking

I didn't accomplish nearly as much today. This is a peek from my perspective for a slice of my day.

That's Braska on the left side, Cede (say-dee, as in Mercedes, her full name) on the right side, Belle on the foot of the recliner snoozing on my leg, and my computer, obviously. And yes, I'm still in my PJs in the middle of the day. Perk of working at home. Funny as it is, this is not really a rare occurence in a typical day for me, except we don't always get to have Cede for a visit. Believe it or not, I did get some work-work done during this time. Yeah, I'm that good.

Monday, December 3, 2007

The Raisin Bran Life

Just finished making dinner. Like with ingredients combined to create parts of a meal, all together making what most people might call "dinner" or "supper."

Here's the thing. I don't cook. Now, mind you, it's not that I *can't* cook, it's that I just simply don't. Why? Because I'm married to man who doesn't eat real food, and I have a daughter who also doesn't eat. And I got tired of cooking for one (me), usually after I had "cooked" for one (him) in the form of mac n' cheese or some such boxed item. SO...therefore, I don't cook.

I would be happy to live on Raisin Bran, even a generic. Yeah, that's how far I've fallen. When M is busy or it's just me and Braska, I practically do live on it. Throw in a Slim Fast shake here or there, and I'm good for a long time.

I used to cook. Even when I lived alone after college, then when I had a roommate, and even at the very beginning of our marriage, I did actually cook. But when I learned that my husband preferred, yes that's right...preferred Hamburger Helper to homemade dinners, I took the easy way out. It eventually slipped even further, as now HH is a "real dinner," as opposed to things like mini-tacos in the toaster oven, nachos, grilled cheese, and frozen pizza. While you're shaking your head, realize this....he actually LIKES this stuff, at least as much as he likes any food. He doesn't like to eat anything, really. He says that eating is a hassle, and he's jealous of Braska's ability to receive sustenance without putting forth effort. He even talked of seeing what it would cost to do an elective g-tube. Yeah, crazy, I know.

He likes turkey, if it's pulled/shredded and dried out about 10 minutes then salted. He will eat lasagna sometimes, tacos usually, chili occasionally, and chicken bits here and there, that's chicken breasts cut into small pieces or pulled then cooked again with seasoning until they're pretty dry. The hard part, really, is this... even food he "likes" are not always acceptable. Like tacos could be considered a favorite, but it is possible for me to have all veggies chopped, meat seasoned, and shells warmed and he'll walk in from work and not want tacos. Or I could make homemeade lasagna, one of my best offerings, which he does like, but after spending all the time to make sauces and layer and such, it wouldn't be a surprise if he didn't feel like lasagna that night.

SO in order to avoid such things, I've just gotten in a pattern of not planning at all. That's hard for me, as I am WAY a planner. Dinner time is the old college style "what do you want, I don't know, what do YOU want" kind of thing. Then I stand and look at a bare fridge and sparse pantry and give him options of mini-ravioli, beef ramen (which he actually CHOOSES sometimes), or popcorn. It's a sad place we've come to, but he really doesn't mind.

I, on the other hand, have fantasies about dinner time. Meals planned out ahead of time so that I can order my day appropriately and shop more efficiently. It's when we set a crock pot of beef roast and veggies on the table with rolls and salad. We sit down and chat about whatever comes to mind, things of the day, what's new with the kiddo. It's comfortable and relaxed. Even after 10 years, I still have that dream. Is it any wonder that we have a child with feeding issues? I don't think it's a coincidence...and the speech/feeding therapists that we've seen don't either. They keep trying to get us to sit at the table and include Braska. But our dining room is generally just a walkway from the hall to the kitchen. I keep thinking I'll do it with her, just us two, even if it's not a group thing, but I haven't. It's just easier to stick with the norm...catching up on DVR shows while I eat off a TV tray and he eats at his computer across the room. We're not eating the same things, so we don't usually even eat at the same time....well, sometimes that works out. Braska usually is already done with her 5 minute straight-to-the-belly dinner before we start. Then I fix whatever he's eating, then I decide what I'm going to eat and I make it.

Wow...didn't mean for this to become all about our eating, but it is kind of interesting, or pathetic maybe. We admit it. We're not deluded into thinking this is the right way, it's just survival on my part, and it pretty much the way he's always known.

So anyway...back to tonight. I have been very upset at the state of things and how bad they've gotten. Our house is trashed, like the worst it's ever been. This is completely unacceptable to me, but thankfully in a way, M doesn't mind. He never says a word about it... so at least I'm not being hounded. That's a good thing. But I don't like it. I don't like that we've been doing take-out too often, that we haven't been actually eating food, non-boxed. So today, after a frustrating therapy session that made me feel like I would NEVER get things right (not the therapists fault, she's good), I decided that I was going to get something accomplished today. So I started with the kitchen. I always start there. It's the one place I can dig into and actually finish. And when it's done, it looks so great.

Since I had a clean kitchen, I was more in the mood to put forth an effort to make something. So I decided on chicken, rice, and salad. This is on the "usually" list of acceptable things. We haven't had it in a while, so that makes it a better bet. I went through the process of the chicken (thawing, dicing, cooking, seasoning, cooking more until dry) then I saw an onion. This is rare because I don't usually buy produce because it always goes bad. M hates onions, so I got an idea. Why I thought of this, I do not know. I decided I'd make my own onion rings. I LOVE onion rings. I don't remember why I bought this onion, but who cares. I did a quick web search for batter recipes and there I went. I managed to keep an eye on the chicken, start the rice, chop the salad veggies, make the onion batter, slice the onions, and get them in the oil all in stride.

Man, they were good!!!! Check out how pretty they are!

In the end, M had a nice dinner of chicken bits, rice, and salad, followed by vanilla ice cream. I had part of a chicken breast, tomato, and onion rings! Now that's dinner!

I'll hold onto my dinner dream. Someday I may get there, but I'll not hold my breath. Raisin Bran will continue to be my friend, but at least for today, I accomplished a few things that made me proud.

Thursday, November 29, 2007

Better late than...later

I'm due for a post. It's time to put up some kind of witty story or interesting idea or thought-provoking question. But I don't have it. I mean, not right now anyway. I spent a long time putting up info on Braska's blog, and I don't have anything left. Maybe it's because I'm all congested in my nose and breathing with my mouth open and I just want to go to bed. Maybe not...but either way, I'm not worth much for the moment. So I'll spare you further rambling...
here's looking forward to a fresh start tomorrow morning.

Monday, November 26, 2007

On one hand...

We're ending day 6 of a 7-day family/friends tour of Missouri. There are alot of paradoxical elements to family visits.

On one hand it's great to visit and kind of relax, but on the other hand, we're ready to be home and in our own space.

On one hand it's nice to get away, spend time in the car together, and listen to some good books on CD, but on the other hand, after quite a bit of time, it'll be nice to not have a trip over 15 minutes for the next week or so. To recap...Weds: Our home to my parents'--5 1/2 hours. Thurs and Fri: No driving!! Saturday: My parents' to friends in Columbia-- 2 1/2 hours, then friends to M's parents' place--2 hours. Making a triangle in East Central Missouri...priceless. Tomorrow we'll go 35 minutes to Children's, whole day of visits, same trip back here, then 3 hours home.

On one hand it's nice to let the hosts do their thing, but on the other hand, we tend to like things our own way.

On one hand it's great that Braska will sleep well in a Pack N Play if it's quiet and dark, but on the other hand those conditions are not always easy to come by, sometimes downright impossible.

On one hand it's nice to catch up with family, but on the other hand, sometimes you wish you were still out of date and blissfully in the dark.

On one hand it's great to have lots of food around and goodies a'plenty, but on the other hand, I'm gonna have to put in some serious treadmill time to make up for that a'plenty.

On one hand it's nice to just have the four of us (me, M, Braska, and Belle) as a little family capsule moving around together visiting, away from some distractions, but on the other hand...ok, I got nothing on that one. I just plain like it. My husband would probably have something to add there, though.

On one hand we like the fun, games, goofiness, teasing, and playful spirit of lots of family, but on the other hand, we really like quiet.

On one hand we're very appreciative for our parents for contributing to who we are, but on the other hand, sometimes it's so very painful to watch them and see glimpses of ourselves in situations, conversations, and attitudes. On one hand that's no fun, but on the other hand, we always come home with new resolve not to repeat or carry on certain traits. It happens with both sides. Some things are funny as we elbow each other and smile, and some are just hard to watch. We talk about how we don't want that attitude, that "gene," or that social tick. And we ask, can we overcome? The cool thing is that we're succeeding in many ways. Hopefully, Braska will have a shorter list of things to overcome. All we can aim for is improvement.

On one hand we love to spend time with our families, but on the other hand we try hard not to make it alot of time. Everyone comes out better that way.

All in all, it's been a pretty good visit. Better than many. I call it a successful trip.

Thursday, November 22, 2007

Thankful, very thankful.

Pam at Rhett's Journey tagged me for a meme of what things we're thankful for. I've meant to do another one of these for a while, but obviously haven't gotten around to it. (Reminds me of a wooden coin-like thing I had when I was younger that had the letters TUIT on it. It was round. A round tu-it. Get it... I always think of that.) Anyway.......

Since it's Thanksgiving Day, it's about time I get over my procrastinating ways and get to it.

~I'm thankful for a sound mind and good sense. I know that may be debatable in the opinions of some of you, but I've seen some disturbing examples in those around me lately of a lack of sound-ness. It makes me very thankful that I have the ability to consider a situation, review the options, and make a sensible decision. It's no small thing. I still goof up, but those seem to be fewer and less severe.

~I'm thankful that one year after living through the heartbreaking events of Braska's arrival and diagnoses that I'm not scared of those things anymore. There will always be obstacles and challenges, and I do still get frustrated about her feeding issues, but it's all manageable. In the beginning I really thought I was doomed and would never have a happy day without despair again...thank you hormones... so we've come along way.

~I'm thankful that God has it all figured out, and when I realize that and simply take the steps that he shows me, my life is SO much less stressed out and difficult. I'll never be free of trials while on this earth, but when I stop and just let Him do the driving, things are so much more bearable and even fun!

~I'm thankful for all you fellow DS bloggers! I have learned so darn much from all of you, more than I could have imagined. It's such a big part of my day to keep up with everyone, see what's new, learn from your frustrations, and celebrate with you and your precious ones! I wish so deeply that I had had the strength to dive into this resource sooner. But now I am the first to spread the word to new parents who find themselves in our kind of situation. Every time, they are as thankful as I am. So thanks to you all for continuing to share so that we can all know we're not alone!

~I'm thankful for the privilege of being able to stay home with Braska. It's been a huge blessing to be able to work from home for the past 3 years, grow a successful business, and now be able to cut back to have time to take care of all her appointments, needs, and my own sanity. I'm thankful for "the girls" who do the toughest work for the company and keep us going. You guys are the best!!

There are a zillion other things I'm thankful for, and I should be more regular in acknowledging them. I do spend several times each day JUST thanking God for blessings. It has made a huge difference in my attitude toward the issues I face. Make it a regular thing, not just one day a year. It'll add years to your life and great length to your patience!

Wednesday, November 21, 2007

The story: Special delivery

If you want to get caught up, all the way, then click here for the backstory.

So I rested and slept and thought and waited until about 2 am. The contractions were getting more intense, and although they didn't hurt, I could tell something was different about them. I debated in my head alot about whether or not I was feeling the "right kind" of pressure that they kept asking me about. Finally, I asked to be checked again, and what do ya know...it's time!

They called Dr. N right away and got me all ready to go. She got there in about 10 mins, got all gowned up, and said, "Let's have a baby." I pushed 4 times, over about 8 or 9 minutes, and there she was at 2:27 am. 7 lbs 0 oz, 19 1/2 inches. Nebraska Larae. I didn't have a bit of pain while pushing, either. Very cool.

It was all very exciting for about 1 minute. One precious minute of bliss. The baby went to the warmer just across the room and my husband followed. The doctor continued to do her thing on me, and I noticed that the nurses were whispering over at the warmer. I immediately felt uneasy and wanted to know what was up. Everyone just kept talking all hushed. Braska was crying, so I knew she was breathing and all. My husband came back over to me and I asked him what was up. I don't remember what he said exactly, but he blew me off, basically. Said it was all fine or something. He knew at that point. He just didn't tell me. The nurses talked to the doctor, the doctor looked at Braska, then she came to finish up with me. She was telling me all about what to expect for my part of the recovery, etc. Finally they bundled the baby up and brought her over. I knew immediately when I looked at her. I could see it in her eyes.

I feel the sense of loss again now just as I did in that moment. But now it's passing and minimal. Then it was the whole world.

From there on, for the next two weeks almost, I was in a fog. I don't remember alot of things. Some I remember distinctly though. Dr. N came and said that they suspected Down syndrome and that they would draw some blood and confirm. She said they would be running an echo to check for heart defects, but that she didn't think they'd find any since all of my ultrasounds were good views and showed nothing. Wow.

They came to draw the blood and they stuck her I don't know how many times. I don't know now why I didn't make them stop. Tell them to do it later. If I'd have realized how unimportant it was at that point, I would have, but I was numb and almost couldn't put a thought together. I sat there and watched them stick her and she screamed. Not 30 minutes old and she screamed for almost that long while they tried to get blood. Finally, she went limp. I thought something happened, but I think she just shut down. They continued to stick her but she didn't move. Her eyes were open, but no sound. It was heartbreaking, I do remember that. Thank God she can't remember that.

We spent the rest of the "night" trying to rest as she slept in her little acrylic crib at the end of my bed. I watched my husband sleep, and my mind just raced and was nothing all at the same time. I remember thinking about how it must have been all the stress of the first trimester that did this. I was so mad at the people responsible for that. Then I thought maybe it was some kind of mistake...I thought that alot. But I knew. I just knew.

I felt that this was the worst thing that could happen. This was a sort-of surprise pregnancy, one that brought a great deal of problems to our marriage early on. Things had been looking up over the last couple months of the pregnancy, and I was hopeful that this was a new start. But nope, that wouldn't be possible now. This would be the icing on the horrible cake. I was sure that I had lost everything I knew and loved at that moment, and I would be left to deal with this child and all her problems alone. You can see how I didn't get much sleep those few hours when I had the chance.

Braska hadn't been the least bit interested in breastfeeding when they had me try, but then again, that was right after they'd made her a pin cushion for 45 minutes. Who could blame her? Man, I wish I'd had my senses about me...so much I would like to correct. That's the nature of reminiscing, I guess. So she hadn't eaten at all at about 6 hours. The nurses took her to bathe her and try to get her to eat. They gave her a little from a cup, they said, but not enough. So we were told that they were moving us to the postpartum area, they were taking her for the echo, and she would join us there. We waited about 2 hours, and I was getting anxious. Finally, they brought her in, but only for a few minutes. They said she'd still not eaten, and they were going to put a tube down her nose and into her tummy to feed her. I was not at all happy about that. In fact, when they took her to the NICU to do this, and then called for us to come see her, I couldn't go. My husband went first and came back to tell me, "It's not that bad." I did manage to go in there for a short while, but I had to leave.

The NICU doctor came to tell us the results of the echo that afternoon. I remember him standing there with his PDA (the device), talking to us about a PDA (the defect) and mentioning AV canal. I listened closely and understood...after all, I work in medicine and medical terminology. I thought I could handle it better because I "got it." But after he told us the situation of her two holes and what to expect, including surgery at 3 to 6 months old, I fell apart. I had a harder time with the heart stuff than I did the DS at that point. I kind of refused to think about the DS, hoping it would be wrong. But this heart stuff, that was for sure. That was proven to exist, and I couldn't deal with it.

The rest of that day is a blur. I know we had friends come to visit and some family in and out. But I was just a shell of myself, as they say. I only remember going to sleep that night, my husband getting out of his bed and crawling into mine to hold me and cry with me. As painful a time as it was, that moment will always be a cherished one. We talked then only a little, but it was probably the most connected we had been in months before and after. For that moment, we were in it together. And that's how the day ended.

November 21, 2006. One very long day. One very sad day. But the day that led to many, many happy ones to follow. If only I could have glimpsed that then...

Tuesday, November 20, 2007

The story: The big day...or so we thought

One year ago today...

It doesn't seem possible. It's been a year. I've been putting off writing this because I wasn't sure what all it would give way to in my brain. So we'll see... if you are up to reading the story, you might want to grab a hot cocoa or something and get comfy.

November 20 has always been my parents' anniversary. That's what the date meant to me. Until it was decided about my 37th week that it would be a good day to induce me. My doctor was going to be out of town for Thanksgiving, and I didn't care to roll the dice on who else in the group I might get stuck with if I waited it out. Plus, I'm a planner, so I loved knowing when it would all take place. I'll spare you the icky details, but I was already "progressing" a week before, so the doctor felt like I would go quickly through the process. I figured we'd show up in the morning, have a baby by dinner, nice and easy.

We arrived early that morning, checked in, got all hooked up to everything, and Dr. N came in to break my water. Let's just leave that whole thing at this....totally the grossest hour followed. I then got my epidural about 90 minutes later, still not having a twinge of pain. I hadn't had any contractions leading up to this, so I thought I was in super good shape. I was more scared of the epidural than I was of anything else, in all honesty. I hate the idea of needles of any kind, and I just didn't see how I could possibly stand this procedure. Thankfully, it was quite bearable, just a slight prick with the first topical numbing shot, then nothing else after that. I felt some weird things, but no pain or discomfort. Then I laid back and waited.


My husband posted to his blog a couple times during the day. They came to check on things now and then, but largely the next few hours were ok and uneventful. We watched the little monitors to see her heart rate and when the contractions would hit, since I wasn't feeling anything.

At some point early afternoon, maybe it was around the 3pm shift change, our nurses changed. The great ones who we started with left and we got a new one. Actually, it was a new one and a newer one. One was training the other. Never a good thing, I now know. The trainER was kind of rude and abrupt, but the trainEE was nice. Unfortunately, the trainEE didn't know to check on things and the trainER didn't double check her. How do I know?? Well, you see, there was a point just after they came on that my little pump of wonder drugs beeped, along with the fluids I was getting being empty at the same time. The trainEE came in to change them or whatever, and then she went on her way. Over the next hour or so, I started having more pain. I was feeling the contractions and they were getting worse and worse. Someone would say that it was just getting "closer to time" and that I would feel them a bit more as it got time to deliver. I tried to tell them that something was wrong. I bet I said that 100 times, pleading with someone to check on something. My husband was there and trying to calm me, my mother had arrived and was doing the same. Finally, the anesthesiologist--a different one than the one who placed my epidural--came to check the placement and make sure it was all good. He looked it over and confirmed that it was ok. Since I was still having so much pain, he gave me a bolus of meds into the line for the epidural. I felt the cold in my back, but I never felt the pain decrease. This happened twice, with no pain relief in between his two visits over a couple hours. But I wasn't progressing in dilation, so something was up.

At the height of pain, I was a yelling mess. I remember it, but I'm sure my husband could tell it better. I went into the "I can't do this!" and "Make it stop!" phases, and I kept telling them that this wasn't how it should be. I was without pain and fine, watching the strong contractions on the monitor, then a couple hours later, I'm screaming through ones that weren't as strong...something was wrong, and I was mad at everyone for not believing me. Finally, my husband went out to the hall and said someone had to do something right then. By then, it was sometime after 8 pm, I think, and there were new nurses again, good ones. They called the anesthesiologist--this time, the third trip, it was the guy who had done the placement to begin with. He noted that the catheter was out of place, probably because of my writhing around in pain. He said they'd have to do it all over again, starting fresh. That would have been fine, but I couldn't hardly sit still like you must do while they do the procedure. It was torture, to put it simply. And when they got my second epidural in, and started the meds, they noticed that the trainEE from earlier had turned off my pump that was giving me the epidural meds. Yeah, turned it off. And the trainER hadn't double checked to notice it. Even when I was telling them over and over that something was wrong. They apparently never looked at that.

So once I got the second epidural, it was only about 5 minutes until I was peachy again. My husband tells it well of me going from crazy insane in pain to calm and cool in minutes. I was talking to my friend on the phone soon after and watching the super strong contractions on the monitor without feeling a thing. Drugs are good....I highly recommend them! After having been with and without, DO the epidural!!!

The rest of the night was spent waiting, progressing slowly, and trying to get some rest. The family was all there, in the waiting room, not wanting to go to the hotel or go home because they thought it would be soon. But Braska had her own plans...

Dr. N came to check on me and found that she was turned the wrong way. Not breech, but head facing my back instead of my front. This meant that she kind of got stuck, and they said that until she turned herself, it would be a very slow thing. That if she tried to come out that way, it would be hard and painful. Good. Just what I wanted.

So we continued to wait. I slept on and off. Most of the time I just sat there in the room with the lights off, alone. My husband had gone out to the waiting room to hang with the fam. I didn't want everyone in the room with me. I don't know how people can have like 10 people, or even 3 or 4 in there to "watch." Ewwwww...I didn't even want my mom in there, but after the chaos, when it came time to deliver, it was good that she was there.

That takes us up to midnight...when I was frustrated at my little bundle who messed up my plans. She was supposed to arrive on 11/20, but she didn't cooperate. Little did I know that was only the beginning of my plans going out the window...

Tune in for the rest of the story tomorrow...the day she actually decided to join us.

Saturday, November 17, 2007

Secret blogger gift!

Today my mailman brought me a package! That's always fun. And it was even better because the return address said "Secret Blogger"!

Shelley from Life as Household 6 got my name! She sent me some dandy Christmas kitchen items and *drum roll please* Godiva chocolates! Woo Hoo! Thanks Shelley!!!

Friday, November 16, 2007

Simulpost: Time to DO something

For those who are skimming and in a hurry, read this... if you are one who is planning to get Braska something for Christmas (I realize that's not all of you, of course) please grant us this wish... FIRST donate to one or more of these Angels, then if you choose, feel free to wrap up something for her. But I would largely prefer that you spend your money on them...they need every penny, and we simply don't "need" for anything. If this means that Braska has no "actual gifts" under the tree, then so be it! And the same goes for gifts for me! Let us know who you donated to, so that we may add them personally to our prayer list of special friends. Here's why...

Lately, I've had an especially sensitive heart toward the kids of the world, especially disabled, who are in such poor conditions in institutions and orphanages. This is a new thing for me, not new that I care, but that it's been bothering me so much. Braska and I have been praying every single night for these children, that God would comfort them and somehow not let them experience the pain and emotional neglect that is inevitable. I've gotten where I can't hardly think about it without crying and just wrapping Braska up in big hugs. No child should have to live without interaction and human contact. It's making me have a whole new view on adoption, even though I've always had a heart for it.

The stories are here if you want to familiarize yourself with some of the problems. It's heartbreaking, and I've been asking God to show me where I can start to actually DO something. I am tired of just hearing, crying, and feeling helpless. So this is where we start.

Others are DOING something as well...Meredith and her family at Cornish Adoption Journey is right now waiting the call to get the time that they will fly and pick up precious Aleksa, and there are other adopting, too. Michelle at DownBlogger had a great post and a call to action as well. Several others of you have posted to spread the word.

For me, this is the first thing that popped in my mind. If you were going to pick up a cute outfit for Braska that is $15, then please send that $15 to Reece's Rainbow's Angels. If you want to get the outfit too, then go right ahead. :o) I'm not trying to take the gifting joy from you, but I want to share a more important joy with those who desperately need it.

At least take the time to go look at them, see that they're kids too. Consider donating as a family, DS network, Sunday School class, small group, or neighborhood. They want no more than to be loved, and every child deserves that...every child.

Thursday, November 15, 2007

Simulpost: All done

(I don't have time to write two posts...so for those who check both, sorry to be repetitive.)

Wow, that was quick. I laid her on the bed, walked out, played a little solitaire on my phone because they said I wouldn't have time to even log on to my computer, and they came to get me in about 9 minutes. That's quick. They didn't even give her ANYTHING, just pulled the PEG out (that HAS to hurt!) and then put the new button in. I'll have pics later, but for now, we're good and grabbing a bite to eat before we swing by Grandma C's house on the way home.

They said she screamed when they held her down and such, but by the time I returned to the room, she was calm and happy and not even red-faced. She is such a tough cookie! Thank you, God, for such a tough little girl!

Wednesday, November 14, 2007

Tube out, button in

Tomorrow morning I'll pack up little Nebraska Larae and we'll head to St. Louis Children's. She has her "switch" procedure at noon, at least that's what I call it. They'll take the Corpak out and put in a Nutriport. The good part is that there will be no more tube on the outside, nothing for her to grab and tug on whenever she gets the chance. This morning she got it the best yet, and I thought she was going to pop it out. I just knew we'd made it all this way and the morning before it's switched, she'd get it out of there and we'd be headed to the ER. But she was caught in the act and all was saved.

Pray for safe travel, successful procedure, no complications, and that Mommy and baby don't go crazy in the car for 3 hours down and then back again. Aw, darn! Just remembered that I forgot to pick up a couple books on CD for the drive. Grrrrrrrr

Have a good one...

Monday, November 12, 2007

Gift certificates, anyone?

I have 4 gift certificates, each for $25 off a purchase at CanvasOnDemand or GreatBigCanvas. My sister got us a nifty canvas print a few months ago, so I guess they want more of my business. It is a really super neat gift idea, I admit, but I'm happy to pass them on to whoever if you're interested. Just let me know in the comments and send me an email (in my profile) with your snail mail address. First four get 'em...ready...GO!

Thursday, November 8, 2007

Best laid plans

Today was going to be a day to get things done. We didn't need to go anywhere, we didn't have any interruptions on the schedule. I was going to get caught up with work-work, make a dent in the backlog of housework, and start tackling the 10 x 10 pile of paperwork that I still half-heartedly call my office. I love productive days.

That was the plan. The reality was a bit different. Braska was especially grouchy this morning, a pattern that's been increasing the last few days. It's not fun and completely out of character for her. I realized that we had never returned the syringe pump that we used for feeding, even though we haven't used it in over 4 months. After getting Braska dressed to go out, she spit up on her outfit...repeat twice. Eventually we got the belly settled and more clean clothes on, so I ran that over to the medical supply place. When we got back it was lunch time, M was home, time to feed him and then it was Braska's turn. She griped and complained and finally fell asleep on me. I decided the sleep was more valuable than my getting up to do anything active, so I held her with one arm and worked on some work-work with the other, laptop precariously perched on one leg. Typing with one hand is not my forte.

When she woke up, she was happier, thank goodness, but I must admit that my motivation for this big productive day had waned. She rolled around on the floor talking to herself and her toys in a grumpy tone for a while as I finished up several batches and projects. At least I got that done!

Now it's almost time for M to be home, and I should be thinking about what I'll do for dinner. I'm for cereal all around, but then I could do that just about every day. I need to do a whirlwind kitchen cleaning in the next 13 minutes before I can think about getting more stuff out to start dinner. We'll see if the BraskaBear is agreeable to the situation...

Tuesday, November 6, 2007

November at a glance

Just re-did the whiteboard calendar in the kitchen...This month is gonna be a bit busy. Some things aren't really "to do" but I'm sentimental, so remembrances still count. ( I realize I'm a few days late, so some have already passed...but you get the idea.)

~Nov. 1--10 years ago my husband rolled into town here with all his belongings in his car (and his parents' truck too, as I remember it) to move in and start all over after being in Montana for many years. I came then, too, arriving that night for my first weekend visit here. And the rest is history, kind of... he (and me, occasionally at first) has been here ever since. For both of us, this is up there with the longest we've lived anywhere, since we both moved alot as kids.

~Nov. 1--Appt with realtor (more on this later) to discuss improvements we plan to make and what priority is best. No, we're not moving.

~Nov. 3--Saturday singles...I'm meeting a couple times a month with a group of college girls for chatting, breakfast, some Bible study, and more chatting.

~Nov. 6--OT (occupational therapy for Braska)

~Nov. 7--ST/FT (speech/feeding therapy for Braska)

~Nov. 11--Our wedding anniversary. 7 years.

~Nov. 11--Julia's (youngest sister) 12th birthday.

~Nov. 12--DT (developmental therapy for Braska)

~Nov. 13--OT

~Nov. 13--Braska's one-year pictures

~Nov. 14--ST/FT

~Nov. 15--To St. Louis for Braska to get her new button .

~Nov. 16--Belle(the pooch) to the groomer.

~Nov. 20--My parents' 37th anniversary.

~Nov. 21--Braska's 1st birthday.

~Nov. 22--Thanksgiving. To my parent's house in Missouri. (I think we're doing Christmas for this side then too.)

~Nov. 24--Possibly to Columbia, MO to see friends then to St. Louis to in-laws.

~Nov. 27--Braska's one-year day full of appointments in St. Louis (ENT, audiology, cardiology, eye, labs, DS spec/geneticist) ...then finally home.

~Nov. 28--ST/FT

Actually, that doesn't look as bad as I thought it would....scary as that is. There are a few other little tidbits here and there, lunches with friends, personal appointments, and things can always change... but it should be a fast month. And I'm all for that.

Sunday, November 4, 2007

Blog breather

I suppose I wore myself out keeping up with 31 for 21. Or that's the excuse I'm going with for now, anyway. I still plan to finish The Story, but not tonight. I've got old pictures I'd like to share for the humor value, and I've got some ponderings that I'm curious to have some other perspectives on, so we'll get to that soon.

For now, I need to finish the laundry, feed the child, and go to bed. Sweet dreams to all.

Wednesday, October 31, 2007

31 for 21: Gettin' cardio early

(Update: I've included the article...for those of you that had trouble earlier.)

My long-lost buddy Mary sent me a link to an interesting article.

Treadmill training helps Down syndrome babies walk earlier

CHICAGO (AFP) - Treadmills can help infants with Down syndrome learn how to walk months earlier than traditional therapies, a new study has found.

Parents of 30 babies with Down syndrome were asked to help their children walk on the treadmills for eight minutes a day, five days a week. They sat on a bench which straddled the machine and held their babies as the treadmill belt encouraged them to take steps.
This exercise helped the babies learn to walk up to four or five months earlier than traditional physical therapy alone, the study found.

More intensive training helped the babies to walk even sooner, the study found. The intensity of the training for half the babies was increased gradually after the infant could take 10, 20, and 30 steps per minute. The speed of the treadmill was increased, as was the length of training. Some children were also given light weights on their ankles.

Children with Down syndrome generally don't learn to walk until 24-28 months, about a year after children without developmental disabilities. Getting them walking sooner can help improve their social skills, motor skills, perception and spatial cognition, said study author Dale Ulrich of the University of Michigan's Division of Kinesiology.

"The key is if we can get them to walk earlier and better then they can explore their environment earlier and when you start to explore, you learn about the world around you," Ulrich said. "Walking is a critical factor in development in every other domain."

Down syndrome occurs in about one out of every 700 births.

Ulrich said he hopes hospitals and support organizations will rent the treadmills -- which cost about 1,200 dollars -- to parents of children with Down syndrome. The study was published in the October issue of journal of the American Physical Therapy Association.
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I think this is pretty cool, and we have a treadmill, so I might have to be starting the introduction to it so she's not afraid of it.

Thanks, Mary!

Tuesday, October 30, 2007

31 for 21: Ginger and Max

I found this posted by Tom at Narrow Ridge. If you've never checked out his blog, it is SO worth a look. He talks of many things, including adorable Ian, his son with DS, and he has a perspective on such that always impresses me and makes me think.

This clip is so encouraging to me.


I can't wait til Braska tells me silly knock-knock jokes. That will be some fun day!

Monday, October 29, 2007

31 for 21: First costume

Today we bought a costume for Braska's first Halloween. It's not really a fave holiday of mine, but I like fall alot, and what's not to like about putting a little baby in a funny costume next to a pumpkin for a picture. Plus Halloween is Grandma C's birthday, so we celebrate the day for her really.

Check back for pics from the FunFest at church on Wednesday night.

(We're not even telling her Pop what she's going to be...it's a surprise!)

Sunday, October 28, 2007

31 for 21: Life of the party

Tonight we went to a surprise party for our friend, Brent, but we missed the surprise. At least Braska and I did. But then we didn't know about it until like 5 minutes before then and it's a 15 minute drive. No harm though, and it was nice. Small gathering, interest-based group, as they all have MTG in common. I'm really just connected by marriage, so they let me come too.

And who stole the show? Yep, that would be the tiny one. She seems to do that. I don't think Brent minded at all, as he's not a limelight kind of guy. And Braska had a peachy time watching her Pop play and banging on a very colorful table. It was a nice little party.

Saturday, October 27, 2007

31 for 21: What to say

I have encountered plenty of people who ask "How old is she?" when Braska and I are out together here and there. They always guess her age about 5 months younger than she is, but that's ok, since that's what size she is. I have said several times that I can imagine it will bother me a bit more, although still not a huge deal, when she turns one next month and I see their reaction to that, as she still is in her car seat/carrier when we're in a restaurant or in a store since she doesn't sit up.

Today, I met some friends for brunch. The waitress was a nice enough, very young girl, and she started cooing at Braska right away. That's nice. I don't mind, Braska likes the attention, and I'm proud of my cutie. The waitress asked her age, and I told her 11 months. She then said, "But she's not walking yet?" as she noticed that she was up to the table in her car seat/carrier. I just agreed and said, "Not yet." She said she had a 14-month-old and told me how soon I'd be running after her. "Mine was walking by then," she said, referring to Braska's age. I just smiled and took a drink, trying to politely end that part of the conversation, hoping that one of my friends with me would say something about food or that she would walk away to let us look at the menu. She paused a moment, then finally said she'd be back in a minute.

I told my friends then that I never know what to say, and that's the truth. I almost feel like I want to defend Braska or something...like it's not her fault that she doesn't sit yet. But I also don't want to be just constantly blurting out that she has DS for no real reason. So I guess it's something I'll get used to. It's better now that her feeding tube is under her shirt instead of in her nose... that helps cut down on comments and questions, but still. Maybe I'll sit down and plan out some possible statement that I can kind of keep in mind. That's how I am. I like to be ready for situations. Then again, maybe I'll just go with it.

I don't mind telling her "story." So it's not that, I just wish I new what the right time was to say this or that.

Friday, October 26, 2007

31 for 21: Welcome new blogger!

I got a visit and nice comment from Rylie's mom today on Braska Bear and wanted to let all the cool DS bloggers (should I say bloggers who have children with DS?) out there know about a new friend. Check out her three adorable little girls and say hello!

Thursday, October 25, 2007

31 for 21: The story: GTT, ultrasounds, and Quad screen

Previously on "The story..." Part 1, Part 2, and Part 3 if you'd like to catch up or refresh your memory...

The continuing saga...

I didn't know a whole lot about the testing that is "normally" done during pregnancy. They gave me a folder full of all kinds of brochures at my first appointment. I read everything, but it didn't really mean alot to me. My husband and I talked extremely briefly about it and determined that we'd do the blood work stuff and, of course, ultrasounds, but nothing more invasive than that. I'm a chicken when it comes to needles and such, so the blood work was more than invasive enough for me.

Due largely to unrelated emotional stress during pregnancy, I lost quite a bit of weight in the first trimester. These issues combined to cause the dr to want to keep a close watch on the baby's size, so I had several ultrasounds early on. I also wasn't really eating--even though I didn't have morning sickness like many, I felt icky all the time--so there was also concern for the nutritional elements. All this meant that I had plenty of appointments.

I had some labs done at the end of April, and the result of the glucose caused the dr to want a 3-hour GTT (glucose tolerance test). That's about the worst thing that you can throw at me...to not be able to eat for 12 hours and then have to be stuck 4 times in 3 hours for blood draws. Well, I made it through, even with a couple extra sticks since they can't ever seem to get me on a first stick. A couple months later, it was time for another blood draw, and since they were going in anyway, I ok'd them to do the quad screen at the same time. I can't tell you all the dates things happened exactly, which is surprising to me as I realize it. Dates are generally my thing. It was in the middle of June sometime, though. I had the labs drawn on Monday, and they said they'd just give me the results the following visit, in one month...unless there was a problem. By this time, I'd already had 3 ultrasounds, all of which were perfect, with great views of the heart, no abnormal nuchal translucency measurement, and no reason to think anything was up. A couple days later, I got a call. The nurse told me that I had an elevated risk for Down syndrome, and she said I needed to come in a few days later for another ultrasound and an amnio if I wanted it. I told her I didn't want the amnio, for sure. A needle that huge, there's no way. As soon as I hung up the phone, I crumbled. I didn't need this! I was already living in the most painful time of my life, and now this?!

I was numb. A part of my reasoning for not planning to have kids was a real fear of ending up with a "not normal" child. It was a real issue for me...I just always had this feeling that I would be the one, out of everyone I know, to have a kid with problems that required more attention, more work, etc. It wasn't that I didn't realize the selfishness involved in that mindset, it was more like I just acknowledged the reality that I chose to avoid that possibility.

It's no big secret that I didn't have emotional support at home. There was no big discussion about what I would do. I was pretty much on my own, but I knew the amnio was out. I returned for the follow-up ultrasound, again everything looked fine. I talked to several friends who had recently had AFP's come back with elevated risk and had perfectly fine babies. They all knew several people who had the same. I even sent all my info to be reviewed by a maternal fetal medicine specialist (the perks of having half my family involved in medicine) who said he didn't seen any reason to be worried. I put it out of my mind. I wrote it off. Never bothered to deal with it further. I did pray for a healthy child and that she wouldn't have any of these issues, but that's it.

Here's the part that I wish I could tweak: I never once searched for info about babies with DS. I'm on the computer all day every day for work, and I spend alot of time researching everything. I'm a Google addict...don't know? Just Google it! I don't know if it was because I was so preoccupied with the other stressors that I was dealing with or if it was a kind of subconscious denial, but I never once even did a basic search. Had I done that, I think I would have saved myself alot of grief later. Had I seen that they are just kids, they walk and play like "regular" kids, I wouldn't have been so devastated when she was born. But that's for the next part of the story...

Wednesday, October 24, 2007

31 for 21: Back when...we were the gang

I've been spending some time looking through old folders of pictures from our previous digital camera. It's fun to see how everyone looked a few years back, to remember the crazy things we did, and how much time we spent with great friends. I thought that as I have time and feel up to it, I'll put some of the old pics up. They're not all flattering, let me tell you, but they all have meaning.

This pictures are from 2/15/2003. This is Mindy, Tim, Justin, Julie, me, and M.


It was a crazy snowy night in town, and NO ONE was out except the snow plows. But since our small group from church all lived within blocks of each other, we thought it was a good night to hang out and play games. One couple couldn't come, and I'm guessing it was because Brad was out plowing, since that's what he does when it snows. The other three couples of us got together at Justin and Julie's house. I remember that there was alot of laughing, and I remember there were some surprising answers to some questions, but I don't remember specifics. It was a great night though.

This was back when there were no kids for any of us. Tim and Justin were grad students, the rest of us worked "normal" jobs. We had evenings free and spent most of them together, rotating houses, but always hanging out at least a few times a week. It was a time I didn't cherish enough, I didn't realize how enchanted that time was. I rarely wish I could go back to a place in time... but there are a few. And this is one of them. Life was so good then, so worry-free, just a bunch of newlyweds enjoying learning about life together.

Now we're the only ones left in this picture. J and J are in Missouri and have 2 beautiful daughters and a third on the way. T and M have one and one coming too, living in Belgium. I truly believe that life would be different today if only J and J had stayed. But that's silly...it doesn't work that way. We miss them. They were our anchors to reality and to what was important. We still talk to them frequently, but not enough. It'll never be the same, but I'm so thankful we had that time with the whole gang. What I wouldn't give to be that happy and innocent again...

Tuesday, October 23, 2007

31 for 21: Baby A

Today I received word that a baby whose parents struggled a great deal with what to do after a prenatal diagnosis of DS was born this morning 4 weeks early due to some health issues of the mother. She was 3 lbs 12 oz and is doing well in the NICU according to the friend of a friend who is my connection. I believe mother is doing well, also.

I don't know yet about her status of medical issues or not, but we're praying she is healthy and thrives so that she may go home soon. I am just so glad she's here, and her parents get to see and hold their beautiful child. God, bless them with strength. Thank you for letting them choose life for her.

Monday, October 22, 2007

31 for 21: Planted and done

If you're just joining us, you might want to catch up on where we started. The final shred of mulch was placed today. It looks SO much better I think. Of course, next spring and summer will be the real chance to see it all in it's splendor. It looks a little sparse currently, but I still like it better than all the old foliage clutter.

Saturday, we worked on the rocks...and there was a TON of them. They had to be moved by hand. Yeah, that's right. Bending over and scooping up handfuls of big, jagged rocks. We had no idea how much was actually in there! Then the guys worked on them yesterday, most all afternoon. And they got it done! I can't believe how fast they got through it. This is what we ended up with.

That's a pile of rocks about 3 ft wide and about 24 feet long and about 12 inches deep. That's alot of rocks. We'll deal with them later... anyone need rocks?

Then this morning, this arrived.


The fabric stuff got put down and the mulch started going in.


So all the plants are in, and now the mulch is in.

Here's some before-and-after shots.





I know... it looks a bit stark and plain, but give it time! I like it alot, and I'm so excited to see it all fill in. The photos don't do it justice, I must say.


Here's an overhead view.



Now, for the next project on the increase-home-value list...windows and siding. Not this week though...

Sunday, October 21, 2007

31 for 21: The story: Finding out and telling family

I've thought alot about how to tell my story of the pregnancy, birth, and following. The truth of the matter is that most of the pregnancy involves things, not pregnancy related, that I don't want to remember or write about here; it was not a pleasant time, as I wish that it could have been. BUT, there are a few parts that I have pictures to help tell the story, and that makes it easier. So I'll do this in pieces, and I hope you'll simply allow me the gaps.

On March 31, 2006, I woke up early and took a pregnancy test. I had planned to do this the night before. I had been experiencing some symptoms and was headed to the dr, but I didn't want to look ridiculous and uninformed, so I thought this was a way for me to rule it out, to tell them that I'd already checked and this wasn't the problem. So you can imagine my surprise...


Yep, I took a second one to be sure.

It was about 6 am, and I woke my husband to tell him. He looked at the tests and said, "Hmmm. Look at that." And he went back to bed. No magic in that moment really.

We decided not to tell anyone until we got to tell the family, and since they live away and not in the same place as each other, we tried to figure out how to accomplish telling them all at once. We didn't want anyone to hear before anyone else. So we managed to arrange a get-together at my brother's and sister's house the day before Easter. My family was all there, and my in-laws came with us for the cookout. My brothers-in-law were on the west coast, so they couldn't make it.

We had a nice little dinner and such, then we pulled out a special gift we'd made for each of them. I'd colored Easter eggs for each person there with their "new" name on them...Auntie Rachel, Uncle Ryan, Grandma Carole, etc.


We had them in little individual baskets, so we brought them in, while eyes were closed, then everyone opened and looked at their gift. They all said thanks and thought it was cute, although they weren't so enthused. Grandma C made the statement that it was cruel to give them such a thing from Belle, our dog. We told her it wasn't from Belle. She didn't get it, and no one else did either. Then we waited a few seconds and said it again..."It's not from Belle." Everyone just looked confused and weird. Then we said it in unison once again..."It's not from Belle!" And it sunk in suddenly. All chaos, screaming, clapping and such erupted. M caught a quick pic of the grandmothers in their shock.


Then the phone calls commenced as Grandma C called all relatives and friends to share her good news. My sister Joy announced to us behind happy tears that she'd been praying for this to happen, to which we responded that we wished she'd have shared that with us so we could have been more "careful."

Grandma C proceeded to share the news too. And M shared in his own way, the only issue there being that I didn't know it had been "shared" until the phone calls started pouring in.

All in all, it was a pretty neat event.