The Purpose of this Blog

The goal of this blog is to provide education and bring about higher awareness about Down syndrome. It is to share that life with Down syndrome (DS) is not scary, horrible, or to be feared.

My experience comes from raising my daughter, Nebraska Larae (Braska), born November 2006 with Down syndrome.
The posts on this blog are related in some way to life with DS or disability, and they are reposted here from my other family blogs. There are links to those blogs in the margin on the right side of this blog if you would like to visit them directly.

Thank you for coming by.

Saturday, June 14, 2008

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.

Thursday, June 5, 2008

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?

Wednesday, June 4, 2008

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!

Tuesday, June 3, 2008

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.