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Showing posts from August, 2010

SUPER deals! Who doesn't love FREE?

I was turned on to the Hip2Save blog by my friend Sara . (Thank you, Sara!!)I've had all kinds of goodies sent, samples, free photo books for great grandma, and some great savings on other items. This is one I would highly recommend you add to your reader so you don't miss things. But today they've had TWO that are just too awesome... Check out this post about a free 8.5 x 11 photo book--hardcover!--for only the cost of shipping. That's a $39.95 value for free! I'm working on mine now, doing Kinlee's first year. But it is ONLY good today, 8/31. So go now if you want to catch it. And check out this post for 100 free business cards. Even free shipping! Details on the post of how to do it, but it's super simple and I just ordered new blog cards. I did up a little card that has my blog address, Braska's, and our local DS groups info as well. There's a little pic of Braska (image below) and one of KiKi as well. Images and text on both sides. My orde

Meet-up countdown: 5 days

It’s Sunday.  On Friday the first meet-up attendees are arriving in town.  This thing has grown like I never expected!  We now have families coming from TN, WI, MI, IL, KS, IA, CO, and MO.  There will be over 65 people involved in at least one of the weekend’s events.  The single event that has the most people RSVP’d is dinner on Saturday night.  We’ll have almost 60 people at a restaurant.  Sunday evening we’ll have about 50 together again.  Won’t that be crazy?!? I’m really blown away at how this seemed to sprout it’s own wings and take off.  Especially in the last couple of weeks. Suddenly there were more and more people sending requests for details.  I’m so glad that we’re having a good crowd.  I do hope everyone has fun.  I’m not the host or anything, but I did kind of take the baby and run with it. (No surprise there.)  So I feel responsible for everyone to enjoy themselves, especially since some are driving over 12 hours and others are flying in!! There will be lots of fun

Meant to Be

My fave music dude is Steven Curtis Chapman .  No shock if you’ve been around awhile.  He has recently written a new song for the upcoming Veggie Tales movie, It’s a Meaningful Life .  The video was just released today, and since it combines great music with clips of Bob and Larry, the girls and I have watched it almost a dozen times today already.  Braska kept asking for “more min to be please.” (Don’t miss the beautiful faces in the video below… smiles, tears, and celebrations surrounding adoptions) He writes from a perspective of a full-time orphan advocate, a father who lost a little girl tragically, and someone who believes that every life is precious… and meant to be.  No wonder, then, that these words seem to remind me of Braska. My special little gift. Wrapped up just for me.  Sure, they apply to every child, and Kinlee is a gift, too, no doubt.  But somehow this seems to just speak Braska at this time in my life…  Meant To Be Here  Making This World So Much More Than

The amazing ABC girl #2

My girls have a huge love for their ABCs. "Letters!" or "ABCs!" are common requests around here. Braska often gets comments from her teachers, therapists, and friends about how amazed they are at her ability to identify all her letters (upper AND lowercase) in random order and proper order, and to say each of them so clearly. We're very proud! But now, little sister has become as obsessed as her mentor. She must "do letters" several times a day. So I thought you might like to see how she's doing... I'm just constantly blown away by this girl. Make an on-line slideshow at www.OneTrueMedia.com

StL vs. SF

At Busch Stadium, enjoying inning 3 of the Cards and the Giants. Not too bad since the sun has gone down. The girls are at having a blast with Grandma C and PaPaw. It is good to be back in StL! This message has been sent using the picture and Video service from Verizon Wireless! To learn how you can snap pictures and capture videos with your wireless phone visit www.verizonwireless.com/picture . Note: To play video messages sent to email, Quicktime@ 6.5 or higher is required.

Well, bowl me over!

This kid.  Kinlee Carene. Holy cow.  In June, she was introduced to the pool (as she didn’t remember her time in it last year, and they weren’t fond times, usually) and she threw a FIT, but I outlasted her and she quickly decided that it was fun that day.  She still has been hesitant, even when in her “floaty boat.”  But over the 5 or 6 visits to a pool here or there this summer, she has really come to enjoy kicking around. She has wanted to be out of her floaty boat more, and the last time or two she keeps saying, “Down please!” when I’m holding her in the water.  She is convinced that if we just let her go, so could do her own thing.  Clearly, this is not the case, as we did allow her to learn very quickly at one point.  But today, on a spur of the moment pool day, we decided to try water wings on her.  I didn’t think it would work out, but once again, I completely underestimated this child. She took to them IMMEDIATELY and absolutely loved the freedom!  She did drink some of the

Little sis and the big 3-ohhhhh

Today my younger sister Rachel turns 30. Huh? Can it be that time of year again? Her birthday always indicates that mine is precisely 2 months away... and she'll be 30. *gulp* The math hurts. She has accomplished an awful lot in her 30 years. Undergrad at 21, MBA almost immediately after. She’s had and still has positions in her career and community life that are usually not held by one so young. She kissed some frogs (big sister’s opinion!) and finally found her prince about 4 years ago. They’ve been happily married for 15 months, and they’re trying their hardest to buy a house. I'm enjoying house hunting vicariously through them. If only they could find the *right* one! For a kid I could not stand for most of the 10 years we spent in the same household growing up, and a college student who managed to get herself booted from this older sister’s apartment for “poor choices” (again, just my opinion, but it was my apartment!), she’s turned out ok. Better than ok. She’s become

What sleep can do…

We slept. After a couple worrisome little waking times early in the night, she slept several hours in a row, and I’m thrilled that I did, too. Braska woke this morning—in HER bed—with a smile.  No fussing, and she’s been great so far.  I’m really hoping the worst is behind us!  I like this happy little bug so much more than the grouchy mini-monster who has been hanging around lately! I’m so glad to start the week with this bit of happy turn around! (More pics on Braska’s blog if you’d like a bigger dose of cute.)

Good night, and have a pleasant tomorrow

Time for a Weekend Update.  Before I bolt down the hall for my bed. Overall, we’re seeing improvement!  Let’s have a celebratory cheer from wherever you are! Woo hoo! To be a bit more specific, for those of you who like that kinda thing, she’s had no screaming fits today (except when she screeched a little during some reprimand response) and her belly seems to be calming down.  We did use the probiotics and got her back on yogurt, which she accepted better today than she has previously.  She seems to be having no pain with her surgical sites, so we’re very happy about that.  She did have a bit of a screaming fit last night that led to a bit of bleeding, which is supposed to earn us a trip to the ER, according to surgeon’s instructions, but it was minimal and short-lived, so we just waited it out. No problems there. She still is having issues sleeping.  She was up last night again every hour for about the first 3, when I gave in and brought her to bed with me.  She slept better th

Quick bit o’ news

After much discussion and analyzing of behaviors, we’ve cut her off. From the meds, that is. All of them. We’re trying today with no paracetamol and no ibuprofen. I don’t believe her issues are pain at all. At least not pain due to the surgery sites. What remains is GI distress. Lots of gas. The most horrible gurgling. It is SO loud. Really amazing to hear. But I am starting to think that it’s because her forumlas were mixed up a bit—she was back on Pediasure a while, and on a Peptamen that wasn’t her usual variety. So maybe her little system is just confused. Today we’ve gone back to her regular formula, Peptamen Jr. 1.5, in the hopes that she’ll calm down with the GI stuff. It’s clearly uncomfortable to her. But that kind of discomfort or pain is not to be helped with the pain meds. She slept horribly again last night, waking often, thrashing and kicking and fidgeting like crazy. It’s really frustrating not to know what’s happening with that. Someone actually asked me to

Would you want a cure?

One of the forums I frequent had a “Question of the Day” for yesterday asking if we would want a “cure” for Down syndrome if it were available. This is a very common question that comes up in forums and conversations. Many bloggers have addressed it. (I may have, though I can’t remember for sure and can’t look back to check just now.) I generally have the same answer. “No, thank you.” But I thought I’d share a bit more and reprint my response from the forum. Not interested. No, thanks. I don't think I can know what part of Braska is due to her T21 and what isn't. And due to that, I wouldn't take it away. [Here I quoted someone, but I don’t have permission to share that quote… it basically said that she feels that DS is only a tiny part of the child and that taking it away would not change their personality or who they are.] I see it differently. I believe a lot of her personality and many of the things we love about her are THANKS to the DS. It's in every cell she

Like Missouri weather

Usually, if you’re around here, and people have complaint about the weather, someone will say, “Hang around a few minutes.  It’ll change.”  Or something like that. Referring to a weird variety of weather that we can have, all in the same day sometimes.  (Of course lately it’s been 100 degrees for days and days… figures.) If you’ve been keeping up as we’ve been on this roller coaster, you know that she’s been ok for a bit, then she’ll meltdown.  She gets into a mood where she MUST be held (though she moves and fidgets constantly while held). Then she will just magically be ok and want to get down. She’ll watch a show or read a book for a short while, and I get encouraged.  She has even had moments of giggling and playing here and there.  Then she just gets the worst of sad faces, and back to the lap she must go.  Yesterday afternoon was better, I really thought we’d crossed a bridge toward healing and returning to our version of normal.  Then last night was weird.  She slept for abo

Jinxed. Or just too eager.

See that post below this one? I spoke too soon. After only 2 hours sleep she is up and crying. And grinding like I have NEVER heard before. If she has any teeth left in the morning I will be shocked. M is taking a turn because the grinding makes me want to scream. Or run. It is so bad. Oh my goodness. Lord please help this girlie feel better. Please. Soon. (phone post)

Ibu-prof-a-licious

Right now, at our house, we are willing to part with most anything EXCEPT the dye-free ibuprofen (generic, of course!).  I’m SO pleased to say that Braska has been much better—though not nearly “all better”—this afternoon after her first ibuprofen dose at 3pm.  We’re alternating it with the paracetamol, and so far, I’m very pleased with what we’ve seen. Amazing that something so “simple” could make such a big difference.  She’s had no bleeding, so we’re not too worried about the post-op ”no-ibuprofen for two weeks” rule.  Plus the ENT nurse is the one who gave us the green light, and she’s aware of Braska specifically. So I’m hoping for a good night, and a good morning, and FINALLY getting this house back in order if I get the chance to actually move about tomorrow. Thank you all for being so encouraging… and patient with my frustration.  There are still some days to go before she gets back to 100%, no doubt. Hopefully, this little saga will be behind us soon. 

Still trying to be hopeful

Are we sick of T & A post-op reports?  Yes. I am. I’m ready to not have anything further to say about this.  I’m still amazed, with her crazy-high pain tolerance, that this is causing her so much trouble.  She wasn’t even on pain meds this long after heart surgery. Braska did have a better night, in that she slept several hours in a row.  Of course, Kinlee picked last night to get up twice for no apparent reason… bad dreams, I’m guessing.  So I still had a choppy night, but I did get some rest, in pieces. This morning, I thought we had turned the page on the whining and whimpering and miserable fidgeting.  She had a good couple of hours, not all that perky, but not too down.  Then, just before noon, she crumbled again.  The screaming is enough to make my ears ring for quite some time.  It was short-lived but intense.  She calmed down a little and took a short nap, but then woke fussing again.  She was very upset and clearly could not get comfortable after her nap. It’s a cons

The one-week mark

A week ago Braska was in the OR.  Now she’s napping in her bed. I’m very thankful for the opportunities we have for great medical care.  I admit I’m frustrated about the pain-control element, but I don’t want to take for granted what amazing things can be done and HAVE been done in our experience.  I mean, come on… open-heart surgery on an 11-pound 3-month-old.  It’s still amazing… over 3 years later. Last night she was unable to sleep more than a bit at a time, once again.  I ended up bringing her into my room, which I hate to do because I get NO sleep when she’s in bed with me.  But she did get some sleep, and so it’s worth something.  It was very fitful, and I don’t know how she actually gained any rest from it, but I’m sure it’s better than nothing. This morning we had a bright spot, a few giggles, that I thought pointed to a light at the end of the tunnel.  Then she collapsed into the bad stuff again.  But she did recover a little in the late morning enough that we ventured

Pleading for improvement

I can’t describe for you how horrible it is to watch Braska be so miserable and not be able to do anything about it.  She is miserable.  I can’t come up with another word that fits.  She’s not sleeping more than an hour at a time. She can’t hardly sit still for fidgeting and whining and sometimes falling into screaming and writhing.  It’s impossible to summarize how much I want her to get better. She hasn’t been vomiting today, and for that I’m thankful.  She’s been off codeine for over 36 hours and still seems to be having GI issues.  The loudest gurgling and horrible noises that I’ve ever heard.  No wonder she wriggles around… We tried melatonin, and it didn’t help her sleep.  I bought some dye-free Benadryl to attempt to help her tonight.  Something has to give.  I’m going to crack if we don’t see a break soon. I need sleep.  Tomorrow is a week post-op.  Please, please let this be the turning point. This will pass.  That’s how it works. But right now it’s just about terrible

Sleepy sad beauty

Miss B is having another tough day but a tad better than yesterday. We went to the pediatrician first thing and she feels the codeine is causing more trouble than it is helping her. So we are going to stay with the paracetamol and hope it controls the pain. The dr feels that the vomiting from yesterday and the very restless and wakeful night last night could likely be due to the codeine as well. So we will try some time without it. So far she is pretty out of it. Seems very uncomfortable. But as long as she will sleep if I sit, I'll sit and hold her. Now what to do when KiKi wakes up... (phone post)

Day 5 is in the books

Today this little star was the only member of the family to leave the house. She went shopping with Auntie Rach...a favorite adventure of Kinlee's. And it helped Mommy get a little break. Braska had a very rough day. The med for pain, Tylenol #2, just doesn't seem to work as well as a strong pain med should, in my opinion. She has been writhing and whining much of the day. Even when she is in the middle of her med cycle, she still had 99.6 temp and was miserable. She vomited several times today and looked horrible, especially around her eyes. All pinkish and saggy. Poor little bug. she slept on and off when she would relax on a lap but it wasn't restful. She seems to be sleeping ok now so we will see how the night goes. I think we will be going to the dr tomorrow just to be safe. She takes such fast turns for the worse... I don't take chances. Better to check in. I'm headed to bed in the hopes we will have a quiet night. Thanks for the continued prayers.

Post-op funk

I don’t know if I can blame it on the surgery, the hospital stay, or just a break in my momentum from the past couple weeks, but gosh, I’m so darn weird in the head right now. Before I forget, Braska’s doing ok.  She spent alot of yesterday and today on a lap, sitting here or there for long periods, with a little whining occasionally.  But overall, she seems to be handling whatever she is feeling very well.  Unfortunately, I’m spending long periods sitting also.  Often she’s on my lap, but even when I haven’t had her (or her sister, who has also demanded A LOT of attention since returning from Grammy’s) on my lap, I’m still blah. Sitting.  Randomly looking through blogs or working on some graphics piddling or something.  I’ve kept the house completely neat and uncluttered, no piles at all, for close to 10 days prior to going to the hospital, and now I don’t have the energy to keep up with the smallest task, it seems.  Though I did manage to get the dishwasher loaded tonight.  Gee

Card campaign for Sarah and Joyce

My awesome bud Jen has had a MARVELOUS idea that I’m unfortunately late getting in on with all the hospital happenings of late. Most of you know Sarah, a very cool young lady with Down syndrome, and Joyce, her lovely mother, from My Name is Sarah (formerly Class of 2008).   Joyce is opening a new fabric store and Sarah has been super excited and helping get it all ready. This is a dream of Joyce’s, having a fabric and quilt store and a place that can employ those with various disabilities.  This Monday, 8/9, is the grand opening, and it’s also Sarah’s 21st birthday!  So how awesome would it be to flood their mailbox with best wishes for store success and birthday wishes for Miss Sarah?!?  (By the way, you don’t HAVE to know them to participate.  How fun to congratulate someone on a special event just because they will appreciate it!!) PLEASE get a card in the mail to them asap.  I know it’s short notice.  They will be celebrating all week. If it doesn’t make it by Monday, that’s

Post op Morning #2

The overnight went fairly well.  She was VERY uncomfortable and overtired by the time she relaxed and went to sleep.  She’s getting Tylenol #2 every 6 hours, one tab cut in half and crushed and dissolved.  She slept restlessly, but she did sleep.  She woke about 2:30 am pretty unhappy but not crying. (It takes A LOT for this kid to cry when it comes to pain.)  We gave her some formula and another dose of meds.  She went back to sleep pretty well and woke up about 6:30 am, which is normal. So far this morning, she has been very quiet and once again clearly uncomfortable.  She is not a whiner, but she’s been clinging and whining and groaning and just pretty pathetic.  It’s sad to watch. But she’s calmed down now to sit here and watch Sid the Science Kid.  She’s not singing along or laughing at the silly stuff, but she is watching and staying calm, and she seems to be distracted from the discomfort. I hadn’t planned to give her to beefy Tylenol #2 during the day, but I might need to t

Home soon. We hope.

We are heading home. She has been great though she is still uncomfortable and very tired and sad-ish. The catch right now is finding antibiotic and pain reliever that is dye free to go home with. Amazing that it isnt an option thats been developed enough. Julie saved us alot of trouble by bringing the paracetamol that I'd left at home. (Thanks again to Louise for that med too!!) We are dressed and just waiting for the final word... Braska is getting more agitated as we wait. I think she is just way tired and hurting.

Snuggles

We are enjoying some Wonderpets while we snuggle. She napped about 20 Mins but has been awake otherwise. After the water didnt seem to be a problem, I gave her some diluted formula. Just a few ounces. But it didnt settle well and she vomitted most of it over the next 30 mins. So we are just chilling out. Some good news is that she DID accept some tiny bites of ice cream just a few minutes ago. About 4 so I am encouraged by that. My biggest concern has been how she would react in terms of letting food in orally. I feel like this is a good sign. Blues Clues is on Noggin next so we will snuggle and find the three clues. Still no roommate. Hoping for a quiet night. And thanks for being patient with the icky format and questionable grammar of these phone posts. Gotta love technology. Ltr :) This message has been sent using the picture and Video service from Verizon Wireless! To learn how you can snap pictures and capture videos with your wireless phone visit www.verizonwireless.c

Quiet time

We are enjoying the quiet now. Except for the sound of Word World. B requested it. She hasnt said much since recovery so its nice to hear a little raspy voice. M went home for the evening and we girls are just hanging out. So far we have this nice corner room to ourselves. And we hope it stays that way. Quiet is nice. Though our poor little neighbor next door is having a rough time and making sure everyone knows. Dr M stopped by and it sounds like we might be able to go home tomorrow if all continues well. I gave B some water a bit ago (After venting a TON of air from her belly via the button) and we will try some formula soon to be sure she does ok with it after the anesthesia fog is all gone. Then maybe ice cream before bed. So far she will not accept even a sip of water but I will keep trying.

Settling in

She did great. A little upset in recovery but nothing more than super sad whimpers. We are now in our room and she is watching Meet the Shapes and has calmed down well. Will give her some time to relax before we attempt anything by mouth. Good news is that her ABR was fine. As we knew it would be. Thanks for your prayers and for checking on our princess.

Our temporary home

We are at the hospital. This is our little private waiting area. (ch...this look familiarish?) We shd be called back to start prep shortly. So far she is having a ball with Daddy.

To hold us over

This little bug is off to Grammy’s for the remainder of the week while Braska and I move into the hospital tomorrow and Daddy continues to work each day.

How we live: House tour, part 1

Curious. Snoop. Nosey. Maybe so. I admit that I like to know how people live. What they do. Where they go. Just normal stuff through the day. I’m curious about these things. Not like in a creepy kind of way, but I’m a people watcher. I like public places partially for the ability to just observe people. I’m the one who always checks out the background of other bloggers’ pictures, just trying to get a peek at their house, or their office. I’m just curious like that. It makes me feel like I know a person better to know a bit about their house. So to start off what I hope will be a little string of posts… ahem, hint hint …I’ll share where we live. Along with a bit of commentary of some interesting (?) things that I only noticed when I looked at the pictures after I uploaded them. **Remember, you can click on the pictures to make them bigger.** Here’s our house. All 800ish square feet of the main floor. 3 bedrooms, 1 bath. Kitchen, living room. That’s it. There is a partially finis